A STROKE OF LOVE --the experience of caregiving

6 Years Ago an Aneurysm Changed our Lives

2012-02-11T23:44:00.000-05:00

Six Years

A Saturday morning six years ago, I was sitting on the waiting room of the ICU of a hospital. I was feeling bomb- shelled. A handful of my closest relatives had spent the night with me waiting to hear from the surgeons who began operating on my wife's brain, trying to stop a bleeding that happened the night before.

One of the surgeons had come around 3:30am to tell us that they had completed the surgery. The aneurysm causing the bleeding had been clipped. Now it was a matter of waiting to see how her brain reacted to this traumatic invasion. They had brought her to the ICU. She was hooked to a respirator, which kept her alive. Her brain was too weak and traumatized to do this alone.

The surgical team had taken a couple of bone plates from the left side of her head to allow more room for the brain to swell. She had a white bandage covering her head. She laid there, unconscious, oblivious to all the commotion of the ICU and to the angst that had flooded hearts and minds of family and friends that slowly had been informed of the tragic event.

We could visit her in groups of two for only a few minutes. She needed rest. I remember her sister, holding Jan's limp hand with a look filled with sadness and the weight of a thousand tons on her shoulders. I don't know how I looked, but she reflected my feelings. I did not really know how to feel when something like this happened to my wife!

During the day a couple of surgeons came to explain to us what was going on. They said her brain was "angry" and was reacting by seizing up. If this continued, the brain would swell, seize up, and potentially die. We had to wait for 72 hours to see whether her brain would stabilize. If her brain died, Jan's body could continue to live thanks to the respirator, but she would be like a vegetal.

Friends continued to arrive in a steady stream during the day as well as relatives from other towns. The word had spread like a wildfire. I remember the mountains of love and support I received that day, while at the same time, I was going in a free fall inside of me.

Initially I had gone through the motions of calling the ambulance and going through ER on just adrenaline. Now, the initial shock and fear was turning into a tension. One part of me was willing to accept the comfort received from loved ones.

At the same time, another part of me was falling into a dark vortex in which I had to face dire prognosis from the surgeons; the implications of the paperwork I had to sign with the order of “do not resuscitate”, if her brain would die; the multitude of questions about this tragic event. I could not reconcile what I knew about a loving God with this incredible pain that was swelling somewhere in my core. I needed to find an explanation that would tell me why this was happening to my wife. Why her? Why now? Why didn't this God stop this from happening?

Our life together was collapsing in front of me and I could not do anything. I was having the equivalent to an emotional aneurysm. Many people told me many things. I am sure many of those words were very wise. However, blinded by pain I was unable to remember most of them. I can only remember their faces full of concern and compassion. I needed them desperately, but they seemed to be standing on the other side of thick glass wall. The only comment I remember is what Jan's dad told me "keep things in perspective". I didn't know then what he meant. Years later, his wise advice sank in.

My spiritual mentor arrived during the night. She didn't say much, rather, she walked alongside in silence while I paced in that ICU corridor. We walked shoulder to shoulder for hours. She did her work without words. Occasionally she touched my shoulder gently to let me know that she was still there. I cried bitterly in silence. Eventually, I was able to get a sense of comfort and companionship. In my darkness and desperation, I needed a light, a rock to regain my footing. Deep inside, I heard a soft but convincing voice, assuring me that I was not alone

Six years ago, my life changed forever. It had changed several times before, but not as dramatically and painfully as this time.

In hindsight, I can see that six years ago I began my graduate work in relationships. That day I began to clarify who I was and what was my purpose in life. I knew I was starting a long and difficult road in which I had to trade logic and strategy as essential tools in life for compassion, patience and totally new understanding of integrity: being one with my words and commitments.

After all, five months earlier I had told this unconscious woman in the ICU that I would love her in health and sickness... and now the opportunity to prove it to her was in front of me.

Six years ago, I began a path that has taught me how far human love can go.

I am grateful.

FC

Aphasia - a poem

2011-11-27T17:46:00.001-05:00

Aphasia.

Her words come down the corridor
undecided, bouncing off the walls
like snowflakes awaiting the avalache's
inevitable, deafening roar
she wants to share her heart's desire
she saw the perfect sentence in her mind
but her lips are rebellious and unkind,
a calcified noun hits me in the chest.
She wanted to ask me for a date,
disconcerted by unfriendly words
I chose to walk away

FC

From the Man Cave

2011-10-28T21:47:00.000-04:00

I am in the Man Cave today. This is the attic of our house. It is the place where I go when I want to draw, paint, write, read or just sleep. I am in this cave because I don't seem to understand Jan. I'm sure I am the only man who can't understand his wife (any hands up?)

I've noticed something that is becoming more noticeable since the last seizure, but maybe it was there before and I had not noticed it. Several occasions my wife has gotten upset with me because I did not hear what she said. I know that as I get older, my hearing is beginning to fade. I know that when I am concentrated doing something and Jan comes to talk to me, I exercise my very powerful power of selective hearing, and as a result I only hear a part of what she said. I know I have problems with listening to her, really listening to her, putting all my attention to what she says, and making eye contact -yes! this is indispensable if I want to let her know that I heard what she said. No eye contact in a conversation is an automatic trip to the dog house. You see?, this is a challenge, because even though she had the aneurysm, she has a photographic memory about events and details in the medium and long term memory. On the contrary, I am beginning to experience a good share of senior moments not remembering what or where I am supposed to go. So, without an excuse, every time I ask her about something, I go prepared to end in the dog house. Actually, I spend so much time there, that I should make it more comfortable...

Having said that, on several occasions when I have asked her where is she going or what is happening at a particular time, she replies: "I've told you just five minutes ago". And this is where the issue becomes more intriguing, because I review my communications for the past five minutes and often they don't include talking to her. What am I saying? That I am getting totally deaf? Not likely. What I am beginning to suspect is that she has conversations with herself, some of which include my person, but they do not necessarily come out of her mouth. These are conversations in her head. Have you talked to yourself lately? I do it all the time, and sometimes a part of these self-talk comes out of my mouth when Jan is around, so she asks, What did you said? What are you talking about? because she has only heard a fragment of the whole thing. Most times I just reply: Nothing. Which is not true, because I said something, and this takes me straight to the dog house with a sermon about telling the truth...

So, she does a lot of self-talk. The problem is that she thinks she has told me things that I have not heard. Is this a part of aphasia ( /əˈfeɪziə/) or apraxia? What system or program got knocked down with the last seizure? Every seizure kills thousands of neurons. Just like that: Puff! they are gone. The good thing is that she has a few trillions of neurons more, so she can spare some. But why the ones that allow a person to know that the words are actually being spoken rather than just thought? This is my question right now as I ponder and pace around my man cave (which serves also as a physical dog-house).

I think I need a dog because my not even my cats come up here...

FC

Seizure Five Years Later

2011-09-18T01:42:00.002-04:00

Three days ago, Jan went to an interview with a special education program to explore volunteering. She had been excited about this opportunity for quite a while. She arrived at the school office exactly at the time when the students change classrooms. The hallways suddenly filled with loud voices and young people moving fast from one room to another. Later she told me that she felt nervous by all this commotion, unsure about being surrounded by so many youngsters all of a sudden. For over twenty years she stood in the middle of the students feeling their energy, and thriving in the knowledge that she had not only authority over them, but also a deep caring for their learning. This time, however, the feeling was different: uncertainty, insecurity because she is unable to express her mind on command, overwhelmed with the noise and unable to cope with so much input (voices, people, movement) all at once.She went into the office where she had her appointment -about 20 meters from the entrance door-, she talked for a short while with the person she was meeting and then a seizure set in. She has am aura of 5 to 10 seconds when she has a seizure. This gives her enough time to find a safe place on the floor where she can lay down. then the Grand Mal (tonic-clonic) seizure starts. She will have convulsions for about 40 seconds. After the convulsions are over, she lays unconscious for 15 to 30 minutes and starts coming back to over the next hour or so. We had an appointment at 1PM that day. We were going to drive to a nearby city to see a neurologist. Her previous neurologist retired three years back and since then, she had been treated only by her family doctor, to whom she had only access three or four times a year. All of her other medical needs have been treated in walk-in clinics or hospital emergency departments who don;t have the in-depth knowledge of her case or her aneurysm. She was ready for this appointment. She had great expectations to re-start a relationship with a specialist that could help her find new paths to improve her condition.When I got home, I found several messages, one from the office where she had the seizure, another from the emergency receptionist, and a third from a friend whom Jan had named as a primary contact in case of emergency. All of them informing me that she had a seizure and was sent by ambulance to the hospital. What a sucker punch!, I thought. A very familiar feeling of dread filled my nostrils, I let the anger bubble and come out. I found myself saying in aloud voice: When is are we going to have a break? Isn't it enough to struggle day to day with all of Jan's limitations? I was very aware of the consequences for me of every seizure event, the extra time and care required, the struggle with the feelings of impotence and incompetence, the search for an extra dosage of patience to become Jan's hands and feet and words when she does not have access to them. I don't know the border line between disappointment and depression, but I found myself questioning whether I had enough faith to ask and receive the miracle of Jan's health, of wondering where were all the friends and family when we needed them most, of wondering why this happened to us? why, why why? I had to do something about all these feelings. I knew better not to bring them boiling with me to the hospital. Jan was the one in need more than me. So, I let them come out for a few minutes in shouts and tears. When I felt calmer, I drank a glass of cold water and set off to find Jan. I arrived at the hospital about three hours after she had the seizure. I found her sleeping in a hospital gown in one of those little bays with a curtain. All her neighbors looked in bad shape as well as their visitors. Most of them seniors. Jan woke up when I pulled a chair next to her bed. A expression of disappointment mixed with fatigue covered her face. Slowly, she told me sketchy information about how she was feeling. I tried to be reassuring, although I always feel inadequate to soothe either her disappointment or her pain. At first, she could not remember where she was when the seizure happened. She complained of a headache. Eventually, a nurse showed up with equipment to take an ECG and some samples of blood. I gathered through the grimace on Jan's face, that the blood sampling was painful, this on top of the headache she already had. We asked the nurse for some painkillers, but she said that only her nurse could give her some pills to block the pain. To Jan's relief, he pills came a short time later.The nurse at the hospital had told her that her seizure lasted three to four minutes. She thought this was unusual since most other events lasted less than a minute.This upset her because she was feeling also extremely fatigued.About an hour later, her memory started functioning and she could remember where she was and what she was doing when the seizure took place. She even remember that she had parked her bike in front of the school, among the student's bikes. I went on a hunt for her bike, without success, luckily a friend had taken her bike in her van and dropped it later at the house. A few hours later, the emergency doctor came to see Jan. The results from the ECG were negative, so he suggested to keep Jan under observation for a few more hours. Jan, of course objected, arguing that she would be better at home. I told the doctor that we had to reschedule an appointment with the specialist because of the seizure, and that we hoped he would have more answers. He agreed with us and promised to send the info to the family doctor.We went home and Jan went to sleep early. This was a familiar scene from many other events.I could not sleep for a while, thinking about the meaning of this seizure and all of its implications. I was ready to quit my role of a caregiver. At the same time I was reminded of my pledge to love my friend and wife, especially when she needed me the most. Yeah, if God abandoned me when I needed his presence the most, probably I would not be around. I told God that I really did not know how this suffering business worked, but that I trusted that he knew why and would be gracious to us. I honestly could not feel thankful, my grief was painted with disappointment. Slowly, my eyes closed and I fell into an uneasy sleep full of strange dreams.Jan and I had have a seizure and the road was going to be uphill in the next few days...FC

trustworthiness

2010-10-14T01:50:00.000-04:00

When I am in pain observing Jan being in pain, I question everything, from the very purpose of life to the links between what is happening to us and what we have done in our past. I raise questions about the God of the settled accounts. I size the limitations of my understanding of grace, and ask why has God abandoned us? Pain has a way to shake up the trust on my core beliefs. At the same time, pain has a way to clarify that which is essential from the unimportant. I find that trust is one of the essential blocks of relationship. I take a position to the world around me to be able to react and adapt. I must trust that what I perceive or what I know is the correct information to take a stand in life. But trust is not the only position I can take in life. I can also distrust, that is, question what I perceive or know. We are relational beings. We were designed to live life in relationship. Every addition we have made to the original design has been in response to this relational directive. It is written in our DNA to relate. Art, society, religion, knowledge of the world and of self are all results of relational thinking. It is by relating that I find who I am in the world. It is by relating that I understand the feelings and flavors of life. It is through relationships that I learn the basis of right from wrong, it is by relating that I can transform my world and impact the rest of the world. It is by relating that I also learn to trust with those objects and events that show up in my experience in a reliable manner.So, the first sign of trust is trust in what I perceive. Then, through relationship I learn other more subtle forms of trust and mistrust. The latter I call questioning and we have made it a pillar in what we call knowledge. The positivist view of science, proposes to question everything we perceive, to not take for granted what happens in the world, but to observe it in a detached manner and then systematically test this knowledge. The problem with this view is that there is no such as thing as a "detached view" of life. We are all in it up to our necks. With all the techniques of tranference and contratransference that analysts use, they are humans deep involved in life and somehow being impacted in unkown ways by their patients. I can't be detached from what is happening to Jan and see her in a detached way. If I want to relate to her in a trusting manner, I need to begin with this assumption that we are both muddy and immersed in each other realities more than what we know or imagine. Because we have somehow become one as a couple, I need to trust myself before I can trust her. This goes along with what Jesus asked from his disciples: love others as you love yourself. We are the first measure of love and trust. We I don't have self love or self trust I will have trouble trusting Jan and those around me.I have observed a lot of pain in the past five years. I have experienced a lot of pain too, I have learned to adapt and assimilate mny own pain. As a matter of fact, I have learned that pain is an integral part of life. And it is this acceptance that has moved me ahead in the path of maturity (this is what S. Peck says in the Road Less Travelled). so I don't spend anylonger all this energy and resources in trying to kill pain with all sorts of pain killers (chemical, financial, etc), instead, I am learning to understand the pain, where it came from, whether it will go away or not, and how am I going to continue living my life with or without this pain.I have trusted a lot these past five years. And I have lost my trust many times as well. I have been happy and thankful with God, Jan, friends and I have been utterly dissapointed with all fo them sometimes. But all in all, I seem to come back to to this default position of trusting. I want ot believe that there was a tranformation in my deepest self that occurred at somepoint in time and a seed of trust was planted then. Storms, and drought have cut off the plant of trust many times, but the roots remain. Today, Jan is agonizing with pain. I can't even imagine whas she feels. So, I choose to trust and sit quietly next to her hoping that somehow, the warmth of love will soothe her pain.

Caregiving as healing

2009-12-09T22:07:00.002-05:00

The role of care-giver has been traditionally assigned to the health professionals that care for someone as long as this person is receiving some form of institutional health care. Only very recently, the care-giving provided by family members has began to be taken into account, but even then, it is seen only as providing ancillary services to the patient, especially when the patient has been sent home after a stay in a hospital.

Health professionals bring their knowledge and apply it to the patient, hoping to provide in most cases some healing or rehabilitation. But regardless of how well a patient is sent home, there is the loved one [...]

"Healing is the result of love. It is a function of love. Wherever there is love, there is healing. And wherever there is no love, there is precious little -if any- healing" wrote M. S. Peck (p.44, The People of the Lie, 1983).

I often wonder how much of Jan's healing -about which which all health professionals have confessed to not know how Jan's brain does it- is related to the loving care she has received from friends and family, independently from all the medical treatments to which she has been subjected.

[...]

The good and the bad without the ugly

2009-12-07T06:28:00.002-05:00

In my relationship with my wife, I alternate between feeling some days like a teddy bear and other days like a dog. Some days, I seem to just do and say the right things that will get a lot of appreciation from her. Those days I am treated like a teddy bear. I am hugged, and kissed, I am cuddled, get a hot cup of chocolate and even some brownies. Other days, no matter how hard I try, I seem not to be able to get a syllable across, instead, I hear all the things that I have done wrong since I was born. Those days I am sent straight to the dog's house and I am given the silent treatment for hours on end. Those days, I feel like a dog.

While she was in the hospital, someone gave her a little soft, bean-filled, brown, barking dog (batteries not included). The dog sits with its face looking up to you and has a broad smile of its face. The best of it is its little tail. It looks as if it is ready to wag for any reason. I can't say that its just a dog, because it really is a beautiful little stuffed dog. My wife liked it so much that she kept it in her toys collection all this time.

Another person brought as a present a beautiful white teddy bear with black eyes. Its body is soft, its features resemble those of little children and call up a reaction of tenderness. The best part of teddy is its brown button nose, barely noticeable when it is sitting up.

These toys made me think of the opposite extremes of my experience as a care giver with my wife.

Some days I am a dog and other days a teddy bear.

FC

Helping out

2009-11-30T10:35:00.026-05:00

One of the actions that brings me much satisfaction is the opportunity to help others. Jan is the same, she volunteers one day a week in the office of Runnymede United and one day a week with the Saint James Anglican food bank. We have the same values on this area: we are only administrators of what we have. Nothing of what we possess really belong to us. It belongs to God and we have these goods to administer them for the benefit of our immediate family and others. This is our the law of love works. We take care of others and others will take care of us. But in our broken world everyone seems to be looking for themselves,s o many are left without someone to look after them.

I can see this value at the core of what Jan is. Unfortunately, as much as she tries to give, that by itself does not mean that she will receive back the same courtesies or help. It is not a complaint. It is a fact. One area in which this brokenness shows up is in her friends. As time goes by, she counts fewer and fewer friends to visit and to just do what friends do: hang out. Because of this, one of her big struggles is with loneliness.

What are we going to do to fix teh broken law of love? Help out. that's all we can do.

FC

suffering-2

2009-11-25T23:41:00.000-05:00

When I think of suffering on my side, not taking into account any of Janita's challenges, I think that broken communication tops the rest.

I suffer when I am having a conversation with her and in less than two minutes flat, she is feeling attacked by my questions and I am feeling misunderstood and judged as a careless, insensitive, ignorant, idiot man!

Negotiating everyday decisions that we must make gives me most of the time a great apprehension. I have learned to expect a huge war when we have to discuss various options to an otherwise insignificant issue.

Here is an example:

she: -I need to eat soon! (she suffers from something that looks like hypoglycemia) I need to eat.
me: -OK, I'll prepare some lunch.
she: -I need to call the place where hey sell Christmas trees. I can;t find the number. I need your help.
me: -I'm busy with lunch right now, can we make the call later?
she: -No, I want to make the call now. (She goes and find the phone book and starts looking for the number. A few minutes later she calls me.) I can't find the number! You don't want to help me. I need a man that has compassion and helps me.
me (beginning to feel impatient): -Why can't we wait until after lunch to make the call? Here, let me see the phone book... Here it is! I will call them... (Hello? I would like to know your hours of service...thanks. While I am talking she asks me to get prices... I really hate that someone talks to me while I am on the phone in another conversation, so I selectively tune her out).
she (just a second after I hang up): -I wanted you to ask for the price. I told you four times but you never listen. Why do you hate me so much? Why are you so angry at me? I can't take it anymore!.
me: (without answering her complaint I go the kitchen to make sure nothing is burning, and serve lunch) Lunch is ready! Come and eat. I thought you needed to eat right away! That is what you told me.
She comes and sits in silence with an expression on her face of utter disappointment, almost rage. She takes a couple of spoons of food and stops. Then she says: -I don't why you hate me so much. I asked you four times to get the price. Instead, I had to call. I have aneurysm, I can't talk. It's really hard for me to talk on the phone. It was easy for you to do it, but you hate me and don't want to do anything for me. Now you are silent, You are angry at me for asking you for something.
me: -but...
she: -you see? you interrupted me. You don't care for me.
She starts crying hard. I try to explain that I felt pulled in many directions at the same time. I thought the most important thing was to have lunch ready and then we could make the call...She cries even harder. Suddenly she stands up, throws herself on the floor and continues crying, saying in a loud voice: -Why, why Lord, why is he so hateful? Why he doesn't want to help me?

After a while, I helped her to the sofa. She is unsteady and can't talk. She show the same symptoms as when she has had a seizure. The day is shot. All plans are thrown in the garbage. We will spend the day in painful silence.

I feel guilty for having punched her buttons and make her react this way. I am concerned that she will have a seizure if she does not control her emotions. My confidence gets shaky. I begin to agree with her that probably I am the worst caregiver on the planet, that she would be better of if I disappeared...
I asked myself: What am I doing here? Why do I have to put up with this suffering? I see her suffering and I cannot even help her because mine is overwhelming. What is the use of having two people crippled by pain, uncertainty and a very feeble communication that is made worse by her aphasia? I feel we are in a path of assured mutual destruction, and my mind tells me that this idea is as ludicrous as when Reagan made it policy is the US. I thought I stayed with her because I love her, but clearly she does not see or even hears any of what I do as love. I feel I am at the edge of a pit of despair. Stripped naked of my loving intentions, unable to communicate in a meaningful way with her, without sufficient patience and caring, I am sliding down; a great dark feeling of disappointment, of insufficiency covers my heart and my mind. I escape the only way I know it's the least self-destructive: sleeping.

Suffering for me is the death of my hopes of having a healthy and happy marriage. Suffering is realizing that the woman I married is trapped inside of a body with a broken brain, and that I am no prince or I can't set on a quest that will bring her out of this situation; that her brain will have to do most of the work without my help. I suffer when I realize my inadequacy to help her the way she needs to be helped. I suffer when I see most friends quietly disappearing from her day book. I suffer when I realize I don't have any answers to her questions, nor most of the medical practitioners we have seen. This is way beyond human comprehension, so I acknowledge that this belongs to to realm of faith and divine intervention. I suffer when I realize that my faith is weak like a bag full of holes. Suffering is acknowledging my powerlessness.

Then again, maybe when I am at the end of my rope, is when I can learn to look for God.

FC

The nature of suffering -1

2009-11-12T23:16:00.019-05:00

One of the hardest experiences as a caregiver is to accompany Jan to a Doctor's appointment only to verify that the Doctor is dealing, talking and relating to the "illness" rather to the person. Jan picks up on this and reacts angrily, and having some damage to her frontal lobe cortex, she cannot control her emotions or the way the show up. I probably feel the same way, but I keep my emotions in check and act with civility towards the doctors. I am beginning to rethink often my reactions and I am wondering if I it would be more honest to just let the doctors have it from both, Jan and I. Where did the clinicians got the idea that what they are seeing is an illness and not a suffering person? Some get it. Our family doctor, a young woman from Middle-eastern background, is one of the few that actually looks Jan in the eyes instead of fixing her attention to the chart.

What is more important in our health care system, the cure for an illness of the care of the patient (the sufferer)? I don't know what most people think when they organize marches, walks, runs and many other ways of fund-raising for cancer, diabetes, blindness, when the reality is that there is no cancer, but a person suffering from cancer, etc. Is it that in this large health organizations we have lost the person and got stuck with illnesses? As a sociologist said a half a century ago about the pervasive positivism in social sciences that emphasized more the quantification of social life over the persons: Bring people back in! The same can be said for the health sciences, maybe a little less science and more caring for suffering human beings would do more.

I hope that the way our family doctor relate to Jan is not an anomaly but rather the new paradigm of clinical practice. Once she told a neurosurgeon when he was talking to me about her while she was sitting next to me: "Why don't you ask me, I am a human being also!"

FC

A christmas carol

2009-11-06T00:45:00.000-05:00

We went tonight to hear a marvelous reading of the old Dicken's story. Runnymede United seems to have a great production team and the volunteer musicians, readers, organizers, singers, etc, put on a how that can compete with the professionals.

I saw her laughing, and rocking her body to the music. This was ointment for my tired soul. To know that after the storms, there are sunny skies. I just have to have enough patience to wait for them.

FC

When the birds fly south

2009-11-05T17:29:00.111-05:00

The migration of birds is as fascinating as what happens to Jan after a seizure. I am always amazed at the precision of the bird's flight plans. They know when to start the trip, where the food stops are, where they can catch the best tail winds, where they are headed and most importantly, when and how to get back home. The same goes for butterflies and I don't know how many other animals that year after year do the same trip, never getting lost. The migration chip and all the navigational equipment necessary is in place to do what they are programmed to do.

I observe the same meticulous precision in the workings of Jan's brain. Even with an injury, her brain maintains the same navigational tools that guide her all the way back from the land of Oz where she is tossed by a seizure, to the state we call "normal". Like Dorothy, Jan is overpowered by a force stronger than herself, which seizes her and throws her far, far away from what is familiar and clear, to a place of haze where her body stops following her commands and her words, well, say whatever they want, but not exactly what Jan means.

But the trip to Oz is more frightening than fascinating. Everything that should be under control, suddenly is out of control: movement, balance, self-control, speech, consciousness. What amazes me always is the sequence in which her functions reboot. first the consciousness, then the speech, then the strength, then the balance. Precise, like the flight of the birds migrating to the south in late Fall. In a few days, she is back to where she left. Her progress is more like three steps forward and one step back.

Her brain works hard all the time, looking for new paths, looking for the right words to express her thoughts, she didn't really loose the words, what the aneurysm did was to toss all her neatly organized lexicon all over, so when she is looking for a particular word, the task for her is like trying to find the one card in a mountain of disorganized cards, each with one word.

I don't know how her brain actually traces new paths all the time. But I see clearly how it works around and above the damage to bring Jan back in touch with her world. Thank God he created her brain in such a way that it is rebuilding itself.

FC

re-occurence

2009-10-26T01:11:00.002-04:00

On Saturday Jan went to the emergency room because of symptoms that indicated a re-occurrence of a retinal detachment. If this is not treated quickly, it can lead to total blindness. This was sufficient warning to make the decision. The choice was to go to the hospital or to go to a conference from a famous doctor who had also an aneurysm years ago and was able to recuperate most of the functions she lost.

I am in a tight corner wondering what will I do if Jan becomes blind. As is, the caregiving is large and costly in more ways than financial. I can't even picture what would I do if this were to happen. For the first time I feel that I have run out of the capacity to visualize the future...

Yet, the commitment to stay and support this woman that is beginning to look like a total stranger to me, is still there. However, I struggle with unanswered questions and divided emotions. I wonder whether I am wading close to the edge of myself, and if I continue in the same direction, I will find myself in nothing else than a void. I feel I have aged a century in only four years.

I know I am not alone in this. I know this is where faith is supposed to work. I know that many people support in silent prayer and those who lack the prayer wire, send positive thoughts. I know I am disappointed more with myself and my expectations about how all this should work rather than with others and God. I know I am walking on water deep inside an unknown ocean of pain and uncertainty. I know. But this is not much comfort in the middle of this, my personal tsunami.

FC

Shell-shocked

2009-10-25T05:15:00.000-04:00

In the last blog Janita and I went to the emergency room of a hospital. We got to see an eye doctor close to 11pm, a young man in his early thirties. he did extensive tests on her eye pressure, and looked inside of Janitas' eye thoroughly for quite a bit of time. At the end , what he saw was that the jelly matter inside the eye is detaching from the retina, but is not tearing it. This is why she is having all these symptoms of floating circles, golden and silver, and those flashes in her vision along with moving black bars. He asked her to come back in 6 weeks for a follow up. If something would change she was instructed to go immediately to the eye doctor on call. She said she felt both, relieved and sad. It was better to know what was happening and to hear that there are experiments with humans using stem cells to regenerate optic nerves that may give a hope for her right eye, the one that can only see about 10% of the field of vision. It may also give hope for her retina in the left eye, if it continues detaching. So, this hope that there may be a solution one day, gave her some relief. On the other hand, the very thought of being blind made her feel sad. Too many questions about the new challenges that this would represent for both. She would need to learn Braille, and to function without vision. I would need to change my heart and my whole set of values and assumptions about what is marriage and what is care-giving.

No one has ever told me that life would be without pain. No one promised me that. So I don't have anyone to whom I can direct my anger and disappointment. The only option I have is to acknowledge it and to look for ways of changing it into a constructive energy in my day to day life before it turns into bitterness, cynicism and despair. Where are thou my brother? Where are thou my God?

An adjective that comes to mind, that I would like to hang around my neck is: shell-shocked.

FC

Silence is golden

2009-10-10T00:51:00.000-04:00

I almost lost my voice yesterday to a strange cold. I sounded like Leonard Cohen. But being forced to speak a lot less was enlightening. I was able to listen more, to interrupt less, to communicate more with body language, to agree more, to think more before saying anything, to relax and just take all in.

Maybe I should take a monthly day of silence...

A good rainy day

2009-10-02T12:52:00.001-04:00

I worked late in a manuscript ready for the printers. My only company was Clayderman's renditions of Beatles music. 3am arrived and I felt satisfied having found more "bugs" in the manuscript. It will never be perfect, but now it feels like an excellent piece of work. I'm sure Pablo will feel satisfied. A few minor additions to round up stories and weave them into the whole piece will make it a fine piece. I was chilled and wondering whether I would be able to sleep after the instant coffee (aaarrrgghh! I know, but that's all I could find at midnight, other than collecting the leftovers from the tea cups in the sink to make one full cup, which didn't sound appealing, not even to work on a fine manuscript). I placed my ear to the pillow and snugged tightly against Jan's side. She felt warm and cozy. I though about the word home. She was my home right there. I kept focusing my thoughts on one concept at a time: love, Jan's love, God's love, my sibling's love, my friends' love, love without a definition, love as a person, love with a face and a name. I thought about the colour that most likely represented love for me. I thought about the nature of love, its actions, its cost, its consequences. I thought of Jesu. I felt calm inside and warm. I drifted slowly into a bright fog, or was it dark? I can't remember and I think it doesn't matter. I was deeply asleep, and I can't remember moving until 8:34am this morning, when nature called..

Jan is feeling better today. But she had two bad days. So the score seems to be two bad for one good. I reminded myself of my commitment to do at least one act of random kindness for Jan every day. I held her close when she felt overwhelmed. No questions asked. She knew what she needed to know.
FC

Three emergency rooms and the elusive MRI

2009-09-29T12:56:00.001-04:00

Sent by her aunt to the emergency room of the Veteran's Memorial Hospital in Orillia, Jan had to end abruptly her plan to have a quiet by herself. Monday morning, she seemed disoriented and without balance. They thought it was a stroke so they rushed her to the hospital. She spend a few hours there, then, the ER staff decided she was suffering from dizziness because of an internal ear malfunction, not because of her brain and discharged her with some medication for vertigo. Mom picked her up late in the afternoon and took her with her to her place where they spent the night.

The next day they went to Uncle Lorn's to get a ride to TO. He was making the trip to see a trailer north of the city. They arrived in TO in the afternoon; Jan looked relaxed although the vertigo was visible and her speech was hard to understand. We had lunch together and then Uncle Lorn and his wife left. Jan slept the rest of the day, and much of the following days.

The Saturday, after having a strong emotional reaction, I took her to the emergency room at Toronto Western. The neurologist gave Jan a test sitting her and then asking her to drop on her back into his hands, where he turned her head quickly to one side and then the other. He said that the problem was something in the inner ear, floating and exciting the nerves sending the wrong signals to the brain and producing the vertigo. This should fix by itself in a few days or a few weeks. So she was back home the same day, feeling the same despite the answers.

The following week We went to see Dr.F. Haq, the replacement for the family doctor, to whom Jan has taken a liking (Jan has become a bit selective). She ordered Jan to stop the vertigo medication immediately, and ask Jan to follow up on the MRI at Sunnybrook since they are the only one who do this on Jan. In the past we have fought long battles with the radiologists at TO Western where they refuse to do an MRI because her operation notes do not indicate the type and serial number of the clip Jan has in her brain. So, every time she needs an MRI, we have to go to the hospital where she had her operation.

Jan is still dizzy, she has not had her scan done yet, we don't know why she is not feeling better after the seizure over a week ago, we don't know if something else is going on in there, we don't what all this means. Are these the blunt strokes of God's chisel on our lives? Are we being shaped into better persons through this pain? what if in the process of being perfected we are destroyed?

A wedding and a seizure

2009-09-14T13:19:00.000-04:00

Yes, big events have a way of flocking together into our lives like Canadian geese. Except, for us there is no migration out of the cold. At least, no yet.

I went camping with Jan on Sep 12, to be at John and Carol's wedding. This was happening at a camp next to Bass Lake. John, Jan's Dad, is in his early seventies, but that was of no significance for him and his bride to be to married at the beach in picnic shelter at Camp Lake Bass. Beautiful setting, but I had only seen young people do this back in the 1960s. Anyway, maybe this was for them a trip to the "good'old" days. Kind'a romantic, in a way.

We pulled into the camp Friday night, and with some difficulty, and lots of help from Jan and Mom, I was able to set the tent and get the things ready for the night. I could not find the matches to start the fire, so we went to Dad's camping place to share the warmth around the fire. After a while, we went back to our camping spot and started our attempt at having a reasonable night's sleep. It didn't work. I didn't have a pillow, so, I could nor find the right position to fall asleep. Turned and turned until I lost consciousness. Jan got chilled all through the night, in spite of lots of blankets and sleeping bags. Not a good sleep for both.

In the morning, feeling damp and smelly, I wanted to take a shower. Jan knew where the showers were but could not tell me, she was having problems with her speech. Jan has been camping in this park since she was little. With no more directions that "follow the path" (I noticed that there were more than a dozen paths), I went on in my adventure. It was around 8am. and Jan looked tired, not having slept well. It took me about a half hour to find the showers, and then, I quickly used a very wet and impractical shower room. Even though my clothes were hanging on a hook on the wall, the got wet. I put on my soggy clothes and found my way back.

When I arrived at the camp site I found Jan on the ground under the cherry tree in front of the car. She was semi-unconscious laying on her right side. I knew immediately that she had had a seizure while I was gone. I felt upset with myself for leaving her alone. If I had been here... but I know well that nothing would have been different, except that we may have had a chance to go back to the tent before the onset of the seizure. She was grunting. How quickly dignity and propriety dissapear in these circumstances. I Took her head and placed it in my left arm while I was trying to put her left arm around my shoulder and lift her by the waist with my other hand. I don't know how I managed to bring her back to the tent, about three meters away. I placed her on the inflatable mattress and covered her. She was beginning to come to. I asked her if she wanted me to call an ambulance. She said OK. I told her I was going across the road to look for her aunt Mary and Glenn, her husband to ask them for help. they came and after a while, Jan felt a bit better and decided to stay. She really wanted to be part of the wedding ceremony. I don't know where she found the strength, but she got dressed and we attended the ceremony. Jan was leaning against my shoulder all the time, unable to stand by herself, and at lunch time she took a nap on one of the picnic benches.

What marked a new beginning for her Dad was marked for me with a reminder that I have a long road full of uncertainty and illness ahead of me.

shifting

2009-09-13T22:05:00.003-04:00

I don't know were I lost the grip and skidded onto this dark alley. I am not sure what is the feeling that I see bubbling on the surface of my consciousness, raw, sour, antithetical to the dream I had been carrying on my backpack. I am at a loss to explain what was lost, and what is the same after the "great catastrophe". So, I just sat this evening in my backyard, feeling alone in a long time, looking at a sunset that somehow was telling me to hold onto the memories of the bright moments, the commitments, the laughter, and do away with the gloomy thoughts that kept clouding my heart.

the question of wellness

2009-09-10T09:51:00.009-04:00

what is wellness?

For almost four years, I have struggled with this basic question. I realize that my struggle has less to do with the physiological variables of this equation than with the ontological, or even with the theological ones.

Am I well (or well-off) if I possess material things? Is it true that the wealthier I am, the happier I am? This is one of the few persistent myths of all time. However, in spite of the ample evidence that wealth does not bring happiness, that those who have a lot, also suffer a lot, in particular of the rich's -paranoia, the always present suspicion that everyone else is after their possessions, and the inability to build trust because of the underlying paranoia. Most, and I include myself in this, continue dreaming that if only I won the lottery, if I had plenty of money, then, I would... as the song says: "if I had a million dollars, I would buy you a dress..."

So, being well-off may also mean being cut-off from the others, unable to relate freely and trust totally. That which is supposed to bring me freedom ends being the prison that isolates me from the rest.

This is the irony, most likely well-off means being off-well, whatever wellness means.

Am I well if my body is healthy? that is, I have no illness of any kind?
I don't think I am just because I think. I don't think I am well just because I declare it so. Rather, I think I am because I can love, relate, believe, and I am well only because I

For the allopathic doctors (most of the health system in Canada), Jan would be well if she could agree to take the medications they have prescribed to control unwanted disorders. They agree that controlling the symptoms is not a definitive solution, but in a system where they agree to be basically "pill pushers", there is little they can do to search for therapies that would help Jan develop the functions that were most affected by the aneurysm.

Rehab for Jan, covered by our health care system, meant speech, physical and occupational therapies for 2 months as an in-patient and 4 more months as an out-patient. That's it. After that, any therapy she wanted to receive would be out-of-pocket. So she is not well because she is not well-off, but would she be well if money was not the issue?

Maybe not.

I remember

2009-07-31T14:59:00.001-04:00

I Remember

I remember the intensity of her gaze
the round, full, copious words she offered
and her laughter, those rivers of laughter
cascading like the morning sun
on my dry and lonely soul.

I remember her flowing hair
playing freely with the wind,
we sang, we walked, we wrote,
Oh, how we talked!
Oh, how we dreamed!

I remember our hands entwined,
her blithe manner full of light,
and then a hug, and then a smile,
and then light slashing through the dark
through that one crack on my wall

I remember opening our hearts
to this brilliant miracle of life.
Basking in this boundless love
we were eagles soaring high,
way high in an cloudless sky

I remember whispering a hope,
the innocent brainchild that love
would always shelter us from pain,
its light would shine the dark away,
when the voice of blood said: No!

I remember her life next to the abyss
while the long fingers of blood
were writing something on her brain,
unconscious, she was free of pain,
while I stumbled in my own

I remember the scars on his hands
while he held mine in a caring clasp,
I was brokenhearted, feeling smashed,
I saw a thousand cracks spreading on my wall,
and an unyielding light seeping through them all

He said, it was through pain that he’d showed love
and walking into the abyss that he brought life.
I remember my darkness slowly turning into joy,
regardless of her broken words...

F. Carrillo

Seizure

2009-07-10T00:40:00.002-04:00

Six months and two days. That's the record for now. For the first two and a half years the seizures happened once every three months.

I feel disappointed because with a new event, Jan's hope of driving one day moves further into the future. She has to be free of seizures for one year to be able to take again the driving test and obtain a license. Her freedom of movement is on hold, although she can move in the public transit very well.

This time it happened as we were having breakfast. She began chanting as she does when she feels an aura. Five seconds later she sprang to her feet and went to the sink facing the window and continued singing, this time louder. Within 5 or 6 seconds she turned towards me with arms outstretched and began the seizure standing! I run to her and clutched my arms around her waist. I was afraid she would collapse and hurt herself. But her body was already rigid and the shaking began in seconds. I lifted her and carried her to the bedroom. I had to negotiate the doors because her arms remained in an outstretched position. I placed her on the bed and waited about a minute and a half until the seizure stopped. She was unconscious for about three minutes and then opened her eyes, but she didn’t really see anything. Hey eyes were fixed in space. She was moaning. I covered her and wiped her saliva from her face. About five minutes later, she was back, she was conscious again. She could follow my movements and shifted her body to a more comfortable position by herself. She could not talk for about an hour. She began crying more out of disappointment than out of pain. I brought some tea and lay there with her for about 20 minutes, until she fell asleep.

I had mixed feelings the rest of the day. On the one hand, I felt more decisive in my reactions and decisions during and after the seizure; on the other hand, I was pained to see my wife suffering like this. Waves of compassion and sadness came and went. I did not struggle anymore with the feeling of powerlessness I used to have. I did not argue with God or asked the usual why? I felt some resignation, and wondered what was the meaning of all this, was this a way to test our individual faith and resilience? Is this the “wilderness” we have to endure in order to be ready? I felt tired.

About two hours later, Jan woke up and said she was feeling fine. She thought that the recovery time was getting shorter, however, later in the day she felt again weak and dizzy.

We count our blessings –including the aneurysm and the aftermath- I know that we have been given wonderful lives, I just have to find the strength to focus on the blessings and not on the illness. Tough goal.

FC

Almost six months seizure free

2009-06-16T11:16:00.002-04:00

In two weeks it will be six months since the last time Jan had a seizure. The diagnosis of epileptic seizures is for a patient a life sentence. Jan was sentenced to take medication for life, because she had seizures. She was told that the condition in her case, was permanent, because an EEG showed most of the seizure activity happening in the scarred area of her brain, and scars in the brain are permanent.

But Jan decided to sing away the seizures. She thinks that since the music is in the right side of the brain, and that side is the healthy part, whenever a seizure threatened to start, she would move all activity to the good part by singing. If a seizure is like a short circuit caused by electricity going the wrong way, then she would disconnect the problem area and use up the extra electricity in the healthy side. That's Jan strategy. And, well, it's almost six months without a seizure -after many close calls-. The neurologists told her several times that no one can control seizures from happening. That may be true for most people, but Jan belongs to a different kind of people. She is one that does not take no for an answer.

What is really happening here? No one in the scientific community knows for certain. Jan is certain that God is healing her, just as it was promised to her at the beginning.

Take your pick of paths. Jan is choosing her faith.

FC

Four months and counting

2009-05-03T23:22:00.003-04:00

Jan has been free of seizures for 120 days! Hurray!

The past three years, Jan saw a cycle of 90 days in which regardless of whether she was on anti seizure medication or not, she would experience one per cycle. Almost to the day. Somehow, she has changed the periodicity of these events and its four months and counting...

inside an emotion

2009-04-01T20:03:00.006-04:00

I don't think there is someone we could call the "typical man", because every man is so different from the next, so I am careful about making any generalizations based on gender. Having said that, I recognize that in relation to women, men do share common traits and one of them is not knowing well their emotions (I can hear the women readers saying: Yes! while drawing a clenched fist down to the side).

OK, women have more practice than men in being in touch and communicating through their emotions. They have a headstart because they learn this from a very early age. On this count, I have to admit that I have a lot of work to do with my emotions. For a long time, I had little connection to my feelings. It is not that I didn't feel anything; rather, I lacked the language to describe what I was feeling. So, when I felt down and out, I could not tell if it was boredom, sadness, depression, loss, anger, disappointment, grief, hunger or just plain tiredness.

Not understanding what I feel, nor knowing what to do about it, is like driving a car without a dashboard, and without any gages or indicators to tell me how much fuel or oil the engine has, or how fast or slow I am driving. And I can go on for a while without any gages, that is, until I run our of gas, or blow out the engine for lack of oil, or … you get the picture.

In a way, that is what happened to me. The past decade in my life has been full of lessons about my emotions. During these years I have experienced deep losses and have been compelled to really look at and understand my emotions in a way that I had never done before.

One of the lessons I learned is that emotions are very important in life. The emotions I experience and the emotions I raise in those around me can make or break my life. Another lesson is that I must learn to master my emotions, not to control or repress them, but to master them. I know now that control is about bringing something not rational under the power of reason. The “stiff-upper-lip” culture is a good example of control: bring the irrational explosions of emotion under the dominion of the reason. To master an emotion I must be able to understand it, acknowledge its presence and internalize its message.

Now, I treat feelings very seriously. I see them as an integral part of communication, of relating to life.

I know that I cannot relate to Jan if I am not aware of my and her emotions. Part of her brain injury affected the area where raw emotions are filtered and the choice of appropriate responses happens. I realize that she does not filter raw emotions nor can she always “take perspective”. Any small irritation like a loud sound, a “tone” of voice she dislikes, or a gesture, will trigger a raw emotion in her that will come out magnified. She seems to be aware of her responses all the time, however, sometimes she cannot keep things into perspective and will react disproportionately.

My emotional reactions have been tested to the limit many times. Sometimes I get hooked, and take things personally, I lose perspective and end up having unnecessary conflict with Jan. She feels hurt, I feel treated unfairly and the day is lost in distance, silence and recrimination.

I am working hard to expand that space between what she says or does that I may interpret as hurtful, and my reaction to it. V. Frankel called this space freedom: the distance between any input and my reaction. Some days I am truly free in my relation with Jan, when my emotions connect with hers. Other days, I am a prisoner in the solitary cell that my unchecked emotions build.

Jan too is learning that she can master her emotions. That she does not need to heed all emotions her amygdala produces. She is learning to keep things in perspective. In the meantime, when the emotional going gets rough, we both suffer together.

FC

dreams2

2009-03-27T19:40:00.009-04:00

When Jan was in a coma, connected to a respirator, one of the surgeons came and told me "the brain is a selfish organ, it will disconnect every part of the body, practically killing it, before it disconnects itself." While Jan's brain had disconnected her right side and turned the consciousness switch off, the machine whirred and beeped incessantly, indicating with little lights, bouncing up and down on a screen, that Jan's body was well and here... but where was her mind, her soul?

She insists that she was with the Lord. Not dreaming in the strict sense of the word, but literally, she had become disconnected from her body and was in an out of body experience visiting the no-place, no-time, no-matter and no-worries world.

Perhaps the most important insight from her trip was the choice she had to make between going on into her home in this new reality, or coming back to do a job for the Lord: helping his persecuted brothers and sisters.

Of course, she chose to come back.

=============

The other day, she was thinking about a promise made to her in the hospital by pastor Jim from Milton. Jim and the group of friends didn't get a chance to see Jan, she was sleeping at the time they arrived. But that didn't stop anyone from praying and singing for Jan. We went to the chapel and there Jim said he had a message for Jan. He said he hadn't deliver this kind of messages and was a bit hesitant at first to give the message, but several times during the previous days, the Lord gently convinced him to just speak it out. The message was a statement from the story of the Sunnammite woman, whose son had been brought back to life by Elisha. When, years later, after a great famine in the land, she came to the king to ask for her house and lands back, the king was hearing the story about the boy being brought back to life. He heard her case and then told his officials: "everything that belongs to this woman will be restored". This was the message delivered to Jan. Three years later, she was sitting in front of her piano and began playing very animated "a castle in the clouds" from Les Miserables.

From where I stand, that promise is being fulfilled. There is still some way to go, but definitely, she is getting back what belonged to her before, and for this, all the honour and applause belongs to the Lord. He is faithful to his word.

FC

Dreams

2009-03-07T23:58:00.002-05:00

During the first few days after the aneurysm, Jan went into a coma. She survived connected to a respirator --a machine that kept all her vital functions going--, while her brain decided what to do with the tremendous trauma it had suffered. In this comatose state, Jan had a series of dreams. She recalls them with amazing clarity and she uses the content of her dreams in her everyday life.

Much has been said about dreams. Since the days of Genesis, men and women dreamed. God spoke to both through dreams. Jan believes that little has changed in relation to dreams. The only difference may be that today we are too busy looking for advice from Dr. "Fee" instead of paying attention to what our own spirit is hearing. So I thought you would be interested in hearing some of these dreams.

Feb 11, a new beginning

2009-02-11T18:50:00.003-05:00

A new beginning.

Jan's aneurysm was the end of a way of life and a way of expression of who she is; but is was also a new beginning, a start into a new life full of insight and access to those hidden parts of life that are more important than the parts we see, the ones we display every day of our lives.

This new life includes pain, in a greater measure than in the one before; the newness is that instead of running away from it, we have learned to embrace it. Embracing suffering is a step towards the light and true life. Far from becoming a masochistic choice, it is a way of chiseling down the overrated ego and allowing a greater space for our spirit to soar.

This new life includes a broken language, that piece of Jan of which she was so proud, where she was so strong. But limited vocabulary or broken semantics has only deepened our capacity to communicate at deeper levels. Those who know, say that words are a small portion of our communication. Aphasia, then, has been a precious gift to us, because we are learning to focus on the non-verbal to communicate.

This new life includes uncertainty, where the future is unknown, the options apparently more limited. Yet, we believe we have never been as free, as unencumbered as we are today. I understand for the first time what it is to really trust in God, to come to the place where I don't pay attention to my wants or needs, but rather to the gentle nudges of the Lord of life, as we are guided into open spaces with less of our self-sufficiency and a clearer understanding of how God works.

3 years ago, the old Jan died, a new Jan was born. We celebrate this milestone with all of our hearts. Come, celebrate with us!

Fede

New Year's Eve

2008-12-31T22:59:00.003-05:00

The old is gone, the new is starting. Old what? new what?

My wife still carries in her brain that old scar from an aneurysm, she also carries in her heart the renewed hope that things are getting better for her. Her brain is doing the incredible job of re-writing by itself, without any previous training or rehearsal, all the programs that control the functions she lost. In a very real way, the design of her brain is new.

In another way, her character is the same. Her foibles are aggravated by her illness. Her short term memory is too short, the master filter for emotions is still not fully functional, her sight is diminishing. The old groves carved in her brain by years of repeating the same behaviors, beliefs and choices are too deep to be changed even by an aneurysm.

My faith in Christ tells me that we are transformed from the inside out when we believe in his words. The old nature based on self-gratification and disobedience is changed, a new person starts growing in our core because we have been put right with God. This brings clarity to my purpose and a clear map for how to live my life. This movement from darkness into light is so radical that it is equated to having a second birth. If I live by these convictions, I am a new person. The old is left behind, the new takes over progressively until all of me is new.

Jan also believes this. However, the effects of the aneurysm pushed her renewal process back. Some days I see her behaviour similar to that of a little 3 year-old girl. Old ways of reacting, of relating, of believing crop up and the lovely, mature and intelligent woman I married disappear.

Aphasia, lack of control over emotions, old beliefs, make me think about this movement from the old to the new. I pray that my wife sheds the old and dresses herself with the new. This is my hope in a new year.

FC

The Polar Express

2008-12-30T00:06:00.003-05:00

A dear friend invited us to get together to have a DVD night and watch together the Polar Express. At the door he greeted us with a conductor's hat calling out: aaall aboard!.

Five of us watched the movie with delight. Each had received a non-transferable ticket, just like in the movie.

At the end, our friend came and “punched-out” our tickets. Inside of each ticket there was a personal secret word, -a message to each of us- We proceeded to share our secret word and what how it spoke to our realities. I must say that it was one of the most fascinating and intimate experiences I have had in a long time.

Each took a turn to talk about our fears, doubts and struggles and of course about our secret word: courage, endurance, trust, believe, and peace. We reminded each other of profound truths and listened care-fully where we stood in relation to the light of life Christmas bring to us. One by one, confirmed that friendship is the best gift we can ever get.

We talked about the journey, the many voices along the trip that are given to us to help and guide until we reach our destination. We acknowledged that our lives are not only about peace without strife, light without shadows, happiness without pain and tears, trust without doubt, courage without fear. Each of these are the two sides of our experiences and provide the necessary background for us to understand the meaning of living in the light.

The night was short. However, I felt as if I had been in a long journey with my precious friends. I sensed a special closeness and camaraderie with my friends, the kind soldiers feel after months of fighting shoulder to shoulder, or the athletes have after sharing hundreds of hours of training together.

We went home, but somehow I didn’t leave behind any of my friends. I brought them with me in my heart. I know we journey together to the same destination, having to think each one on the meaning we must discover in the secret words written in out tickets.

FC

No More Gloom!

2008-12-24T21:46:00.003-05:00

No more gloom! ...a light has dawned...to us a child is born!!! (Isa.9:1-7), the preacher read with passion, in direct competition with the myriad voices and songs flooding us this season.

Imagine -he said- if this passage from Isaiah filled the headlines and the prime-time news, the same that have convinced us that we are in for a spin, a slow down, a depression of the economy that should also depress us psychologically.

The original audience of Isaiah had reason to feel gloomy. Theirs was a failed nation about to be sent into exile. Yet, in the middle of all this hopelessness and despair, the Lord announces a rescue plan -not like the one being cooked for Wall Street or the auto industry. (We were at a Christmas concert put together by a small neighbourhood church in the west-most suburbs of the city.)

This rescue plan is for total change. This is a transformation from the inside out. This is a plan to rescue us from our own darkness that has spread to the whole creation, a rescue plan that would cost a precious life. This unique life began as a small light, the size of a baby born to a young woman in a stable... This life

I had enough losses over the past 34 months to feel gloomy for a life time. However, I choose to feel thankful, to let that light come into my darkness and change it from the inside out.

My struggle is fought on a day to day basis, where the remnants of my shadow insinuate me to fall into despair, doubt, hopelessness, feeling victimized and powerless, fill my heart with fear and desire to escape. Here is where I take a stand for light and the beautiful life it reveals.

Would you join me in this celebration of light of life?

FC

The gooder days and the badder days

2008-12-13T01:17:00.004-05:00

As the closest person to Jan, the greatest challenge I have is to keep a healthy balance between my emotions and my commitments. We have told each other repeatedly that we will stick together through the thick and thin of this lengthy process of healing. I have told her many times that I love her no matter what. I think that we like each other most of the time. Nevertheless, there are times when I ask myself what did I get into?; how am I going to make it one, two, three or more years?; how can I be there for her in a way that she recognizes it as caring?; where will I find the fortitude of spirit that this requires?.

This week seems to be one of the badder times. I allowed the difficulties in our communications, get in the way of responding to her needs in a positive and validating way.

I recognize something that people call destiny: from the depths of God's love, I was destined to partake of this bitter cup with Jan. I have grown as a man, she has grown as a woman. Both have grown as children of God.

This week seems to be appropriate to be in expectation of something to happen that will lessen the pain... a star shining over a small town, a child being born to save and heal, a light to stop forever death and darkness.

In the middle of my darkness, I search for light in the face of a child.

FC

The effects of a seizure

2008-12-07T16:59:00.006-05:00

Jan had another seizure yesterday (Saturday). This is the first one that happened during the night. I didn't know about it until the morning, when she called me with a weakened voice that revealed the seizure. Usually, she loses consciousness for about 30 minutes and for the next 6 to 12 hours she feels very weak, her speech is greatly affected and her mobility reduced.

The image I get is like the one I saw in the hospital, a month after the stroke. My feelings go aback to the feelings I had in those early days. I thought that with time I would become used to seeing her struggle with less functions and energy as she continues to heal; but every time she has a seizure, I silently groan swamped by an endless feeling of powerlessness.

I pray for help, for strength, but I feel my prayers don’t go past the roof. Where does this end? I ask, if there was a lesson on brokenness and being humble, I already am on the floor! How much lower do I have to go?

Then, I read in the kitchen wall a sign: “I can do all things in Christ”.

I pick the pieces of my broken self and go back to help Jan tie her shoes, because she wants to go to the garage...

FC

Living with a brain injured person

2008-11-05T23:06:00.010-05:00

I had never heard of the brain injured people, or the more technical term "acquired brain injured" (ABI). I had never been aware of someone with a damaged brain. True, sometimes my siblings' quirks made them look looked like they were brain damaged... but, understanding the challenge of having a brain injury and observing how it affects daily life was totally foreign to me, until Jan survived an aneurysm that killed a part of her brain.

What does this mean for Jan?
She carries in her head the scars of various operations. She has a damaged brain. She has seizures and struggles with the side effects from medications. She experiences pain, a dull kind of pain, on all of her right side from head to toe. She moves her right side awkwardly, Jan has “right neglect”. She speaks with an accent and can't find the words to express her ideas, Jan has aphasia. Her energy level is half of what it used to be. She has trouble with her short term memory. Her emotions often get the best of her.

She would love to heal faster and go back to work. But she can’t. Right now she volunteers two days a week, practices Tai Chi, and takes physiotherapy on top of doing the food shopping and keeping her correspondence up to date with friends from all over the world.

What does it mean for me?
Living with Jan is a blessing and is a challenge like no others I had faced before. All I knew about communication --things like timing, tone, choice of words, non-verbal cues, and so on, and so forth--, were suddenly flipped upside down; I am constantly relearning ways to reach her, to listen actively and have meaningful verbal intercourse with her. All I knew about how the body works and feels movement, temperature, and touch had to be relearned; I am learning how to express love to my wife; how to walk, talk, read, discuss, work at her pace; how to touch her in a way I don’t hurt her; how to be patient, beyond what I perceived as my limits.

I’ve also struggled with the broken dream of a "normal" marriage and work in rebuilding a new relationship that includes the impacts of her brain injury. I am challenged to learn fast, new ways of communicating with her in the way she needs and in a way that meets my own needs. As a couple, our physical “balance” was broken.

Jan’s brain was injured by a broken aneurysm. I experienced an “emotional aneurysm”. For a while, I struggled with feelings of “unfairness” and disappointment with God. I felt abandoned, punished, wounded. Unadvertently, I slid into a dark state of depression that, for months, left me paralyzed in most areas of my life. With time, good friends, many prayers and professional help, I healed from the emotional aftermath. After all this turmoil, paradoxically, I felt that my faith had been strengthened rather than weakend. I learned that this event was as much part of life as any other part.

The test, if there was any, consisted in recognizing that love, peace and happiness are the flip side of indiference, strife and suffering. We cannot understand one without the other. They all belong to the realm of the temporary. I experienced times of deep pain and uncertainty, times when I could not find a good reason to continue. But I also experienced times of incredible peace that went beyond anything I could understand; times of certainty when my core was re-affirmed in the knowledge that I was not alone, that no matter what came, I could always gain perspective by knowing that through the life of Jesus, my God was not a stranger to suffering, abandonment and pain.

Living in acceptance of pain and limited functions gives Jan and I a new perspective for life. It is a challenge: we don't get to do what everyone else can do; we don't have all the physical freedom to go anywhere we want; but, we have learned to look beyond the obvious, to the essentials of our relationship and our lives.

Once I learned that ABI people have experienced strokes, been involved in serious accidents, having a trauma during birth or having an injury to their brain for any other reason, I found that the ABI community is larger than I ever imagined. An estimated 180,000 people in Ontario are considered ABI. This is amazing! Where do they hide? How come I had not noticed them before? Well, they are not hiding. Now I can see so many of them walking with one side of their body limp, or with walkers, some having difficulty with words. I was oblivious to them, too focused on myself and my work that I did not notice them. Sadly, the majority of us are the same.

I don't know how much of her functions Jan will recover. No one knows for certain. But if the newly discovered "plasticity" of the brain is correct, then Jan has forced her brain to relearn an incredible amount of information and functions. She did not stay still. she has tried as many thereapies as we have been able to find. the price has been high, but so has been the pay off. She is talking, remembering, using her right side and walking beyond the initial prognosis. Clearly, this is a positive indication that there is no limit, that the end of the recovery will only be death, and in Jan's world, death is not an end but a beginning.

So, next time you talk to Jan, tell her that you are supporting her shoulder to shoulder in her effort to full recovery.

F. Carrillo

Seizure

2008-10-09T23:10:00.006-04:00

Jan had a seizure three days ago, on Monday. Jan's seizure happened in a public place. She had time to lay down and let her brain short-circuit for 30 seconds. For those who have not seen a seizure, the sight can be fringhtening. The standard procedure of the office where she had the seizure was to call 911 and send her to to emergency. The local hospital where she went could not access Jan's records from other local hospitals and was trying to find what was Jan's problem and what they could do.

Life is not without irony. At the time the ambulance arrived to the emergency room, I was walking into a business meeting in a building rigth across from the hospital. I didn't know until three hours later where she was. By then I was already home. The person she was visiting had left messages informing me of the event. So, I had to go back to downtown to see Jan.

We had invited friends from Brazil to come and have dinner with us. They arrived when I was leaving to the hospital, so they came with me. This was the first time they were inside of a Canadian hospital.

Jan was released after the physician heard that this was an expected event and that Jan is been seen by a neurologist. When we came home, we ordered pizza and Jan had a good time looking at pictures from Bello Horizonte in Brazil. This took her back 25 years, to the time when she lived there for a year.

It's three days after, and Jan is still struggling with headaches and light headedness. She fears that another seizure may happen. She sleeps a lot and her feeling of loneliness is more acute because she is more restricted in her movement for now; she has canceled a number of appointments and activities she normally does.

How much longer Lord? She is at the end of her rope and I have long passed that proverbial end.

FC

Adding the losses

2008-09-28T21:37:00.010-04:00

Life is a series of losses.

Since her aneurysm, Jan has experienced a series of hard losses. Consider what she lost: her speech, full movement and sensation on her right side, previous to the aneurysm she lost 80% of vision on her right eye, she lost her job, her driver's license, her independence, her ability to remember short term happenings, her ability to teach, her ability to read fast, her ability to write with clarity, but most poignantly, she lost most of her friends.

To the struggle to recover more speech and movement, she finds herself struggling with loneliness and isolation.

Some days, she looks and feels as someone who has been condemned to solitary confinement for months or years. She craves company, but few people are available to giver her time. She can't remember to call and make appointments, and everyone seems too busy to call her.

With a few exceptions, she suffers the loss of her many friends.

On the bright side, she has been experimenting with life without medications. It's been almost three months since she stopped taking medications for seizure control. Right now she is flying solo.

Given that in the past she had seizures every three months, and that the first part of October is about the time when the cycle is complete, she is anxiously waiting to see if there will be a seizure or if she has somehow been able to overcome the seizures. She believes this is a stage, that the seizures and the aphasia will somehow disappear.

So, to the loss of friends, she has freedom from drugs.

Life seems to be also full of gains.

FC

The milestones

2008-09-19T16:06:00.005-04:00

May 2005 Jan and I met at Linda's birthday party hosted by Joy.

September 2005. We had the most incredible wedding in the company of the most incredible people: friends and relatives.

February 11, 2006. An aneurysm, that probably Jan had since birth, ruptured in the left side of her brain. In two operations within two days, she lost the area that controls speech, math, problem solving skills and the movement on the right side of her body, as well as some short term memory.

March-May, 2006. She has to start from square one: wearing diapers, eating baby food, unable to walk or talk. In four months she is walking without any mechanical help and regains about half of her speech ability. She is diagnosed as having mild to medium aphasia and right neglect.

May 2006, the plastic surgeon puts back the left flap bones in Jan's skull without realizing that they are dead after more than 3 months in the freezer. Jan has the first seizure hours after the surgery and starts antiseizure medication, which reduces her speech, comprehension and energy levels. Jan completes rehab therapies, the hospital decides that she is too well to stay any longer as an in-patient.

June 2006, Jan comes back home. She continues to work hard on her speech, can walk wobbling, can eat by herseld solid food, and weights 112 pounds. Continues as an out-patient.

November 2006, Jan sports a big dent on the left of her head. The flap bones have been reabsorved by her body. She starts riding her bike a bit unsteadily and refuses to ruin her hairdo with a helmet.

March 2007, Jan continues to improve in her language skills and mobility. Aphasia is still noticeable, she can understand more. She is swimming and more mobile. Struggles with the side effects of anti-seizure medication, she is on number 4 or 5. By this time we noticed that the seizures come once every three or four months.

June 2007, Jan ends in the hospital for a week because of side effects of the medications. She has been receiving NUCCA, a special physiotherapy from a chiropractor. She also continues with a special treatment of glyconutrients.

September 2007. Plastic surgery to correct Jan's missing flaps. The surgeon puts a hard mesh made out of polymers to replace the lost bones. Jan's head is back to a nice round shape, however, the surgery leaves a dent where the muscle on her left temple atrophied.

October 2007 to February 2008, She continues to improve in her aphasia, her conversatins are clearer and her energy level is higher. She starts treatment with an accupuncturist from China.

March 2008 to date, she is seen by a female neurologyst who orders an MRI but the radiology dept at the hospital refuses to do it because Jan has a clip in her brain. We ask the neurosurgeon to send a description of the clip and a statement that it is safe for Jan to have an MRI. The radiology department in the other hospital still declines the service requested by their own neurologist! Months later Jan has the MRI in the first hospital...

Latetly she feels tired and unsteady. It's almost three months since she stopped altogether the medications after a failed attempt with number 12. Her speech continues to advance. She reports a quantum improvement since she stopped her medications.
After and has a

Worth the wait

2008-09-13T21:21:00.010-04:00

This is a blog about me. It is about what I thought Jan was going through during her ordeal.

In reality, I don't have the slightest idea of what it is to be unable to move half of my body, or be on constant pain, or not to have 20% of my brain, or be unable to express my ideas in simple words , or be the object of curiosity, interest, love and neglect, all at the same time.

No. I could not even start imagining what it is to go through what Jan has gone through. She often reminds me of this. So, I have no claim to be able to report about what goes on inside of Jan, or how she looks at the world from inside her broken body.

This blog was in many occasions the only way I had to express my feelings, so I would not burst in desperation and hopelessness. But this isn't an apology. We both are the survivors of an incredible journey of blood, pain, dark days, hope hanging by a thread, that I wish no one else would have to experience. It is also about our amazing capacity for love that can only be uncovered under critical circumstances. I wish we could just love and be loved without the pain... but we all know that there is no love without it share of pain...

I am a survivor. My injury was emotional. The woman I chose to love was broadsided by her own blood. She was comatose, between life and death; but she didn't let go. She survived. Then, she had to start from square one.

I had been married to the woman for four months. I had courted her for four months. I didn't know her well, and yet, the moment she went into the ambulance, I knew we had to go though this time together and stay together.

So, I stand here, almost three years after our wedding, asking myself what is normal? How does it feel to be married to a normal person? Am I normal? What is normality anyway?Jan is as normal (with a few words less) as anyone else. I am beaten up, a post-traumatic survivor, as normal as anyone else. We both laugh, cry, fight with each other and then embrace and comfort each other, like any other couple.

She would've liked the path to have been shorter. She would like to be already there. But she has to wait. Brain time is not the same as our time. Hers is working all the time, fixing, patching, moving, re-programming, learning at its own pace.

I would've liked the path to have been really short, only a few hours or days, perhaps. I would like to enjoy life at its fullest with my wife. But I have to wait for her. That is the path.

I empathize with Jan. I wish I could share some of her physical pain, lend her some words to ease her frustration, give her my leg so she culd run wherever she wants. But on a clear day, I know that I can only live and speak from what I am. And what I am now is a man who knows that Jan is worth the wait.

FC

A different Jan? The same Jan?

2008-08-26T09:14:00.010-04:00

After the rupture of her aneurysm, Jan became a different person. After her aneurysm ruptured Jan is still the same person. Who really is Jan?

Jan is both.

Deep down, she still is the same girl with an iron determination to do her best and some more in every task she takes on. She is the artistic and creative spirit many came to know. She is the musician that can hear when someone among dozens has gone out of tune or out of step with a song. She is the same passionate and sensitive woman, also the one who will not put up with anybody's nonsense with a big smile. Deep down, Jan is the same; the same Jan still lives in her body.

Closer to the surface, where we get to interact with Jan's feelings, ideas and her physical presence, Jan is not the same.

Aphasia is more than having some broken links that make more difficult to go between ideas and words. She says that when we talk, my brain connects almost effortlessly my ideas with the choice of the right words and then tells the muscles in my mouth and throat how to make the sounds to produce the words. Speaking has always been so easy for me that I never stopped to consider how much it takes to do it.

For her, the task is a lot harder; she formulates her ideas just like me, but then, the speech program in her brain goes frantically running through all the files in her head, looking for the right word, sometimes she can't find the word; sometimes when she can, her brain has trouble sending the orders to the muscles in her mouth how to form the sounds to produce the words.
So she will often stutter sounds without meaning, even though the word is clear in her mind, or in her effort to say what she has in mind, she will use words that are not the ones she wanted to use... so, instead of saying, "wait, give me a minute", she may say "shut up, go away".

The message is the same, but the listener will likely react in a different way. This is what I often do.

Then, aphasia is also broken intake of information. It takes more time for her to understand completely what is being said to her. Oftentimes she asks for the message to be repeated. This is an essential need for her to really get what people say.

But most people can't understand that when talking to her. Most people just go on at the same speed they use with others, and when asked to repeat, they feel frustrated. She, then, feels sad and then frustrated because of her limitations.

Technically, that is aphasia. She has aphasia and I live with aphasia. Communication, to say the least, has an added layer of complexity, tension and pain.

However, as CS Lewis hinted "the pain now, is part of the happiness then" So, we both continue holding on to the hope that one day the Lord will restore her.

The art of balance

2008-08-20T15:08:00.008-04:00

Balance is one of those sustaining principles in nature that shapes also our interactions with other people and even spills over into the ways we explain the world. A philosophy of balance would say: "not too much of this or not too much of that, and life will be OK."

Most people would agree with that, but Jan. In her life, balance is secondary; as long as she speaks truthfully and she is told the truth, it doesn't matter whether the world is upside down, including her own.

The most obvious proof that Jan struggles with balance is just to see her walking when she is tired. She woobles like a boat in troubled waters. Hesitant, she takes a few steps, stops, regains balance and then continues. Someone defined walking as a way of moving from one point to the another by throwing the body constantly out of balance, then moving one foot to regain the balance momentarily, just to go out of balance again...

This is Jan at her best. By keeping herself out of balance she keeps moving forward. It is a paradox, like her unshakable love for God.

A balanced life can be peaceful and predictable, safe. But, it can be choking and mediocre as well. Instead, she pushes the boundaries beyond that which is balanced. She likes being in the eye of the hurracaine.

Life with Jan is an experience similar to walking on a tightrope or walking on water. There is no offer for balance, rather, the offer is to move forward, to be daring, to accept the risk of being out of balance and out of the confort zone.

This is why I married her.

To keep the balance between a balanced and safe life and one that moves into unknown territories of life is an art. Achieving balance is important in life, as long as it does not block growth. There is no science to this. It is all an art.

Jan Un-ltd.

2008-08-12T10:28:00.008-04:00

If Jan was a corporation she would choose a name ending with Unlimited.

Limitation is a word that does not exist in her vocabulary. There is pain, right neglect, memory gaps, aphasia, fatigue, and the long standing battle with medications; but in her world these are not limitations. She says that the real limitations are not in our bodies, but in the way we think.

Jan Un-ltd. went for a trip on her own. She went to spend some time over the weekend with a high school friend. KC is one of a kind. She was really created to match Jan. The two are uncapable of telling a lie. so, imagine their conversations... two women talking -probably at the same time-, friends for a long time, dishing no bull, just the real enchilada.

When I spoke with KC last Saturday, she was excited, prepared and blunt. That's KC. I remember that on my wedding day KC, was sitting next to the minister lady. Everyone was laughter and joy. At one point, KC came to the table were Jan and I were sitting and she produced a pocket knife, which she said, she uses to castrate the goats in her farm -ouch!-, and then added, that if I ever was mean to her friend Jan, she would come with her pocket knife and find me... you can imagine the dismayed look on the minister's face and of the guests that were listening. But that's just KC.

There are very few people with such history and influence on Jan. Refreshing to see the love between friends grow and deepen over so many years. This is why Jan Un-ltd. took the trip by herself, and also to have a break away from her husband...

I have learned so much about the endless possibilities of the human spirit just by watching Jan. The unsinkable and unlimited. There is a lot to be learned from those we consider broken, because out of their brokeness they have accessed territories of the soul, unknown to many of us.

FC

Walking on water -5

2008-08-12T09:59:00.005-04:00

Walking on water -5

There she is,
fragile and unfazed;
with her unwavering heart
overflowing as she steps
out of the boat
into the raging sea,
into the waves of fear,
into the promise made,
that one day
she would be restored .

By faith alone,
in the middle of the night,
she dares to walk on water
into the Healer’s arms.

FC

A word for Jan

2008-08-04T14:25:00.002-04:00

Jan is struggling with pain, depression and isolation.

Would you take a moment and send her a care note so she knows you, out there, still think of her?

Her own email address is:

janitawalton@google.com

You could make her day.

The center of Jan's brain

2008-08-04T10:57:00.003-04:00

I imagine that if there was a cockpit, or a driver's sit in my body from where I control everything my body does; where I receive all the input from my 20 or more senses; or where I decode all my experience, it would be somewhere in the center of my brain. I'm not too far, because brain anatomists say that where all the right side functions and the left side functions coordinate and come into one is in a connector in the middle of the brain: the driver sit!

I don't know where or who is at the center of Jan's brain. It has moved because of the partial lobotomy she had during her aneurysm. The music is all there, safe in the right side. The numbers and words were all disorganized and are slowly being re-stored or filed in an orderly way, so Jan can access them. The movement of the right side is compromised, some days more than others, with what is called "right neglect". It is strange to think that her brain just decided to ignore her right side, to neglect to pay attention to it. So, when Jan moves her right hand or foot, she has to concentrate on that action. I don't remember when was the last time I paid attention to my right side, it probably was when I hit a bench with my right knee that sent me hopping on my left foot in pain. Jan does this often. She forgets that she has a right side and is reminded when she has hit something or she has put her right fingers in the hot soup. Ouch!!

Last night, at about 3am she woke up with shooting pains in her right leg. I asked her, are you OK? what's the matter? to which she responded: AAAGHHH! OOOOHHH! STOP, STOP, PLEASE STOP! This went on for about 3 minutes, while she was holding her right leg up in the air. Then, she pointed to something in her night table. I could barely see with the light from outside what she was pointing at. She became very frustrated and still with little command in her words she said "I, I... headache". I grabbed the bottle of painkillers and gave her one with water. She fell asleep soon after.

Over the last few weeks, my biggest struggle is with her belief that I am trying to make her heal faster -which would be nice if I had that power--, and my belief that I am being as compassionate and caring with her as I can; and when I reach my limits, I continue beyond just by pure grace of God.

Really, there are times when I don't know with whom I am talking. The woman who sleeps in my bed feels like a stranger, as the one that feels attacked or criticized for no reason or cries because of depression forced on her by medications. Who is in the driver sit of Jan's brain? Does she recognize herself? or has she blended her identity with her aphasia and right neglect? I try to talk to the Jan I knew, but often it backfires.

In my brain, I struggle with two voices, one that says:
-you didn't bargain for this. You should've been running a long time ago. It's time to counts your losses and pack; and so forth.
This voice sounds like a victim, like someone really wounded, like a child who has lost his candy.

The other voice sounds calmer, it is the one that says:
"you are your word, if you make a pledge, you are obliged to fulfill it. The greatest love is to give your live for someone. Pain is as much a part of life as is love and happiness, and, they are not mutually exclusive. Jan needs you and is waiting for you, go now..."

So, I wonder, what's going on in the center of Jan's brain. As for mine, I'm beginning to discover how my brain's center has changed...

FC

lines on the sand

2008-07-03T00:40:00.006-04:00

I like drawing lines on the sand. I like daring myself to cross them. I like crossing those lines, then erasing them and drawing more lines further down. As a matter of fact, I have been drawing lines on the sand for quite a while.

In the last couple of years, most of these lines were related to my reactions and behaviours about Jan's progress. It was a simple game. At times it meant taking the cautious medical prognosis to draw a line, and then, I would ask Jan if she felt that line was impassable, if she believed the doctor who had said it was as far as she could go... and then, I was thrilled to see her crossing the line.

It is in my genes to do this, as much as it is in hers. Lines of containment, somehow, only represent an invitation to go and see what's beyond. There is no ill intention, just curiosity. A curious person, that's what I am, and sometimes this makes me an iconoclast. I don't believe just what the "experts" say just because they say they are the experts, and Jan questions this as well. This crossing of the lines over and over again pointed clearly how far she is willing to go and how much I was willing to keep challenging her.

The lines drawn by physicians indicated more the extent of what they know and how afraid they are of the legal implications of their statements about how Jan's brain works and heals, rather than what really is happening. Most of the time, I was disappointed by how close those lines were drawn. Jan would just keep going and recovering functions beyond what everyone expected.

We have crossed many lines. We have dared to believe and somehow we have seen miracles. I think that this is what a miracle is: crossing the lines, going beyond the boundaries, breaking the self-imposed rules about how life and God work. The opposite is accepting to stay inside the "kiddie's play-pen" and believe my own disbeliefs and pretend that that’s all there is to life.

But crossing the lines is by no means an easy thing to do. For me it has been quite challenging and painful. It has meant to let go of my own myths and ideologies and to navigate in the uncharted oceans of faith, believing that when we do all we can, no matter how little or small our effort produces, God will do the rest if he wishes. And the one thing I am sure about God is that he wants good things for us, even if at times, they don’t look good to us.

So, I keep drawing lines in the sand and dare us to keep crossing them.

the meaning of a pledge

2008-03-16T00:46:00.002-04:00

I was carrying an old jaded heart, when I found love, or rather, love ran into me one late spring evening. I thought then that I knew all there was to know about life and love. I could have died the next morning saying: I have lived. I have touched the bright and the dark of life, I have laughed and I have cried, I have been on the apex and I have landed in the ditch. I have embraced, been embraced, and also, walked the lonely streets; I have filled my hands with the sunshine and the shadows of life. I have stared death in the face and had walked on towards life. My cup of experience was overflowing. So I thought...

Suddenly, just then, as it always does, love came to my life, knocking at the doors of my heart and entering like the rain, that asks no one for permission.

I thought then, I knew all the big words of love relations. I knew the 7 secrets of commitment, the 10 ways to keep the love I want, the 5 paths to happiness in marriage, and so on. After all, I had spent a lifetime close to matters of the heart. I was convinced I had mastered the very essence of the stuff that binds people together. I was used to roll out of my mouth with great ease these words: trust and commitment, love and surrender, patience and strength. I really saw myself as an expert on walking the tight rope of being open and guarded at the same time, of being vulnerable and protecting my old self from harm. I fully believed I had mastered the art of living the paradox of love.

On a spring day, unsuspecting and unguarded, walking in the park, all the reasons and excuses ran like water through my fingers and I, literally, fell in love. Those who saw me thought it was temporary madness, that with time I would get well. But the heart knows no reasons not to feel the fire. Like a warrior galloping into battle, I opened again my heart.

Her name is Jan, and she stood tall in the park; the breeze gently swaying her hair, while her words filled every space avaliable in my world. She spoke with such eloquence, with determination, with the mastery of someone who has befriended words for a long time, and she said she loved God enough to go to other side of the world to show it.

I imagined having a conversation with God.

I said to God: “I can pledge her my love”

God said: Really? What do you know about love? What do you know about giving your life for another?

I said: “I’ve been there! I know that!”

God said no more. As if with his silence he was asking me to show him what I meant.

We were bubbling with happiness at our weeding. Life seemed to make sense and be wholesome. Our future looked so bright and full...

Four months after our wedding, Jan had an aneurysm that pushed her to the edge of the precipice. It was then that I began to learn the meaning of pledging love.

FC

Sister, where are thou?

2008-03-16T00:20:00.003-04:00

Where are Jan's friends?

Time has crept up slowly to Jan's recovery, and with time, the innevitable dust has accumulated on her day book. She used to have full days: walking up early for her personal meditations, going to work, calling friends to firm up appoitments, going to bible studies, meeting more friends for coffee, going home and sending cards and letters to keep the ambers of distant friendhips alive, and so on and so forth.

Before her illness she had many friends of those that show up when one needs one. But her daybook these days is empty. Her phone does not ring anymore. Her friends are too busy with their lives, some have dropped out completely from her life.

She can't remember from day to day that she has to call her friends to oil the relationships. Her short term memory is not working as strong as she would like. So, if she does not take the initiative because she can't remember, she is slowly facing the reality that many of her friends will just stop calling or writing or visiting, or even remembering her name. That is the nature of relationships these days.

I wonder where are her friends. Jan's friends, where are thou?

There is no perfect drug just perfect life sentences

2008-02-26T16:19:00.003-05:00

The seizure Jan had on Sunday shaked her determination to be off drugs. Two days later, she is getting back to her old self and convictions.

What does Jan do when she feels strongly about something?

Aunt Mary once told me a story when Jan was 16. The family was portaging in Algonquin Park, all with heavy loads on their backs. They were getting to the point when fatigue is greater than the desire to get to the destination, but every one kept walking.

Aunt Mary turned and saw Jan coming down the path, carrying her heavy back pack. She was so tired that she was crying.

Aunt Mary offered her help, to which Jan replied: "I will get there by myself, even if I have to cry all the way"....

That's what she does.

There are many people out there believing that there is a perfect drug that will control their ailments for ever. Jan thinks otherwise, particularly after trying 11 different drugs to control seizures only to find that each had so many negative side effects that the option was a matter of degree but the net result was to go through life dopped out. Many people take the diagnosis of the limited medical knowledge of their physicians with the faith of a convert, and accept the life senteces they issue to take drugs for the rest of their lives. Physicians do not assume responsibility for the broken promises of the drugs. They pass the blame to the manufacturers. In the mean time people go through life chained to questionable prescriptions.

Jan questions everything, including her husband and even her religion.

So, in spite of a new seizure, I suspect she will take responsibility for the risk of staying out of medications. Instead she will be determined enough to go to bed early, to keep strong emotions under control, to keep sounds moderate, to keep lights dimmed and to continue the way to recovery, even if she has to cry all the way...

FC

Needles and tonifiers

2008-02-20T23:37:00.004-05:00

Jan has been going to a Dr. Acupuncturist from China. She exhudes all this knowledge about how the body functions from a completly different perspective than alopathic physician$$$. She provides quite a sharp contrast about what "care-giving" and a "care-full" person looks like. Jan enjoys the slow pace and relaxing environment when she sees her.

We have been quite dissapointed with an endless list of generalist and specialists that Jan has seen in the past few months. All of them seem to be more interested in their own agendas than providing Jan with reasonable explanations about her progress or challenges. One common element I have witnessed in them is the lack of patience with Jan's communication difficulties. Problably the only exception is Jan's family doctor, who happens to be a woman also.

During the acupunture sessions, Jan lays down listening to soothing music, sometimes she falls asleep. About a dozen needles are inserted in her stomach, some of them with a small electrical charged. Her toes or her firgers move involuntarily as the small electrical current passes through the nerves. After the session, Jan feels great. Sometimes she can see the improvement in her movement or coordination. Is it all in Jan's head? From the outside people can see steady improvement. So, we leave the debate between Western style of medicine based on drugs, and Oriental medicine based on a more holistic approach to the experts. One thing we know: Jan is benefitting from this type of therapy.

The unfortunate part is that this is not covered by OHIP, so it is out of pocket expenses. Regardless, jan continues with this and with the NUCCA therapy she receives from the chiropractor.

Cheers,

FC

Two Years After the Aneurysm

2008-02-11T09:57:00.000-05:00

Two years ago, in the evening of February 11, 2006, Jan had a brain haemorrhage on the left part in the area that controls speech, just above her ear. She had an open brain surgery within six hours to clip her aneurysm and to clean the blood that had spilled to other areas. Blood keeps the brain alive when it circulates through the blood vessels. The same blood kills brain cells when it comes into contact with them. Life and death in the same substance. This is the paradox of life Jan and I know too well.

So, what has happened in the past two years?

This whole chapter began when Jan was getting ready to go to a Valentine’s party with me. We were happy, laughing, playful, romantic, when suddenly a little blood vessel with weakened walls burst. The possibility was there since she was born; waiting for that last beat of her heart that would push blood the vessels and rip the walls. That moment came on the evening of February 11, 2006.

The surgeons said this situation was deadly and they would do their best, but there were no guarantees. They also said that if she survived, her speech, movement on the right side and other functions were compromised. Four months later, Jan left the hospital walking by herself, with mild aphasia (speech limitations) and some movement on her right side.

About a month after her operation, a pastor came to the hospital with a group of friends to express Jan their love. He said, God had told him that “everything that belongs to Jan would be restored”. This became Jan’s standard since. With an unwavering faith she began the slow process of regaining more speech, more movement in her right side and more strength, as well as rebuilding her short term memory.

She was an out-patient in the rehab hospital for about six months. She received speech, occupational and physical therapies. The assessments from all the therapists were very encouraging. In the second year, Jan began alternative therapies: a chiropractor from a church she attended in the past applied the NUCCA procedure to help Jan’s body heal itself. This, coupled with a diet of food supplements (glyconutrients) impacted positively her recovery. She made remarkable progress, of course, not as fast as she would like, but she felt glad with the treatment.

On May 2006, she had plastic surgery to put back in the flap bones on the left side of her head. These bones were kept out to allow the brain to swell after the first operation. The operation was unsuccessful because the surgeon’s team failed to notice that the bones (kept for four months in a freezer) were already dead. Jan’s body rejected them and began to slowly re-absorb them. A second plastic surgery to implant an artificial plate instead of the bones was done in September 2007. The operation was 75% successful because the surgeon could not correct a dent on the left temple caused by the atrophy of the muscle that moves the jaw. Jan felt disappointed, but being cosmetic, she decided to concentrate on functions first.

Recently she began acupuncture therapy to stimulate the right side of her body to reconnect to the brain while the brain is slowly reprogramming movement on the right side.

Her speech has advanced considerably. When she is rested, she can carry a conversation at a high level for a good couple of hours. The aphasia is more noticeable when she is tired.

Her energy carries her for a good 6 to 8 hours before she is forced to take a rest –I say forced, because her drive to keep going is bigger than her energy-, and in total, she is awake about 12 hours in a day. This is a remarkable progress considering that she could barely stay awake 6 hours a day when she left the hospital.

Jan volunteers a couple of days a week at the church office. This, along with her medical appointments keeps her busy most of the week. She ventures into the subway and the bus system by herself. Sometimes, when her energy level drops, and it does suddenly, she just lays on the ground. A month ago I was late to pick her up by about 15 minutes; I found her resting on her side on the steps of the church. She is so free of the public opinion that she will rest anywhere without a second thought if she needs it.

We have gone through a lot in the past two years, and sometimes our relationship shows it. We have learned to see this process from God’s perspective: we don’t despair or feel short changed, but we do feel stressed and sometimes impatient. On occasion we find ourselves in conflict more because of how we feel than because of how we are.

Two years of reinventing Jan and reinventing our marriage has definitely taught us the substance of faith and how to find our own substance to continue in this path. We know we could not have done it alone. God has mobilized many people to protect, encourage, help, and challenge us. We realize that when we acknowledge our weakness is when we find ourselves being the strongest through others.

We don’t know where this path will take us. But we are not worried. So far we feel we are better from what has happened. We pray that we will make it as a couple in the long term and some day we will be able to share with other how we found the path in the middle of this jungle. One basic lesson is that nothing is for certain in our life, only God's love.

In the mean time, would you join us and celebrate Jan's Second Anniversary of her new life?

FC

A story of a seizure

2008-02-07T13:04:00.000-05:00

(The original text was lost in the digital hyperspace where all the blogs and bloggers live, so here is version 2.0).

I wanted to share with you a close up of what happens to Jan when she has a seizure. Not to sensationalize the event but to give you insight into what is one of the main sources of anxiety and fear for both of us.

Jan woke up later than usual. Being a Saturday morning, I thought she was taking her time to join me in the kitchen. She turned and tossed in bed but stayed under the blankets moaning softly and long as if it was painful to just wake up. I was making breakfast for her, two eggs the way she likes them: soft but not runny, orange juice, a piece of toast with butter and a cup of tea. I put the food on a tray and brought it to her, then, went to get mine. She was lying on her back, so I helped her to sit up and placed an extra pillow on her back. I sat next to her eating my breakfast with delight. She ate the food fast and in silence. I was looking at how skilfully she used the fork with her left hand. Her right arm was resting, lifeless, at her side. I asked her,
- "do you like your breakfast?"
She said:
- “mmhm, it’s not bad”.
She had an undecipherable expression on her face, as if she had not slept the whole night. Her words were fragmented and slurred.
- “how are you feeling? I asked her.
- “not well” she replied with an empty look on her face
- “did you take your medication last night?
- “always!, always! I am not a child! I am a grown woman, do you understand?

The words were coming out slurred and with frustration. I tried to change the conversation realizing that she felt patronized, but she would not let go. She had finished her food, so I stood up to take her tray away. She was saying:
- “I need a man who can"...

And then, the words just got stuck in her brain. The aphasia would not let her find the words she was looking for to complete her sentence. Her mouth was open, as if trying to say “aaa”, her head moving back and forth as if she was sneezing. But there was no sound. When this happens, I always feel as if time slows down to a crawl. Every second feels like an endless time. I fight with the temptation of filling in with the word I think she is going to say. Sometimes I give in and complete her sentence. Then, I realize that this only fuels more her frustration and I have to brace myself for a quick escalation or a fast retreat from my part.

With the trays on my hands, I was waiting for the words to complete her sentence. Instead, she just fell forward, flat on her face, her forehead touching her knees. She looked like a rag doll, without any supporting internal structure. Her arms crumpled to the side, still holding her fork with the left hand.
-“Oh, no! Please God, she needs your help!”
I said in anguish. I could feel the anxiety and fear gripping me by the throat, making breathing very difficult. I could hear my own heart beating out of control. I took a deep breath while I kept telling myself: stay calm!, stay calm! Focus!

I dropped the trays on the floor and quickly rolled her on her side. I took the folk from her hand and threw it aside. Her face had an expression of a combination of fear and pain. She had her jaw tightly clinched.
-“Jan, are you OK? Jan, can you hear me? Please answer! Stay with me... Jan..., sweetheart! Talk to me!

I reached to the night stand where I kept sublingual pills of a fast-absorption, anticonvulsant medication. These are very small pills that I had to place under Jan’s tongue. I kept talking to her:
-“I’ll get the medication. Stay with me! You’ll be alright. I’m so sorry this happens to you. Ahhh! God, where are you? Jan, hang in there. Open your mouth..."

When the seizure was happening, she tightened her jaw –as if she was doing a great effort lifting something very heavy- . I couldn’t pry her mouth open, so, I just placed the pill inside of her lower lip.

Only 30 seconds had passed. She made a deep guttural sound, she was breathing through her mouth in short shallow breathings, keeping her teeth clinched, while her eyes rolled back and forth. Her limbs became very rigid and she began a series of jerking movements – later I thought that, ironically, these movements are very similar to the jerking one makes when laughing or crying out of control- Her whole body convulsed as if she was receiving electrical shocks. Thick saliva formed foamed in her mouth.

The only instructions I had received from the doctors was to give her the anticonvulsant. A nurse once told me to keep her on her side to avoid her choking with her own saliva, and protect her head so she would not hit it against a hard surface.

I kept her head resting on my leg while all her body continued convulsing. I felt this burning sensation going up and down my chest, as if I was being scanned with a red hot iron ring just a few millimetres from my skin. I felt warm tears running down my cheeks and falling on Jan’s hair. My mind was racing with dozens of thoughts: Who should I call? Should we go to the hospital? No, we know it is a waste of time... they’ll just pump her full of drugs, keep her for 24 hours and then just send her home...the emergency room is such a dreadful place, why is this happening to Jan? It’s so unfair! How, I wish you were healthy again! I remembered our agreement, that if the seizure it lasted more than 10 minutes, then I would call emergency. I kept looking at ther, so helpless, her body out of her control. This view was painful, like a stab on my chest. However, the most painful part for me was the feeling of absolute impotence. I believe that it is my responsibility to protect my wife from physical harm. And here she was, convulsing, and there was a-b-s-o-l-u-t-e-l-y nothing I could do to protect her from this seizure. I don't know if being compassionate hurts always this much, but I knew I was hurting then.

I kept talking to Jan,
-You’ll be alright! If you can hear me and can tell your brain to stop, please do it! ...I’m right here. I love you... Just relax your body and stop shaking... Oh Jan, my sweet wife...please wake up!

I passed my right hand slowly over Jan’s hair and wanted to sing her a soft song, but I couldn’t remember one. I felt so tired, I wanted to sleep and not wake up in a year. I kept touching her hair and keeping her on her side. I had a perplexing feeling that her body and mine were somehow connected, and as she was having a seizure I was experiencing its echo.

The convulsions stopped slowly after about three minutes. Her body began relaxing. I rolled her on her back. She was unconscious. Her breathing became slower and deeper. I opened her eyelid; all I could see was a dilated pupil looking nowhere.

I took al the dishes back to the kitchen and cleaned her face with a damp cloth. I put her again under the blankets. She remained unconscious for another 30 minutes. I said a silent prayer. I was relieved that it was over.

Just as suddenly as it came, the seizure had stopped. The room felt like a large convention hall utterly empty. The after-storm silence was comforting. She would be alright this time.

--------
We know the triggers that will cause seizures. We know over a dozen medications to control seizures. We also know that Jan is hypersensitive to these drugs and that they do not protect her from seizures. Consequently, at the end of the year, we decided that Jan would stop taking any anti-epileptic medication.

The two reasons that helped us get to this decision were: first, the magnitude of the side effects Jan gets from these meds are not acceptable; her quality of life is dramatically diminished compared to the low protection from risk of seizures Jan gets. Over the last year and a half, Jan has tried about a dozen different drugs looking for one that would work controlling the risk of seizures, while at the same time having minimal or no side effects. Sadly, all of them caused her to have slurred speech, drowsiness, fatigue, headaches; some caused dizziness, irritability, depression and a general feeling of uneasiness.

On top of the side effects, Jan kept having seizures despite taking the drugs. So we began suspecting that most doctors were really behaving like pill-pushers, instead of considering Jan's struggle with the drugs. Some time around the end of the year, Jan's sister who has an adoptive baby son with another form of epilepsy attended a seminar about anti-epileptic drugs where the MD lecturer indicated that the drugs are ineffective with about 30% of the patients. No one had told us anything about this, and since the neurologist in charge of Jan's file was not available to see her until 6 months from now, we just decided to take charge of her well-being and stop the medication after consulting a doctor who saw Jan when she was in a rehab hospital. Jan just went cold turkey.

One of the main causes of seizures is sleep deprivation. Every time Jan has had a seizure has been after a day of lots of activity, strong emotions, and little sleep. Jan began having seizures the day the plastic surgeon put the flap bones back on her head (about four months after the aneurysm). Since then, she has had a seizure every three or four months. Her condition is minimal compared with epileptics who have one or more seizures a day. I some extreme cases, the seizure can go on for hours. Labelling her as an epileptic put her into a category that she does not really fit. This is one of the shortcomings of our medical system: once a physician labels a patient, it is hard to get rid of the label and convince other physicians that there is an individual behind the label. Once Jan was labelled as epileptic, she was dumped into the same box with other patients with more severe forms of the disease. One neurologist told her that the EEG showed that her seizures happened on her scar in her brain. That there was nothing to do about it other than controlling the risk with drugs for the rest of her life.

Of course, he didn't know what is Jan really made out of...

Fede

Year end summary

2007-12-28T23:32:00.000-05:00

As the clock ticks away this year, I am still looking for a phrase or a concept that would allow me to define its meaning, a way to talk about beyond the taxonomy of repeating the entries of my daybook listing appointments, travel, things to do, projects to finish, people to call… this is just what I’ve lived through, the actions that occupied my time and were plotted in my calendar. 2007 has something more to give, a meaning that I can’t see, probably because I am too close to it to be able to gain perspective. One thing I can say is that it was a continuation of the demolition of my old self that started the year before.

In 2007, sometimes I witnessed of the transformation of my beliefs, my dreams, the very definition of the man who answers to my own name. It is as if somehow what I was living vicariously through Jan, inexplicably became my own existence. Jan was the one with the aneurysm; she is the one who underwent surgery; she is the one struggling with aphasia, I was just the observer…or was I? In the past twelve months I have reviewed my definition of reality. I don’t’ see the process any longer as if I was observing from the other side the looking glass. Jan’s aneurysm was also mine, as much as her struggle with aphasia this year is also mine.

What does the Bible mean when it says that a man and a woman become one? Is it a comment on the sexuality of the relationship? or, does it refer to the children they beget? or is it a process whereby two individuals begin to dissolve their boundaries to the point where there is one shared psyche through which common dreams, visions, communication and life can be expressed and experienced as one? The believers of the “revolving door” theory of marriage insist that we remain individuals for life, enjoying the conveniences and good feeling marriage can bring as long as it lasts. Perhaps this is how I thought before, having myself participated in the dissolution of a marriage. Bt this time I find myself dealing with a different matrix, and different parameters I have to use to define reality. And this is where the change of my essence is taking place.

In 2005, when Jan and I decided to marry, I told myself to mean what I said and say only what I meant to do. So, I pledged her my love, my company, my words, my support regardless of her circumstances, not knowing that soon I would have a chance to test my resolution. 22 months after her stroke, I know I had to say that pledge, because it represented a matter of life or death. I could have done what I did before: retract my words, and run away to avoid the inconvenience and pain of going through her lengthy recovery. But I would not have been really living a wholesome life. So, this is what I am beginning to realize in 2007. In staying I realize that my self somehow has become one with hers. She suffers, I suffer too. She becomes frustrated with the communication difficulties of an injured brain, I do too. She feels like a portion of her self has been severed, and that she needs to reconstruct those portions of her identity that have been lost. I empathize and in a strange way, I find missing parts in my own self; I too had to rebuild a new definition of what it means to be a husband, a companion, a support for Jan and a person for myself.

A few more days and 2007 will be over. In retrospect, I choose to see blessings amidst the challenges. It has not been an easy path. Some days we both scream for a way out, for space between us, for more clarity in our communications. The sunshine of many days was obscured with our tears of frustration with a system that cannot see her as a person, of impatience for not being able to speed up the recovery, of impotence for not being able to reduce her pain. However, even in those days we have seen rainbows through the tears. We still love each other. We still are together. Jan continues to make improvements, ever so small, everyday. We still hold each other in the good days and wait together for the bad days to end. We are taking the risk of increasing her quality of life by stopping her anticonvulsant medication.

2007 is a year of change. I have changed my optics and definitions about life and suffering. She has changed her understanding of commitment and fear of intimacy. We have lived in two years a life share of pain, and we can say with hope that we know there will be one day when she will be fully back.

2007 was a year that demanded an incredible amount of courage and strength. Jan and I didn’t have it all the time. In those dark times when we found ourselves with no strength, resources or vision, it was all of our dear friends and families that carried us to safe port. We thank God for all of you and we thank you.

2008 is a blank page. We want to fill every days of it with a celebration of hope, compassion and truth.

FC

the unsinkable Janita Waltonski

2007-12-06T00:41:00.000-05:00

She has done it again!

Against all odds, diagnosis, prognosis, prescriptions, therapies and experiments, she has decided that the best definition of health is her own and the best path is what she decides is best for herself. No suprise here for those with a long acquaintance with Jan. She just found herself beyond the end of the rope when one the same answer from the medical establishment came back one too many times: we don't know what causes such strong reactions to the drug therapy. You need to continue trying new drugs until we find one that will work with you. Easier to say than to do. She was on the 11th tryout, with the same results: drowsiness, difficulty finding words, pain in right side, difficulty understanding, difficulty hearing, reduced vision... if she continued this path, soon she would be like Helen Keller...looking for a miracle worker.

So here she was tonight, bringht and alert, with an unusual energy level, with great clarity in her words, and minimal difficulty finding words, all due to the fact that she decided not to take her pill today. It is a difficult choice: increased risk of seizures or dramatically decreased quality of life.

We went to the last class of a course we have been taking for 10 weeks. Sometimes she attended but had to lie down in one of the couches because of extreme fatigue, also, she could not participate much because she could not find the words... so she would come home frustrated and sad for the losses... she would say that she would rather die if this is the type of life awaiting her under these medications. Tonight she was awake, alert, talkative and walking on water... so to speak.

We don't know where this road is going to take us, we both embrace risks. Tonight we prayed that her brain would be protected from seizures w/o the drugs. It is a journey with no map, but with a strong sense that God is walking right next to us all the way, and that the tender hands of those who love us will be holding ours.

FC

Update

2007-11-15T23:53:00.000-05:00

It's been a month since the last blog. Here is the update for those who still read this.

It's Nov. 25 now. Jan continues to make progress in some areas. People who see her once in a while can see the improvements with greater ease than myself or Jan.

She started the 11th medication a couple of weeks ago with the well know struggle with the side effects. We both pray that one day she will just be free from these terrible but useful drugs to control seizures.

Access to neurologists in Toronto is more difficult than getting an audience with the Prime Minister or the Pope. We saw a neurologist at the beginning of November. When we called her secretary to make another appointment, we were told the next available appointment is in June 2008! that's more than 6 months from now. This is what the Minister of Health calls a "good system"! So, in case Jan's struggles become more acute, the only option we have is to go to the emergency room, which costs to the system several times what a regular visit to a specialist costs. Arrrrhhhh! Who is running this province?

Some days are good, I see that Jan moves around and talks almost normally. Other days are more difficult, where I can hardly understand what she is saying. On the difficult days, our communication deteriorates quickly, and the likelihood of conflict is always present. I perceive a hypersensitivity in her to everything I say or do. Almost innevitably, at one moment or another I will be caught off guard and we end in crisis. I say something she takes as criticism or something in the tone of my voice or the expression of my face, anything can trigger an explosve reaction.

These crisis look like this: her voice increases in volume. She starts crying and her words become more scrambled. In less than a minute I hear only incoherent sounds, a single sylable repeated many times, just like when an old CD gets stuck on a scratch or dust. She then will fall to the floor wherever she is and continue her crying lowdly. I've learned to put aside my emotions and look at her safety and comfort. But no matter what I ask or tell her, there is no response. There is no use for explanations. That can only happen after she "comes back". Eventually, the sobbing will stop and she will stay there, on the floor sometimes for a half hour, with no energy left, semi-unconscious, like a rag doll.

I can't describe my feelings when I see her in this condition (sadness, loss, guilt, anger, impotence, or all of tehm at the same time). I feel responsible for all these crisis even though I know I am not. But that is the deal, and this is life in real time. It has a tremendous effect on my psyque. I realize I am struggling with time and a sense of direction more and more these days.

On the bright side.... what side is that?

FC

Core commitments

2007-11-15T11:53:00.001-05:00

Life is an emotional ride.

The ride has been full of emotions. Everyone who knows Jan, knows that one of her essential methods of expressing life is through emotion. Ironically, in this healing stage, emotion seems multiplied. The medication (Jan is now testing her 10th. medication), together with the rebuilding of the neuropaths is creating this effect of magnifying a set of already strong emotions. So, on a clear day, you can see Jan extremely happy, or extremely frustrated, or extremely sad. In between, there are days when in a lethargic state, she will just let things go by.

I don't fit the regular stereotype of a happy Mexican. Somewhow I learned very well to keep my emotions under control and to keep them to myself. So life is not as emotional when i am by myself. Jan bring this to my life. She has plenty of emotions, enough to last for a life time for the two of us. Someone once told me that "she wears her emotions on her sleeve", I find that a very accurate description of her. But, if she wears her emotions so much on the surface, I wonder where do I wear mine? in my socks?

Have these emotions affected our core commitments? Sometimes, in the heat of an emotional outburst, I hear her frustration with my limited ability to be there for her, with my shying away from her need and pain, with my inability to embrace her when she is in pain or feeling dyzzy and confused. Then, I hear her say: I can't go on anymore! When this happens, I struggle in my soul with my own feelings of inadequacy and selfishness.

A recurrent question I ask myself when I am in the dungeon is: what do I expect from a relationship with Jan?

blogging and hoping

2007-10-12T17:38:00.000-04:00

Hi all (those I know and those I don't), blogging is a wonderful tool to keep everyone informed about Jan's progress after her aneurysm last year. I am impressed of the number of friends Jan has collected over the years that still keep in touch. I know she has done her share to maintain these contacts alive. So, it is true that you reap what you planted. She planted friendship and that's what she is harvesting. In addition, she has this wonderful extended family that has made the wagon circle closer in her time of need. I say to all of you: cheers! May your love for Jan never dry up.
Her progress after the last surgery continues at one level. With no staples, her growing hair is covering the scar fast; soon it will be unnoticeable. She has said that she is ready to grow her hair long again. On the other hand, she is starting a new medication, yes, number 8. For a week she has to take both together, reducing the previous and increasing the new until she is only with the new. This new medication allows her greater speech skills but makes her drowsy. We don't know yet its full effect because there is a mixed effect right now. She is looking forward to stopping the medication sometime in the future.

For me, time seems to have frozen in multiple ways (I talk about my own experience because Jan asked not to talk about her thoughts or feelings, she prefers to do that for herself. Yes. most of this blog is my own take on the process). Time seems to be moving ever so slowly. I now realize that I'm running a marathon, when my conditioning was for hardly 100 meters. The daily grind is absorbing beyond belief; I often find it difficult to see beyond my nose. I experience life as empty of meaning. Some days, little makes sense. Just like Jan is having now trouble with making sense of reading or listening as a result of the medication, I also experience this disassociation between what I thought I knew and what I see, what I can grasp of the daily grind. There are days in which I feel all alone and puzzled, I realize how tough life as a main caregiver really is. I question everything. I feel I'm at the end of my rope; stretched to the limit; I doubt, I moan, I fall, I get up again, and then at the end of the day, I just remember that my call is to serve Jan today. Tomorrow is another day. I remember that I made a vow to Jan in our wedding that I would love her in health and in illness... and well, this is the time to do it. I am convinced that serving Jan is my most basic attempt to live in integrity: at some point in life I must mean what I say and say what I mean. "I must keep my word and honour my commitments". Anything else would be delusion and deceit. Some people find this out of the ordinary, but in reality, I would expect Jan to do the same for me, and I suspect everyone would expect their partners to be there for them in similar circumstances. It is the way we are re-wired when we meet Jesus. We have the wiring in place, it’s just that we are too busy with ourselves trying to change the original design. Why have I stuck to Jan? Because I believe Jesus did the same for me and because I pledged her my love in thick or thin. And, so, on a day to day basis I raise above the blinding pain and confusion and reframe my life. This is not easy.
I struggle with the existence and meaning of suffering. Jan’s aneurysm raised an old question in my mind, a question as old as the book of Job. Like him, we have suffered when the core areas of our life as a couple were touched: health, family, and finances. I feel troubled not so much by experiencing suffering, but by feeling that this suffering is undeserved. I have asked Why? Why her? I have protested loudly and I have not taken silence for an answer. I know that this suffering is not a form of punishment or divine discipline. When I look around I realize that the amount of pain does not correspond to the amount of wrong a person does, there are criminals who prey on the weak and defenceless who seemingly go through life without the punishment they deserve. Paradoxically, the opposite seems to be true: often those who do right are the ones who get knocked down and sometimes they can’t get up again. E. Peterson says “this is the kind of suffering that first bewilder us and then outrages us. Just like Job who was doing everything right when everything went wrong” . However, this is the kind of suffering that brings us closer to God, and instead of ending resentful and disappointed, somehow we love God more. God does not promise to take away suffering but we know that he is the God that walks with us through the suffering just as he showed it in Jesus -the suffering man-God.
Yeah, it is not easy to live through Jan's healing stage . Given the option, I would rather not choose this path. However, in spite of the suffering we have gone through, I find myself with more strength and inner peace than I could have imagined. Go figure.

Fede

The Staples Are Off!

2007-10-10T00:08:00.000-04:00

We had an appointment with the Plastic Surgeon who did the Craneal Reconstruction this afternoon at 1pm, right after lunch. Jan had become used to the staples on her head. It gave her such a 'Goth' look that they were really the envy of some teens.

A couple of residents came and took Jan's staples before the actual surgeon showed up, so there is no more staples, just the scar that is healing nicely.

This is -we hope- the last visit to the hospital. Her hair will grow out in time, unless you know of a secret recipy to help Jan's hair grow faster.

I will give more details in the next blog,

Cheers,
Fede

Reality Check

2007-10-02T23:39:00.000-04:00

It's been a week since the surgery. times is totally liquid. Jan was sent home last Friday. The medical staff felt she was stable enough and demand for beds was high. She has this hairdo as a result of the surgery that I am sure is the envy of teenagers, besides, for a short time Jan has more metal on her head than some youth who carry rings in every possible place on their faces. But she is happy that this surgery is over. We had been waiting for it for over a year, so you can imagine the relief.

She has good days and days not so good. Most of her energy seems to be taken by the healing. She has to face pain constantly, and the inconvenience of having to be extra careful with the 20cm. of scar and staples. She slept most of the day yesterday, feeling with no energy or desire to do anything else. Today, she struggled with pain and the side effects of her medication. And this seems to be the pattern for the next few weeks.

Yesterday morning she woke up with a swollen head. there was an excess of fluid on the left side. She felt lousy, but when I suggested that we should go to emergency she refused vehemently. We know what it would be like: to wait for at least 6 hours before an MD comes to see her. She felt faint but decided to rest instead. By the afternoon the sweling had receded and she was a lot better.

Keep her in your prayers. For a safe healing of this wound. For strength to go through the process. For pain relief. For hope that her neurologist finds a good medication that Jan can tolerate. For better communication and patience.

Here Jan' new look:

Jan migrated to D5

2007-09-26T14:45:00.000-04:00

Mom and I came to visit Jan and had a good lunch (she ate half of my lunch and tried to share half of the hospital version of her lunch). Louise and Sara came later and when we were in the middle of the visit, Jan was moved to D5. We say the familiar hallway, familiar faces, and to our surprise, there we saw Renat, the wonderful social worker from this unit. She came right along to greet Jan and recall the weeks Jan was here last year after the major surgery. In total, Jan was at this hospital for about 6 weeks, so we got to know the nurses, social workers and therapists. It is a strange feeling to feel we are coming back to a familiar place, but at the same time acknowledge that this is the kind of place one would want to spend the least amount of time possible.

At lunch, I ran into the plastic surgeon in one of the hallways. He was very pleased with the operation and said that if she continues this rate of progress, she may be sent home as early as tomorrow.

Jan's right side is weaker than it was a few weeks ago. It may be the pills or just the effects of the surgery. Her face is becoming a bit swollen from all the fluids draining down from the head. The doctor said it would be a matter of days before everything goes back to normal.

Stay tuned,

Fede

The New Hairdo

2007-09-25T22:36:00.000-04:00

Jan was in a lot better space today than yesterday. We arrived for the visit in the early afternoon. It was a scorching day out there! She called Mom and I to order for arriving late, indicating that she was feeling lonely all morning with no one to talk to because the nurses are all busy, and then, she settled into to a non-stop conversation mode for then next five hours.

I asked her if she had seen her new hairdo. I thought it was lovely. I said that she looks just like an independent teenager with an 'out of the box' fashion taste.

She said: No, these nurses and doctors are running all the time, they have no time to bring me a mirror. Mom didn't have one either, so I went to a nearby mall to find one. When I came back, Dad and Carol had arrived. So all of us had a great time seeing Jan check out her new hairdo. What do you think? Should she dye it pink or blue?

Her progress has been amazing from one day to the next. Of course, I am comparing to last year's experience, when it was weeks before she was able to say a word and more weeks before she could walk. She is taking an antibiotic as a profilactic measure, to keep the wound from infections and keeps taking her regular pill for seizures. Otherwise, she is very alert and in a very good frame of mind.

During the time I was there, she decided to go to the bathroom; the nurse and I walked on either side holding her hands, but her walk was very steady. She began asking for solid food when the chart indicated only fluids. She called two or three nurses and told them that she was starving, that she wanted some real food! One male nurse obliged and placed a special order for her. By 7:00pm Jan was eating her supper with such glee that everyone celebrated.

As you notice in the pictures, her bandage was taken off this morning. She was looking at the hairdo with delight and at her scar with curiosity. they cut exactly along the same lines made in the first operation. If experience counts, her scar will become a fine line in a few weeks and hair will cover it, so it will be invisible.

Many, many thanks for your love and prayers. You were as important in this process as the surgeons themselves (it's no exageration).

Blessings,

Fede

Surgery results update

2007-09-24T21:39:00.000-04:00

"God always does what he says, and is gracious in everything he does [...] God's there, listening for all who pray, for all who pray and mean it." Psalm 145:13,18

"O my soul bless God. From head to toe, I'll bless his holy name! O my soul bless God, don't forget a single blessing!" Psalm 103:1-2

Hurray! Jan is back!

The operation was a success! We didn't get a chance to talk to the surgeon, but his report through his colleagues was positive. The operation lasted about 3 hours and Jan was kept in the recuperation room for another 4.5 hours. Jan was awake when they moved her to the Intensive Care Unit at around 5pm today. She spoke to Mom and I as soon as she saw us. She was a bit dopey, but was able to manage a smile and also to give the nurse some instructions about the pain medication she prefers! 20 minutes after her arrival to the unit and she was already making sure everyone knew she was there...

She is looking beautiful! They shaved the front half of her head (about 2 inches above the hairline) and left the back half untouched, so she looks like a distinguished Chinese scholar from an ancient dynasty. She has a large patch covering the front half of her head, tubes and wires connect her to oxygen, an electronic monitor and an IV solution. We talked a few minutes and then left. She was tired and wanted to sleep. Sleep is the best medication for someone in recuperation. I think I am in recuperation as well because I am feeling quite sleepy.

She will remain in Intensive Care overnight, and probably, she will be transferred to a general ward tomorrow or the day after.

Thank you for your prayers and for strengthening our faith. We have learnt so much from this whole thing. In the months ahead we hope to have the time to share it with all of you. For now, join us in praising the Almighty! He has been good to Jan and me.

Fede

Jan is out!

2007-09-24T14:15:00.000-04:00

1:50pm. The volunteer in charge of passing information in the waiting room, told us that the operation went allright. Jan is in the recuperation room (I assume it is next to the OR area). We are directed to go to the 5th floor to the Intensive care unit, where she will arrive. This is the same Unit Jan saw over a year ago after her first visit to this hospital. the one that a day after Jan was moved to a general ward, was flooded and closed for a few weeks while crews worked frantically to repair the damage.

Teh surgeon came to the visitor's area when we were at the cafeteria. So we went looking for him to his office. He is still operating, so Mom and I went to the waiting area in A148 to pick the bags with Jan's clothes. We also have a blanket that she forcefully insisted we bring. She knows that the hospital blankets are not warm enough for her. Mom and I look like two hikers looking for a place where to pitch our tents.

Wait, wait, wait. This is the main game in hospitals. I wonder if this is why the main clients are called "patients". You need the patience of Job in this place.

Mom and I migrated to the small waiting area in the 5th floor. We are told by the nurse at the reception desk to wait for about an hour because there are no beds available... So we can't see her yet... We'll keep you posted.

FC

"C" Day

2007-09-24T11:06:00.000-04:00

Jan went into the OR at 10:15am.

She was calm and in a good spirit. A short nurse with a heavy accent came to take her from the patient waiting area in the 2nd floor OR section. She asked Jan a few standard questions about consent for the operation, recognition of her own signature, allergies. Jan joked that without her glasses she was practically blind, that she could not see the face of the nurse but trusted she worked for the hospital; the nurse did not catch the humour, but politely assured Jan that everything was fine. All we could she of her face behind the surgical mask and cap was a pair of dark eyes with very long eyelashes, she was probably in her early thirties. She checked Jan's bracelet and compared that to a card with Jan’s information to make sure this was the right patient. I could not help the thought that without these checks, probably in the past some patients were carried into the OR for illnesses they didn't have. From where we were, we could see the ORs, a series of rooms to the right of the hallway with sliding opaque glass doors. Right in front of us, a flat screen monitor with codes and info on each one of the ORs -just like the ones used at the airport for flight information- names flashing, numbers changing, nurses carrying people in and out of these rooms, people being wheeled-in, people being cut, people being put together, lives right on the line, some make it, others don’t. The nurse went into one of these rooms with Jan. This is as far as we were allowed to go. Mom and I picked up Jan’s bag’s of clothes and proceeded to the waiting area.

We started the day at 5:45am. I could not sleep, so I got out bed and went to the other room to do push-ups. Jan was half awake. At 6:15am we were all up, and left to the hospital at around 6:40am. There was hardly any traffic, so we made it to the hospital in a third of the regular time. Jan talked to Mom and as a co-pilot gave me instructions on every turn, every stop light and every movement the car made.

Upon arrival at 7:00am, we went to the day-surgery reception area in the G level, to check-in; where we waited for about 75 minutes for our turn. About 20 people sat there also waiting. At last an old black nurse came for Jan. About a half an hour later they asked Mom and I to join Jan. She was on one of this new sleek Patient Transfer Board (PTB)–in an adjacent area with about 10 cubicles separated by sliding curtains. This is where they ask the patient to strip of their street clothes and take off their jewellery, and are given one of these blue gowns with an opening on the back. This is where the social persona is left behind and everyone becomes a patient or the relatives of a patient. It’s like entering into a different country with different dress and behaviour codes. Illness is a great equalizer: no one can show off their expensive clothes or fashion shoes. People are united here by the fact that they all are suffering from one illness or another, wating to be cut and stapled together; their bodies are no more than delicate membranes filled with water. Everyone here is stripped naked, covered by the same thin humble robe, stripped of any delusion of self-importance and grandeour. It is clear that the only difference between one patient and the next is just the unique consciousness of an individual experience and the memory of it. We waited here for another 45 minutes and then we accompanied Jan to the second floor, to the waiting area just outside the ORs.

Mom had been reading aloud from a novel Jan likes. At times Jan laughed at the story. I heard the words, but could not attach any meaning to them, my mind was busy thinking about our presence here for the third time, about the last 19 months of our lives, about the lessons we have learned, about the profound changes in our personalities and faith.

At 10:15am We said goodbye, I love you, sweet dreams, and there she went, on that sleek new PTB, under the several covers because she was "freezing" all the time...

Mom and I went to the cafeteria to wait for the 3.5 to 4 hours the operation will take. Coincidentally, I bumped at about 11 am into Dr. Schwartz, the neurosurgeon, who was in line on the coffee shop. we had a brief talk about the clip jan ahs in her brain and he mentioned that he was "on call" in case they needed him for the operation (see recent blog!). But he was going into is office... hmmm.

FC

Surgery

2007-09-23T22:24:00.000-04:00

The surgery will be Monday, September 24 at 9am.

The preparation time has been emotionally draining for all. Jan is doing a lot better with the new medication, but still there are some side effects that Jan would like to get rid of.

I have learnt that neurology is more art than science, medicine knows still very little of how the brain works or heals and when a medication is prescribed, it is a hit and miss thing because each individual reacts to the chemicals in a different way!

But don't get me wrong, I still respect the efforts of the surgeons and specialists, even though their knowledge is so limited. They are courageous people to do what they do, knowing what they know.

Here is a picture of what they will "fix" in Jan's head, except that instead of the bone flap Jan will get a plate made of polymers:

Please join us with your prayers in this stressful time. Before, through and after science we trust that the maker of Jan's brain will protect her.

Fede

The Friday before

2007-09-21T16:23:00.000-04:00

The countdown has begun!

The time of the operation was moved earlier to 9:00am on Monday, 24-Sept-07. This means we will have to be there at 6:30am. I am feeling tempted to pitch a tent in the park across from the hospital to make sure we are on time.

This week has been particularly hard for Jan as she struggles with the 7th medication she tries for seizure control. The effects are just overwhelming and the difficulty to access the neurologyst on a short notice makes it more difficult. Her right side has been "emptied", as she describes it; there is little or no sensation, the right hand is totally limp most of the time, and there is a generalized feeling of unwellness all over. She says that her head "is out there" and indicates a point in front of her. She tires easily and is emotionally over-reactive. The quality of life is so low that we wonder what is best, to risk a seizure by not taking the medication or give up a normal life and live like a zombie.

I watched this afternoon struggle on the phone with the insurance company. In bits and pieces, she told them her frustration when she received this morning a letter from them rejecting her application for extended health because she had an aneurysm! We realized that now that she is down and needing coverage for medications, the underwriter let her know in no uncertain terms that she would not receive any coverage, which is the same as telling her that she is not welcomed to apply. Business logic? Discriminative action? At the end, it didn't matter. After talking with 8 people, she received the standard "we will call you later". She was loudly discouraged.

I wonder how could I (we) make her stronger so she goes to her operation rested and strong.

We are stressed even though we know it is a routine surgery.

I will print for her any emails you send. Make them short because she can't read more than 40 or 50 words at a time.

FC

Surgery number 4

2007-09-20T23:33:00.000-04:00

It has been 19 months and 9 days since Jan was rushed to a hospital with a blood clot in the left side of her brain the size of a golf ball. In the first three days, she had two operations to stop the bleeding and to repair the damage caused by the aneurysm.

Almost four months later she had another operation to get the bone flaps replaced above her left ear, which had been kept out of head and in a freezer, to allow extra room in case of swelling of the brain. The operation was not a complete success, because the bones were already dead after all these weeks in a freezer. Jan came out of this surgery sporting a perfectly round head -only for a few weeks- and with the onset of seizures that still plague her until today.

Her body did not "recognize" this dead bone material and began to dissolve them slowly, leaving her head with a dent on her left temple. The neurosurgeon, in a consultation last November, agreed with Jan's request that the dent had to be fixed, and so the lengthy process to schedule an operation began.

10 months later, the neurosurgeon who fixed the aneurysm and the plastic surgeon who put the dead bone pieces, finally found time to fix this problem. A polymer plate has been "designed" to match the contour of Jan's head. It will be attached to her craneum with titanium screws after the old dead bones are cleaned out. According to both surgeons, this surgery is low risk, because they will not touch the brain again, they will just work over the "dura madre" (the hard membrane that covers the brain), place the plate and then close the skin again. All this will take about 4 hours. Yeah, there is no drive-in for this kind of surgery! Then, Jan will stay 3 or 4 days in the hospital for observation, to make sure everythis is allright.

The surgery is scheduled to take place on Monday, September 24, starting at 12 noon.

Why am I telling you all this? Because we need your prayers. Not to change God's plans, but to strengthen our faith and patience.

If you happen to feel that you want to send some love our way, we will welcome it with open arms.

How can you send love to us? Well, we will leave that to you. However, be assured that we will know and will be glad when we receive God's love through you.

If you want to keep updated, check the blog: http://jangetwell.blogspot.com

If you want to drop a line for Jan, write directly to her at: janitawalton@gmail.com

Thank you for being there for us all this time.

Fede and Jan

Reconstructing Jan

2007-09-18T23:49:00.000-04:00

Hi all,

I know, I know, I didn't keep updating the updates more often. Strangely enough, I feel no remorse. So, here are the latest news:

Jan, Mom and I went to see the plastic surgeon today. He has scheduled Jan's head reconstruction for this coming Monday, Sept. 24, 2007 sometime in the early afternoon.

They got last week the polymer plate that will make Jan's head round again. Jan will be doing some pre-op tests to make sure everything is on order.

The operation is expected to last about 4 hours. the first part will be done by the same surgeon that clipped Jan's aneurysm, the second part will be done by the plastic surgeon.

After the operation she will go to the neurological ICU for the following 24 hours. Is she is doing well and there are no complications, she could be home in 3 to 4 days.

They showed us a picture (CTscan) of Jan's craneum and how it will look like after the operation. I must say it looked beautiful! So Jan is willing to go for a few weeks with a half- shaven head

This operation will cut only the skin and clean what's left of the flap bones. It will not cut the membrane covering the brain (dura madre), so the brain will be untouched. They hope not to bruise the brain.

Jan had a big sight of relief. This should be the last operation related to the aneurysm. I saw her very happy now that she will be growing her hair long again. She told me that she had not cut her hair short in all her life!. As you can see, her vanity is intact, perfectly undisturbed by the aneurysm. :)

Here is what you can do (if you are going to do anything):

1. Pray that the surgery may be successful in all ways, this will ensure that she will not have to go back in the future for more surgeries in her head.

2. Pray for the family, as this is an added stress in an already stressful time for several how are experiencing medical difficulties.

3. Check the blog for updates (I will try to post daily progress notes)

4. If you decide to visit Jan at the hospital, remember:

that she loves your company, but she needs quiet and rest.
that she needs you to bring positive energy to her, if you are not in a positive frame of mind, please don't come as this will only drain her energy.
keep your visit short.
she needs your touch, but do it ever so gently, as the medications have made her over-sensitive to touch. Remember that her right side is over-sensitive.
When visiting and talking to her come to her left side as her vision on the right is limited.
She loves your greeting cards better than stuffed animals or toiletries. You don't need to buy expensive cards, be creative and make your own! She loves original art, particularly if it comes from you.
Bring a recent picture of you for her collage and write your name on it so she can practice repeating your name.

I found this very useful list in a wonderful book written by an MD who is an aneurysm survivor. It should give you a good perspective of what patients need. Of course, this surgery is not as instrusive as the one when they clipped Jan's aneurysm, and jan has already "graduated" deom many of these stages, but the list is still useful to make your interactions with Jan more satisfying for you and her.

40 Things I need the most

1. I am not stupid, I am wounded, Please respect me
2. Come close, speak slowly, and enunciate clearly.
3. Repeat yourself -assume I know nothing and start from the beginning over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am here –come find me, encourage me.
8. Please don’t raise your voice –I am not deaf. I’m wounded.
9. Touch me appropriately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV or nervous visitors. Keep visitations brief (five minutes)
12. Stimulate my brain when I have the energy to learn something new, but know that a small amount will wear me out quickly.
13. Use age appropriate educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything.
15. Teach me with monkey-see, monkey-do behavior.
16. Trust that I am trying –just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid Yes/No questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognitive ability by how fast I can think.
20. Handle me gently, as you would a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is so I know what I am working toward.
27. Remember that I have to be proficient at one level of function before I can move onto the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
30. If I can’t find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don’t assume that because I cannot play like I used to play that I won’t continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops! Create a healing team for me. Send word out to everyone so the can send me love. Keep them abreast of my condition and ask them to do specific things to support me –like visualize me being able to swallow with ease or rocking my body up into a sitting position.
37. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
38. Be protective of me but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.Remember that my medications probably make me feel tired, as well as mask my ablity to know what it feels like to be me.

(from Jill Taylor, My Stroke of Insight, 2006)

Making space for a miracle

2007-08-30T23:14:00.000-04:00

Last Monday when the men's group showed up at the hospital to give emotional support, I was in a low point. Feeling shipwrecked in the middle of an ocean of hospital red tape, I was ready to grab any sign of support coming my way. Somehow Orest must have felt how I was. He called late in the afternoon to ask if I was open to meet at the hospital with the group. I accepted without any hesitation. They were going to visit another man in bad shape at a rehab place, and then they would be at the hospital where Jan is.

This group of men meets weekly after work. The meetings go from 7pm to 10 or 10:30pm in an office or in a park. This is not the first time I belong to a men's group, but this is the first time that without any affinity with the group other than being a male, I was willing to give and receive support from other men. The only person I knew from before was Orest, the rest were perfect strangers to me. This is why I found their support more refreshing and genuine. When these men came to meet me at the hospital on a Monday late at night, just because they made the commitment to support me whenever I am in need, they are teaching me more about compassion than 100 books. Counterculture, no doubt. Undoubtedly life strengthening. Simply, men helping men. And I welcomed their visit and filled my need. No hocus-pocus. No deep dissertations about the nature of pain. They came and share with me personal stories. One of them told me how he kept afloat just going day by day when his wife was dying of cancer, another shared his insight on how to react from what he is for his family rather than from what he feels when his wife slams doors because she made her angry. Orest challenged me to make room for a miracle. And the day folded in a peaceful note. I felt comforted by the compassion from my friends. I realized that night that I was including them slowly also as my people. Fede, the island, was joining the continent!

Two days went by. I kept thinking about Orest’s comment: how to make space for a miracle.

Last night, during my visit, I had read Jan the story of how two blind men followed Jesus asking to be healed; how he told them:
-"become what you believe",
and then their sight was restored (Matthew 9:27ss). She repeated slowly the words
-"b---become, b---believe"
and soon after went to sleep.

I went home thinking about the profound interaction between what we believe and what we become, this was one of the core lessons in the Leadership course. If I believe that the tenets are light posts that will make me a better leader, and if I act on this belief, I will certainly become a better leader. Then, I thought that the notion that “I am the source” [of my problems and solutions] could be also applied to health. More than 80% of our sick-time is caused by psycho-emotional problems. We make ourselves sick 8 out of every ten times!

I know that Jan’s aneurysm has little to do with what she believes, but the dozens of health professionals we have dealt with in the past 18 months have told us that her recovery would depend in great part on her belief and attitude. She would go as far as she was willing to go. In the story of the two blind men, Jesus put the solution back on them. It was as if he was saying that “they were the source” of the recovery of their own sight! Their belief that they could be healed was the key. Were they ready to own their results?

Against all prognosis and statistics Jan had recovered a big portion of speech, and movement. A bit over a week ago we were biking in the park. Then, suddenly, all sense of balance was gone. One day, she woke up feeling dizzy and without any balance she fell to the ground and could not stand up again. Now, a week later she was still dizzy, without balance, loosing speech and movement and feeling miserable. I saw this situation as a way of making space for a miracle. All else had failed. So I went to bed with this question: how would it look like if Jan and I believe that she is the source and that we have been given the tools for her to be well?

The neurologist still had no idea this morning about what is going on with Jan. He wants her to have an MRI, but she shouldn’t until they know the material of which the clip in her brain is made. But they can’t find out because the surgeon is on holidays, and on and on…

When I called her at lunch time she was going downhill. She could not enunciate words, she was crying inconsolably all the time she was on the phone. In fragments of words I understood:
-"..I ssss..leep 'til noon..., I wwwwant home, pppplease, no more p----pills!, I don't w---want to be here. I am getting w---worse".
I could hear my heart joining her cry with a low, deep moan. This is my wife, I thought, the woman I pledged my love. What is there to do when the medical establishment doesn't know what else to do? I mumbled some comforting words to her and cried in silence on this side of the telephone line for a few seconds. Then, I asked her:
-"do you believe that somehow you could get better?".

Up until this point we had believed that the doctors were going to find a cure for whatever Jan had. But they had gotten stuck in a quagmire of paperwork and liability issues of their own make. I thought that maybe this was a good time to believe “outside of the box”, so to speak. What was there to lose? And so, I repeated my question to her:
-do you believe?
-She said “Yes, of c---course. I k---know.”
-“I love you” I said.
-“Me too. Bye now”, then, she hang up.

I arrived at the hospital at about 6:25pm. Jan was circling in the middle of her room with her arms outstretched and a huge smile on her face. I asked her a bit surprised:
-”what happened?”.
She said,
-“I am well now! [her aphasia was hardly noticeable] I was sitting here all afternoon f-feeling sleepy and dizzz-zy. Then, I felt s-something f-funny inside my ear. I began to wiggle it, and pull it, and all of a sudden… pop! I felt fine. My head was clear. I stood up holding the wall, thinking that I was going to feel dizzy, but I felt fine! So, I let go of the wall and began w-walking without any support or help; then I began walking in circles, and then you came in! I am fine! I am well!!! Ha, ha, ha!”
With her arms outstretched she came to the door and hugged me. I was overflowing with joy. So I asked her,
-“So you… you believed?
She said laughing:
“Of course! The Lord heard me say that I had had enough. And here I am, well. Praise God!”

About 30 minutes later the neurologist came doing his rounds. I had brought my guitar and was singing with Jan to celebrate. We both were sitting on the bed. He knocked gently at the door and walked in. Jan received him with a big smile and then suddenly she stood up without any help. I saw that he was quite surprised to see the improvement. He said that he didn’t have an explanation for this dramatic change and ventured a couple of not very convincing diagnosis. I think he is a compassionate man, because soon after he just expressed his relief for Jan and told her that she could go home tomorrow. The MRI will be done later, when the paperwork mess is sorted out.

Is there room for a miracle in my life? Well, I just witnessed one. It was as if Jan would have found her “mojo” and opened her heart to freely express her faith that she would be well. I know I used all my "mojo" to believe with her that faith had to have some concrete application.

Is there room for a miracle in your life?

FC

Dizziness

2007-08-27T00:19:00.000-04:00

Jan is back in the hospital with a dizziness and lack of balance that no one can explain.

SinceWednesday she has undergone many tests (CT scans, ultrasounds,ECGs, Dopler, etc.) to find some cause to this problem. She was kept in the hospital because of her aneurysm; dizziness and change invision are two of the five major symptoms of a stroke. So the doctors decided to act with caution and admitted her on Thursday.

She is in a good spirit and impatient to get some answers. So am I.

My first reaction was to act small, complaining about the medical systemand the MDs about their wishy-whashy answers, being impatient with the nurses and with the commotion of the Emergency Room. As if anyone had the power to puch a button and stop the ocean of pain that floods the ERs. But then, I realized that I was the one who called 911!! and that these people were doing the best they can under incredibly stressful circumstances.

The second day, realizingthat this was not going to be solved right away, I decided to change my mod and see this situation as a chance to react with integrity. She is now in a quiet room with a beautiful view of the lake.

What Jan needs most ispeople who bring her energy, not people who drains her of her energy,and when I act from my smallness this really drains her from her energy. I have made the point of keeping all my conversations with her aligned with my purpose of being an energy-giver to her. So far so good.

We keep very close to each other and we both have deepened our faith regardless of the challenges and outcomes. I find this very liberating.

I will have to keep balancing my regular life with spending time withJan. It is possible that I won't post much in the next few days, butI wanted to at least share with you my whereabouts and my current main struggle. I want to participate fully with Jan these days and be compassionate with her and with myself.

In these days of extraordinary circumstances, I need to use extraordinary lessons.

Fede

My left brain and I

2007-07-26T00:38:00.000-04:00

Ever since Jan was rushed to the hospital I became intrigued, thirsty and a times desperate for more knowledge about how the brain works. I wanted an answer to my questions: how much function is Jan going to recover? When can I say this is as good as it gets?

Unfortunately the specialists limited their answers to euphemisms. I didn’t know if they refused to tell me more of what they knew or they were just being candid when they said that they knew very little about how the brain works and heals; that Jan’s determination would define how far she could go in her healing. This, of course, was an invitation to go find more information.

I remember the first time I took her for a wheelchair trip around the hospital. She had been there almost two months. She could hardly sit straight and carried her head to the side. The right side of her head had her usual long hair; the left side had been shaved. She looked like one of these modern girls with a weird hairdo. She had a big dent about 4 inches long by 3 inches wide and an inch deep. The surgeon had kept the flap bones of her skull out to give her brain some room to swell. She could not talk, nor could she stay focused more than 10 minutes. She cried unexpectedly and then she would just drop her head without any strength like a rag doll. The surgeon had surgically removed the portion where the language centre was originally. How was Jan ever going to speak again?

That was over a year ago. Somehow Jan’s brain has re-written the language program in another part of her cortex. Medical science doesn’t know how this happens, but it happens. Slowly, over many months, Jan has rebuilt her ability to speak. She still can’t find some words, but her conversations are getting better all the time. Her right side is regaining feeling and movement. So, what happened in her brain? What part told the other to help? What part re-wrote the dictionaries, What part linked them with memories and emotions? Which part creates the words? which part understands the words? Which part reads the non-spoken part of communication such as body language? How does it all come together?

I wanted to know how far Jan would heal, how I could help. I wanted to know more about her brain and mine.

So, I began reading all that came to my hands about the brain and its injuries, about it incredible capacity to rebuild itself, about the wonderful plasticity that shows its capacity to change and adapt all the time.

(will continue tomorrow)

Doing well

2007-07-24T17:28:00.000-04:00

Hi all:

OWNERSHIP STATEMENT
If there is anyone out there in cyberspace reading this blog, I want to make a statement of ownership. All the views in this blog deal with my views and opinions about Jan's journey from the top of her life to the edge of death and back. Other that a couple of lines she wrote months ago. The rest is all from my own head and heart. Jan may or may not agree with my views. if you want to know how she is feeling, you better talk to her (yes! albeit slow, she can talk to you on the phone.)

Life as leader

I am getting as much from life as I am putting into it. That's right! I only get what I give. If I give sadness, that's what I get. If I give hope that's what I get. If I take myself out of the game, that's what I get: I'm left out. That is a basic lesson in life. That is essential knowledge for a leader.

Jan is a leader in life. She is doing wonderfully. She was taking a drug to control seizures that produced many side effects: sleepiness, reduce language ability, nausea, irritability, etc. Last week her physician changed the medication and she is doing woderfully now. She even took hope when the physician told her that if the seizures do not recurr in a year, she would be free from all medication! Halleluja!

I was travelling for a week, when I came back this morning I was the one who was speechless, she was moving her right side almost freely and her speech was excellent.

I love my Jan wherever she is in her recovery, but this morning my heart filled with hope that she will regain even more functions just because her hope and belief are so strong. She is getting what she is putting in life. All the physicians that have seen Jan since her illness have repeated that the degree of recovery of functions depends mostly on the patient's determination to get well. Believe me, in her circumstances, I have not seen anyone as determined as Jan.

An hour after I arrived, she left for a three day camping with all the females from her family! She is able and expects everyone else to hold her able. Beginning now, I am holding her able as well. This is the end of treating her as a disabled person. Besides, she gets more support when people hold her able.

I know she is having a lot of fun right now.

Fede

How Jan is overcoming her aneurysm

2007-07-05T14:07:00.000-04:00

Jan had an aneurysm on February, 2006. The first prognosis was not good, but as time went by, a more optimistic picture emerged. Two lessons came from the many meetings with doctors and friends: first, no one knows how the brain really works or how it heals; second, that the healing is as unique as each individual is, that a big factor in the healing lays within the individual, in the determination to get well.

The following reflects these lessons.

Jan cannot find the words
-She can’t find them in her mouth-.
Jan is a painter without a canvas,
a musician without an instrument.
Jan can see the words
-she has them in her head-;
like a palette of a thousand colours,
endless scores of songs,
words to shape visions,
words to build belief
but Jan cannot find them now,
she is in a brawl with aphasia.

Jan’s world was born of words:
a universe painted with words
chiselled out of adjectives and nouns,
her life is a watercolour of verbs,
Jan was born a wordsmith
her purpose was to talk life,
to make words of truth
to make words of beauty
to make words of goodness.
Nowadays, life is at a standstill,
aphasia withholds her words.

In the most fundamental sense
Jan is a poet, Jan is a maker.
With broken words
She makes God present
She makes life urgent
She makes music essential
Jan is remaking her tools
the tools aphasia shattered
Jan will write new poems
Jan will paint new paintings
Jan will sing new songs
because her faith in God
and her love for words
are bigger than aphasia.

Fede

The strain of Aphasia

2007-07-02T23:04:00.000-04:00

Communication between husband and wife is a challenge under normal circumstances. Communication with a spouse with Aphasia is a similar challenge, but multiplied dozens of times. Two major factors of danger and opportunity that Aphasia brings into the equation are the lack of words to convey clearly and effectively ideas; and the inflexibility of thought that accompanies the recovery from the brain injury tha caused the Aphasia.

We are strained to the max in our communication. She is frustrated that she is unable to communicate as effectively as before, I am frustrated because understanding her is more of an emotional battle than a linguistic process. We spend the normal level of energy communicating and then lots of emotional energy that we have to invest trying to disentangle emotional reactivity from concepts and ideas.

I suspect that Jan relies more in her limbic system to communicate than any other part of her brain. "Wearing her feelings on her sleeve" is another way of saying that emotion supercedes thought and words.

Was this always the case? I don't information from a long period of time before the aneurysm to be able to answer the question, but from anecdotal information, she seems to have been an "emotional" person.

At the same time, she worked very hard at raising her communication to a high level so she could live from what she calls "a place of integrity"; she participated in many courses and worked under supervision with a personal coach developing clarity, integrity, and truthfulness in all of her communications. She excelled at this, but there was a question of balancing integrity with compassion. She expected all to be at the same level she was. Nevertheless, truth without compassion can only produce conflict. Compassion without truth can only produce delusion. How can we communicate in truth and compassion at the same time? How can we confront people with the truth (of course the beholder's version) and produce peace?

In spite of the aphasia, she insist on telling things as she sees them (her truth), which is something to admire, but at the same time, she shows inflexibility and inability to take feedback. Our conversations lately are more verbal battlefields than enjoyable exchanges where we can know more about each other.

We are under tremendous pressure to find a balance and protect the relationship. She will have aphasia for a while, so we must change something, and the burden falls on me, to be able to have reasonable conversations. The alternatives are so bleak that we just have to continue reminding ourselves of our pledges to be there for each other...

FC

Good Bye Teacher

2007-06-20T11:23:00.000-04:00

After 25 years of teaching, last week Jan had to come to terms with the fact that Aphasia and teaching do not mix. After a rewarding and successful teaching career, last week she had to quit formally her job. This was the end of a another dream.

She cannot teach because the basic skills of a teacher of grades 7 and 8 are language and memory, two of the abilities Jan lost after the aneurysm.

So, what would do you do? You could go to a corner and pout and complain about the unfairness of life, be miserable and make life miserable for those around you; or you could look at the challenge in a different light, keep things in perspective and look, really look at what is God doing here.

Jan has taken a very deep journey into her soul during these sixteen months. She has walked in uncharted waters, she has held her fear in check and in spite of the pain and wordlessness she has to struggle with, she has understood the nature and the purpose of her aneurysm by taking a higher perspective. She says: "this is only a small part of what life is. I trust that God knows what he is doing". So instead of anger and despair in the face of the enourmous losses she has incurred, with all diginity, she opens her hands to let go of that which she held precious for so many years: being a teacher (in a classroom).

One by one she has buried many dreams. Perhaps not one as essential as this. But she has done it with dignitiy and with a thankful heart. No regrets. She received as much as she gave: love, dedication, effort, excelence. For her the students were like flowers that have to be tended to with patience and love, so they can bloom freely in their own time.

She doesn't know when and how much language she will recover. Anyone who knows Jan should also know that she expects to recover all. In this she continues to inspire, to set the bar a notch higher.

Accepting the reality for now meant to step aside, for now. If you know of effective ways to hope and pray, join her in her hope that one day she may be able to teach again.

The amazing Jan is grieving her losses, however, she was playing the piano and singing last night...

FC

Call us for Jan's new email address if you wish to correspond with her. Sorry we can't post it here because of spammers.

Boxed-In

2007-04-28T23:07:00.000-04:00

We have been living in boxes for the past three or so weeks in preparation for the move. It's been an exciting time (to say the least) complete with all the suspense and unexpected turns that one can think of. Thankfully, we are two days away and then the unpacking will take some time before we can get back to "normality". Word has gotten around about the move and the always ready to help friends have already called in to enlist. Thanks!

We will be moving on Monday, the weekend move didn't work out. But some will come to help get things ready and move some delicate things like plants, frames and the like. I get the impression that this is like party time for Jan. Most of her friends get the impression that she is specializing in moving (4 times in 24 months!)

Jan has been extraordinary in the process. She puts in long days selecting, throwing away, an packing what's left, in spite of the headaches she has for the last few weeks. The headaches seem to be related to the "loose" bones in her let side, which will be replaced with the operation.

She has been struggling with strong headaches. The family doctor was advised but only under pressure she proceeded with a referral to a neurologist to follow Jan's situation. The health system ("illness system" rather) only acts when there is an illness or a catastrophe, if the patients looks more or less OK, then it just becomes

Yesterday we went to the hospital for a CT scan in preparation for her surgery. The whole process took no more than 10 minutes from registration to the good-bye. It was so efficient that she didn't have time to complain.

The past few weeks have been rough in terms of emotional reactivity. Anything can trigger strong reactions; right after, she is left totally drained and dizzy. It is hard to witness and be part of these events. I too, feel drained and worry about the impact on her healing. Her personality seems to be magnified by the process, and communication is seriously affected by the aphasia, which makes things more difficult than the normal maneuvering through the days. I appreciate very deeply all the support from family and friends in these trying times.

Someone asked me about my outlook of these process, and I had to dig deep inside to answer that this is about character formation, which starts with keeping the promises I made to her at our wedding. If I told her that I would love her in any circumstances, then, I better start meaning what I say and saying what I mean. It is not easy on a day to day basis to remember what I pledged her, sometimes my feelings scream the opposite, but I have learned some time ago that love is more than a feeling, it is commitment, patience, hope and all the other things listed in a previous blog. In a crisis, after all the pain, frustration, doubt and half-cooked conclusions have subsided, there is a strong sense of purpose beyond our circumstances that keeps us going.

One day I will have more time to explaing this purpose, for now I have to go back to the boxes...

Fede

Surgery

2007-04-14T22:41:00.000-04:00

Update on Surgery.

Last Wednesday Jan and I went for an appointment to the Plastic Surgeon. Initially we thought that the vist was going to be actually the surgery to "fix" the problem with Jan's bone flaps, which seem to have broken and be loose. The explanation we were given is that after four months of keeping them in a freezer at the hospital, when they put them back in, Jan's body didn't "recognize" the flaps and it began dissolving the bone flaps. The Plastic Surgeon confirmed that the bones bay have been already dead when they were re-inserted. So, now, she has to get some computarized prothesis in the next three or four months. Eventually, jan's hear will look normal, it is a matter of time.

We know many of you expected to find Jan recuperating from surgery this week, instead, she is around as always, speaking more and moving more somedays, and then struggling with aphasia and right neglect other days.

Thanks for your support and prayers for Jan. She (we) need them all.

Fede

Moving

2007-04-03T16:04:00.000-04:00

Yes, we are moving again! Write down in your calendars April 28 and 29 as the "M" days, and find your "moving" attire to give us a hand. We need your help!

When Jan came out of the hospital, I found a new apartment close to the church and with access to a nice backyard. It is a basement suite, and being an urban rat I didn't even think for a minute that Jan would object. Well, shec ame with me when we found it and she agreed, but using her prerrogative as a woman to change her mind, she changed it once we had moved. She agreed to wait until the winter was gone to plan the next move, and here it is!

Finding a place in the 'hood has been quite a challenge, not because there are no options, but because Jan is "choosey". So, pray for guidance to find the right place, a place open to everyone, a place of good cheer.

Call us if you are coming. Thanks! Gracias! Merci!

Fede

A portrait of Jan

2007-03-29T12:40:00.001-04:00

A portrait of Jan:

One October night, four friends came to dine with us. One of them wrote this poignant portrait, three and a half months before the aneurysm)

"A woman who carries herself with grace and efficiency. Slim and strong. A brunette beauty with a classic bone structure. She would be a beauty in any era. She speaks in low, warm tones and is surprisingly authoritative without being domineering. Jan laughs and smiles easily, ready to see the fun, the humour, ready to celebrate. A brave adventurer, she's travelled and taken other bold risks. Fede, her beloved, a case in point. Oh, how she delights in him, admires him, trusts him. She herself inspires trust. Some people do, at first glance. She's one these. Immediately, it is seen that she's solid and sane. Her eyes are clear. She has nothing to hide.

Her keen curiosity has led her to a wide range of literature. There is something traditional about her -a wholesomeness associated with a past era, or a t least to a rural setting. She's clean and openhearted. Her kindness is inherent, so natural to her; it seems to be unthought of.

But make no mistake. This is a woman with backbone. She has a will, and as warm, kind and gracious as she is, she owns herself and can't be pushed around..."

--------

The aneurysm took Jan's abilities with speech, mobility and memory for a while, but inside that battered body, I often find exactly the same Jan described in this portrait.

FC

Changing gears

2007-03-26T14:34:00.000-04:00

Dear friends

New and exciting changes are happening in our lives. Keep posted to know about them!

Jan continues to face challenges these days. As time goes on, it becomes clear what functions are restored and what functions may or may not come back. She has made progress but she still faces major challenges.

She has developed quite a lot of mobility, she is taking Yoga, she volunteers twice a week at the church office, she is taking a weekly workshop, and assisting in an Alpha course once a week. I addition, she is taking a computer course to use an assistive device (a talking computer!), and is beginning to take a speech therapy class. So her schedule is quite busy.

On the rehab side, she struggles with the anti-seizure medication which affects her speech and mobility and makes her drowsy. She experiences also problems with fatigue and a number of other cognitive and communication challenges (see list in last posting)

She reads her email (janitawalton@gmail.com) and answers all the notes; drop her a note! She loves hearing from her friends, and now with this assistive device, she can do a bit more because it "talks" to the pc as well.

Keep in touch!

Fc

List of potential problems

2007-03-18T01:46:00.000-04:00

I was very moved yesterday when you filled a self-assessment of a list of possible problems after a traumatic brain injury, such as your aneurysm. I have attached below a copy of the list. It may help friends and family to provide a context when they see some of the problems with which you are struggling. Recovery from a brain injury is a long process that can be made longer without useful information.

A few weeks ago you told me that we both had an aneurysm. I agree!, and I would extend this statement to all the family and close friends. Although you are the only one that landed in the hospital, the impact of the aneurysm reaches all those who love you, all of us feel the loss, the pain, the desire for you to get well; all of us feel at a loss of words when we see you trying to find a word unsuccessfully; we feel powerless when you get tired and there is nothing we can do about it; so it helps to know what we may be dealing with, not so much to put a label on you, but to reframe our reactions and have more productive conversation and interactions with you. All of us have to learn to deal with the aneurysm.

I was moved by your reactions, because you cried when you marked most of the items in the list as problems you face right now. I realized that even though you were aware of them, you had not seen them together in a list. On the positive side, this list gives us a measure to gage your recovery.

Fede

------------
Possible problems after a traumatic brain injury

Physical
* Balance and co-ordination
* Difficulties or inability to walk
* Weakness or difficulty moving arms and legs
* Abnormal muscle tone
* Changes in sensation (ie. areas of numbness and tingling or areas that are overly sensitive)
* Decreased energy and endurance
* Problems with fatigue
* Difficulties sleeping
* Changes in hearing, seeing, smelling and tasting
* Light and sound sensitivity, ringing in ears, dizziness, light-headed feeling
* Changes in appetite, either not hungry or very hungry
* Swallowing problems
* Chronic pain, including headaches
* Increased sensitivity to caffeine, alcohol and other drugs
* Possible seizure activity

Communication
* Difficulties speaking (forming words)
* Difficulties understanding words/conversation
Inability to write
* Problems reading and understanding what was read
* Unable to stay on topic
* Problems thinking of the right words
* Difficulties expressing ideas in a concise way

Cognitive (thinking)
* Disorientation to time, place or person
* Poor concentration, easily distracted, unable to stay on topic
* Memory problems
* Slowed thinking and slower to respond
* Difficulty with reasoning, reaching logical conclusions and judgment Mind gets stuck on one issue
* Difficulties keeping track of two or more things and following a sequence
* Problems planning, organizing, problem solving, making decisions and initiating tasks
* Needs direction and structure to accomplish tasks

Problems with pacing activities
* Acts on impulse
* Difficulty dealing with change
* Lack of awareness, insight into problems and/or lack of acceptance
* Lack of flexibility in thinking
* Concrete in thinking

Emotional
* Irritable and easily frustrated
* More sensitive to stress
* Depression
* Lack of facial expression
* Emotional outbursts
* Emotional (crying for no apparent reason)
* Withdrawn from family and friends
* Poor coping skills
* Feeling of grief and loss
* Behaviour and social skills
* Hard to keep up in social situations
* May be inappropriate - emotionally, behaviourally and sexually
* Self-centred; childish behaviour
* Personality changes (i.e. no longer outgoing)
* Changes in difficulties with relationships, especially with family
* May be impulsive
* Compulsive talking

Functional
* Decrease or inability to do the following: self care tasks; household management tasks; drive a car; work or return to work; be involved in previous social activities or hobbies.

Source: The Ontario Brain Injury Association

Of time and friends

2007-03-07T22:36:00.000-05:00

Dear Jan:

As the first anniversary of the "A" day came and went, we are finding out that time is our greatest challenge to face.

Time has this quality of softening the sharpness of pain to a point where it is almost a soft a sand, of mitigating the urgency that novelty has. Do you remember? the first few weeks after the "a" day, friends and relatives were really eager to see you, to know about you, to do something to express their feeling for you. As time went by, and knowing that you had survived, the visits dwindled, the phone became silent, the mailbox filled up with dust and snow. This happens everywhere to everyone. Time and the heavy demands we put on our limited days slowly normalizes your on-going battle with rehab look more like everyone else's battle to survive. Time has made your presence among us "normal" again.

The upside of this is that you are welcomed in almost every situation. Everyone makes concesions to accomodate the extra time it takes you to do things, to speak, or even just to move. Everyone suspend judgements when your behavior is a bit odd because of the communication disability or the fatige. All seem glad of receiving an opportunity to extend grace to you, to be considerate and sensitive. It always makes one feel good to be good to someone else.

The downside is that been seen as one more in the bunch, you do not receive any special attention, or the extra visit or the call that at the beginning used to be so important to the giver as well as to you, the receiver. Without the emergency factor, time just levels everyone in the appointment books.

And so, here you are, not being able yet to remember who has called you or wrote to you. Your memory has to be refreshed everyday to make calls and when you make them, you cut them short because that is all you can handle. Your emails are minimalist, because that is all you can write. And as time goes by, you try to fill your days by volunteering at the church office, at the rehab hospital in the area, by meeting on a regular basis with one of your most faithful friends, by going house hunting with me, by taking long walks in the neighbourhood by yourself. Your friends may have gotten busy, but you are certainly not waiting for them.

The Aneurysm slowed you down, but could not stop you. The cold cannot stop you, the distances cannot stop you, in spite of time, you go on making progress and expecting to get everything back... you were promised this much...

Everytime you see a friend you react as if it was the first time you saw them. So much joy. Seeing time in a slower motion as you do now, may be a blessing because you get to enjoy more the time spent with those you love. Really, time has just seasoned your friendships. So, in spite of the few and far between encounters you have with them, time in you hands is transformed into a glue that keeps you close to them.

I am glad for your optimism and your skill for keeping friends.

FC

Does love have a limit?

2007-03-02T21:58:00.000-05:00

Dear Jan:

While I am re-starting the blogging after a month, honestly, I enjoyed the vacation. I didn't know if I wanted to continue blogging, partly because I have no idea who reads this blog anymore and partly because I don't know how to convey the emotional and mental exhaustion I am feeling these days. But then this morning I reminded myself that one of the main reasons of this blog was the fact that it was a great help for me to write things out, this way I clarified thoughts and feelings and I had a chance to see facts in perspective. So, here I go again.

There's been huge progress in every area touched by the aneurysm. You move better your whole right side, your energy last a bit longer and your speech improves in spurts. Everyone who has seen you comments on these improvements. At the same time, you also take some steps back now and then.

This blog should stop right here. Everyone would be happy to know that you are going forward.

However, you say repeatedly that I have to say the truth. And the truth is that life is more complicated than it looks.

Some days everything seems clear and I can see that your convalescence is not permanent, that one day you will just come back to the functioning level you had before the aneurysm. You will be the bright woman with a clear speech and a sharp mind that captured my attention. You yourself repeat this vision when the doctors state that what you got back at the one year mark is as good as it gets. I remember how irate you were after the meeting with your neurosurgeon; you said, "Obviously, he doesn't know me". To be sure, in the last six months, you have made progress against all prognoses mostly based on your character. Tough as nails, you have refused to let anyone "box in" your hopes and continue the uphill battle to regain speech, reading, writing and movement functions. On days like these I just love you extravagantly.

Other days are very dark, full of pain and tears, of moaning when there are no more words to express the isolation, depression and sadness that Aphasia forces upon you. I say something and you hear something else, you say something and a minute later you change what you said, but can't remember the change and feel harassed if I point out the change to you. I feel like we are speaking to each other in languages we don't mutually understand. On days like this I wonder where reality ends and madness starts. On days like this, I feel like the most insensitive man on the planet, a little ogre that is more interested in defending himself than in listening carefully to you and giving you the time you need. In days like this you just put on your snowsuit and walk out. It is in days like this when you say that you would like to die and end all this pain, or just go home to your sister’s, your brother’s, your dad’s or your mom’s. And then, there is the realization that this is your home! That this suffering is part of our life for now! That any happines we may have in the future will only be complete because of what we are going through now.

So, I ask myself: is there a limit to how much you can love? Is there a limit to how far I will love? Does love have a limit or an end?

I think the apostle Paul already answer this question:

The Way of Love (1Corinthians 13)

If I speak with human eloquence and angelic ecstasy but don't love, I'm nothing but the creaking of a rusty gate. If I speak God's Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, "Jump," and it jumps, but I don't love, I'm nothing. If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don't love, I've gotten nowhere. So, no matter what I say, what I believe, and what I do, I'm bankrupt without love.

Love never gives up.
Love cares more for others than for self.
Love doesn't want what it doesn't have.
Love doesn't strut,
Doesn't have a swelled head,
Doesn't force itself on others,
Isn't always "me first,"
Doesn't fly off the handle,
Doesn't keep score of the sins of others,
Doesn't revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.

Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be cancelled.

-Fede

360

2007-02-05T20:17:00.000-05:00

Dear Jan:

Professional coaches say that a sure way of knowing how we are doing is by carrying out a 360 degree audit. This means, you have to evaluate your performance through your own eyes, the eyes of your supervisors, the eyes of those you supervise, and the eyes of those you serve. This is a view of yourself in a 360 degree perspective. I have to say that few come out of these exercises with flying colours.

You have been coming back to life in the past 360 days. And you are pssing with flying colours most expectations and prognosis.

Drop a line to Jan!

2007-01-02T20:28:00.000-05:00

Happy New Year to each and everyone!

Would you drop a line to Jan next time you read this blog?
It will tell Jan that although she is not seen around often, you still think of her a lot.

If you wish to send her an email use her new address:

janitawalton@gmail.com

FC

PS: Ah! don't foget to write your email or phone number -if they have changed- for her new address book.

New year, new light

2006-12-31T23:12:00.000-05:00

Dear Jan,

We have lived a year full of danger and challenge together and we choose to believe that we are better now than last year. We know more about the paradoxical nature of life: we have been soaked in pain, near death, doubt, speechlessness, and dark valleys, yet, it has been there that we have experienced first hand, selfless love, iridescent light, endless grace, strong support, tender comfort, unshakable faith, and most paradoxically, the presence of God in a way we haven't experienced before.

You have seen death face to face. You were technically death for ten days had it not been for a respirator machine that kept you going, yet, in the very edge of life, we were confronted with our most basic beliefs, with our most fundamental hopes; our most basic relationships were tested. And now we know that the beauty of life resides in the vast array of relationships we have, most importantly, in the type of relationship we have with God and with ourselves. We know that pain, loss, sadness, anger and even death are very much an integral part of life. That without them we would not understand joy or peace, or love, or the essential lightness of being alive.

At times, we have been weak, without any strength left to continue or any hope to look up and see the light, and yet, it was in the recognition of our weakness that we found strength in God. When we couldn't hope or take the next step, others did the believing and the walking. When we did not have the strength to reach out, the Master reached out himself and touched us in a thousand ways. We learned that this strength is born inside of us when we have internalized our faith in him and let it bond with each cell of our selves, letting the Creator live in us and through us. We learned that the strength to live life fully comes from both, the inside and the outside, that the myth of superman or superwoman are just that: a myth. We found out an endless source of strength and hope in our community. We learned that we are only as strong as our links with them and our link with God.

You lost your capacity to speak, to sing, to write, to read. You lost your most fundamental tools to be a teacher. It took you six months to be able to read at second grade level, four months to be able to walk like a toddler, eight months to be able to ride in the subway by yourself. Nevertheless, it was in this time without words when family and commmunity wrote and spoke with words of granite the language of love. Now, almost eleven months after your aneurysm, you are gaining up on the aphasia, your vocabulary is larger, your energy is higher, your memory is improving, dozens, maybe hundreds of people have reached out and touched our lives in such a way that the temporary losses you have pale compared to the lessons of practical love you have received.

We could see the ending year as a half empty glass and cry over the lost opportunities, lost income, lost time, lost conversations; but we choose to see it as a glass that is being filled, we choose to be glad for the lessons learned, the love poured, the light shared, the help received. This is how we want to name life, to speak out its goodness, to be happy with the circumstances that instead of becoming prisons, can serve us as a step to see higher and farther.

We know that the Master was every step of the way with us through this year, and that we can count with his presence during the next year as well, we know this from experience. We choose to finish the year knowing rather than doubting, hoping rather than despairing, thanking rather than badmouthing. We choose to look forward to getting more light, more love, more joy so we can share all of them more with a world that is getting too dark.

-FC

A note from Jan:

During 2006, I confirmed that the most important thing for me is to be in relationship with God, to walk with him hand in hand. God comes to us and gives himself to us. We give our lives helping others but still the most important thing in my life is God himself. He has helped me get through all the challenges I had to face. For this I am thankful. I love you all.

A Christmas note

2006-12-19T12:12:00.000-05:00

Christmas is the time we celebrate the light. Life has become dark because of our collective selfishness. The Creator saw the darkness up close and decided to help us bring the light back again. One day, he decided to come in the form of a little boy and live with us, eat with us, feel cold and hungry and sad like us. Because of the birth of this little boy named Jesus, the light can be lit again in everyone's hearts. We have decided to lit the light and let it shine. It is this light that guided Jan from death's dark edge in a comma back to life. It is this light that keeps Jan's hopes high. In this light I find strength to believe in Jan's healing day by day.

It doesn't matter if you believe in this light the same way we do. Light is light. This Christmas we invite you to join us in the celebration of all that his light represents, believe with us that goodness, peace, joy and love can shine in everyone's hearts if we would give it a chance, believe that we can love one another. Then we would have a world full of light and love.

Thank you for all you do for us and all you are to us.

Many blessings this Christmas

Fede and Jan
Christmas 2006

Awakening

2006-12-19T11:50:00.000-05:00

Dear Jan:

Last week was a mix of welcomed changes and some of the old stuff. You began the alternative treatment and almost at the same time you began experiencing some pain. We were told this is supposed to be part of the healing process, those connecting neuropaths in your body are reacting as they come together.

Yesterday morning, you picked up the phone and went on to have a perfect conversation with no hesitation or words missing. It was no more than 4 or 5 minutes, but at the end of the call you came to where I was shaving, looked at me wide-eyed and said: "what did just happen?", you knew that something was different, that you had talked just as you did a year ago.

When you tried to explain you feelings about this, you began hesitating again and the aphasia showed its face again. For a few minutes you had a wonderful awakening of your speech function, and it felt so good that you could not stop laughing for a while.

Later that day we told the doctor what had happened and he shared in the enthusiasm. He said, he was expecting these awakenings to start happening but not this soon. So he was pleased.

But as the light has to share the day with the darkness, your day ended in a bit of pain and extreme fatigue. It is as if your energy bucket would just last you for a few hours and then, suddenly your body just shuts down. Before the aneurysm, you lived fast; what you have to face today is a universe apart, but you have been patient and continue walking by faith. For you it is not a matter of if, but of when you will be able to go through a day just like before: full of energy and joy.

Just like the eagle you are, one day you will soar again. Today, your brief awakening calls for a celebration.

-Fede

Jan on Friday - looking good!

2006-12-11T18:28:00.000-05:00

Hi all. It's brother Steve here. Jan and Fede were over for a very pleasant visit on Friday. Here's how Jan looked. Fantastic, right?

Wish list

2006-12-09T17:18:00.000-05:00

Dear Jan:

By now most of your students have already prepared their wish list for Christmas. They have edited it many times and included their most special hopes and toys. For more than 20 years you have been a teacher and love this season. Anyone who has visited your home during this season surely remembers the hundreds of decorations platered on the walls, windows, doors, ceilings and any ohter place where you could hang something to express your desire to celebrate.

Everyone has a wish list even if it is secret. This year, what is in your wish list? When I asked you the question, your answer was simply: I don't have a wish list for this year. But I know some of your wishes even if there is no list:

-to get your speech back (be healed from aphasia)
-to get your strength back (be healed from chronic fatigue)
-to get your right side fully reconnected (be healed from right neglect)
-and when you are well, to get clarity about your next mission impossible

-Fede

Re-joyce

2006-12-08T14:44:00.000-05:00

Dear Jan:

This season invites everyone to meditate in what this year has brought to our lives, all of it, the good, the bad and the neutral; to count your blessings and be thankful. Some songs say it is a season to be jolly; for some the season if full of sad or painful memories, in particular those who have lost someone dear; for others, this is just another season of shopping to calm their own guilt, or buy influence or affection.

What did this year brought for you?

You had a massive brain haemorrhage in early February
As a result, for months you lost functioning of the right half of your body, your ability to speak, to read and to write; you spent four months in hospital; you continue to be an out-patient in a rehab hospital
You suffer from right neglect, fatigue syndrome, you are under a medication with nasty side effects, your short term memory comes and goes, you have aphasia \
You lost six months of teaching, you experience generalized pain and most of the time are freezing even when the thermostat is set to 25 Cº,

How can you be jolly or thankful under these circumstances? It would seem that of all people, you are fully justified to complain against life. Nonetheless, in the mate paint of everyday life, I see your thankful heart clearly. Like a femenine version of Job you quietly say: God gives and God takes away, blessed be His name.

Where do you draw the strength to keep things in perspective and know the big picture? It comes from this deep sense of identity that you draw from your faith. You know who you are. You know that you are not what your mind tells you, but what God tells you. And for that you can be thankful. Thankfulness and joy are connected somehow, and you not only know the connection but fully live it! It is a strong statement of the values from which you live, two of which are: that you are not your circumstances, and that God knows what this is all about.

I asked you a few weeks ago what did you see in your life during the past few months? your response revealed crystal clear what you believe. You said:

“I see God allowing this for me to learn more trust in Him, more freedom from the obvious, more reliance on my partner, that my happiness in not based on my circumstances, that all this works for the best in a mysterious way”

I totally agree. I don’t experience suffering in my body, however, walking along your path has been on occasion very painful, and yet, somehow in the darkest moments, when I feel that I am at the end of my rope, there is light! , there is that ray of hope that brings us always into the open and remind us that we are more than this pain, that we are better for the suffering experienced, that maybe we are a bit more human for it, more understanding of those who suffer. So, we cough out the pain and rejoice.

Yeah! Let’s rejoice and laugh even when tears are rolling down our eyes. Our life is good with everything and everyone in it! Thanks be to God.

FC

More love

2006-12-05T23:49:00.000-05:00

THANKS!

Thanks again for the endless love from the Runnymede church community. Last Sunday we got another cheque for $2500 for Jan's rehab and Orest just delivered tonight another $300 from two loving individuals more. We are left speechless, so we tell all of you with our hearts a million thanks! May the Lord bless us in the future so we can also bless others the way you have blessed us.

*****

Jan is getting ready to start the next phase of her rehab. She will be going to the new therapies twice a week starting this week. She is really exicted about this.

She is also feeling a lot better after the doctor agreed to reduce her medication to 50% after warning her of the risks. But Jan is no stranger to taking risks and she would not shy away of risks if the result is an improved quality of life. Please pray that the new dosage is sufficient to keep her from having more seizures and that eventually she may be free from this medication.

Fede and Jan

All things occur perfectly

2006-12-05T17:25:00.000-05:00

I found this note in Phil and Lori's website very inspiring and I wanted to share it with all of our friends. Phil and Lori are very special people in Jan's life. See also the note on Jan in their newsletter. Follow the link below.

All Things Occur Perfectly

Like all people, Lori and I have many faith-based positions – mindsets for which there is no proof as to their validity, at least not at the time I adopted them.

None is more strongly held by Lori and me than the mindset that all things occur perfectly. Both of us say it often to ourselves and in courses. Recently a graduate wrote and asked what it means to us.

At the foundation of this belief are a number of other faith-based positions.

• I have choice. I have choice about how I spend myself and how I think and feel about my life.
• I am the source of my results. They are the product of my net intention – the combination of my conscious and unconscious intention.
• I am served by every one of my results, whether I know it or not. That is to say, I have a lot of intention of which I am not consciously aware; intention that has to do with, for example, my physical and emotional safety and wellbeing.

If I do not practice these ideas, there is little chance I will experience the perfection of life, and no chance that I will experience the perfection of life as it occurs.Sometimes I pretend I don't have choice. Usually it is when I am unwilling to pay the prices that I make up are attached to my options. When this happens, I don't think about how perfectly life is unfolding, I just slog along thinking others are in control of my life. Ugh!

Sometimes I produce results that I don’t like. I pretend that I am not the source of them, primarily because I am not aware of my net intention that produced them and I do not understand how they serve me. When this happens, I don't think about how perfectly life unfolds, I just slog along blaming and find fault with others about my life. Ugh, again!

Later, sometimes much later, I end up thinking; “I now understand how that was perfect, given where I am in life now.” I experience the idea that all roads lead to where I stand.

The trick is to connect with the perfection of what I am attracting in the moment of the attraction.

This is a faith-based position. It is a matter of choice. The more I choose it and operate from this position, the truer it becomes.

Most people do not adopt it at all. They spend a lot of time in resistance to their results (the truth about the way things are in their lives), feeling victimized, angry and self-critical. About their results and their lives, they think, "This sucks."

Of course, it is my resistance, victimization, anger and self-criticism that feed and perpetuate the results that I do not like. These are the thoughts and emotions that mask the perfection of all things as they occur.

So there is no misunderstanding, Lori and I do not believe that operating from this position justifies consciously acting in ways that violate our values, giving less than our best, treating people unkindly or abdicating ownership for doing what we believe adds the most value.

We encourage you to live up to your greatness, with more commitment, courage, character and faith than you ever imagined, while remaining compassionate with yourself and others.

We believe that, although you may not fully appreciate what a gift you and your current situation are NOW, someday you will be clearer. Be excited about NOW and the opportunity to create a world with even more possibility for you and your people will become apparent to you.

by Phil and Lori
Extraordinary Learning 21st leadership now
http://extraordinarylearning.com/newsletters/2006/2006-1.html

RUNNYMEDE UC

2006-11-27T14:54:00.000-05:00

A very special word of appreciation for the generosity of a group of anonymous donors from our community at Runnymede UC that collected $1050 for Jan's rehab. You are a concrete expression of the Kingdom and make life very beautiful with your love. You make our Father proud and make us feel embraced by a thousand arms.

We will always treasure the imprints you have left in our hearts and in our lives.

Fede and Jan

Feeling and healing

2006-11-27T14:39:00.000-05:00

Dear Jan:

Last night you couldn't make it to the Sunday Night gathering. Your heart wanted to attend but your body just refused to cooperate. Being forced to sleep just highlighted the frustrating slow pace of healing and its side effects. How can you find some satisfaction in your everyday life when the choice is forced on you to stay and sleep instead of doing something fulfilling with your community? It seems that you have to subordinate even the simplest desires of your heart to the healing imperative, and everyone who knows how independent you are, also knows that this proposition won't work for you. You face a real quandary.

In this sticky situation, you are being pulled in many more directions. On the one hand, your healing implies staying with medication just to avoid more seizures which could cause more damage, the drawback is the drowsiness it causes, "my eyes want to stay closed all the time, my body does not want to stay awake, I sound and look dumb when I am not..." you say again and again. The process of healing looks as if it is a slow awakening to what life might be.

On the other hand, your emotions are very much on the surface of almost every interaction you haven: you cry when you can’t get your thoughts out, when movements are too fast, when you can’t remember where you left something, when the voices sound too loud, when the world just don’t seems to be the same, and there is little to laugh about, you sob, “this isn't life, it would be better just to go to sleep for good..." Some days disappointment and discouragement are so big that they look like the only option in the horizon is to push the stop button.

On the other hand, there is the resilient Jan we know that keeps walking tall and maintains faith high, this is the Jan that wants to think in the long term to keep things in perspective, this is the one that asks: “what is the lesson I need to learn from this? What is what I need to see in the middle of these circumstances? How can I internalize that God’s time is not my time? How can I live the fact that I am not my circumstances?” The inconveniences of the healing process are insignificant compared to the new lease on life you have been given and the new vision you have about pain, illness, suffering and life.

On the other hand, we know that we have each other and that one day we will look back and say: “Where did we get the strength to walk this far? Where did all these footprints on the way come from? How many people were walking alongside all the way?"

-Fede

2 lessons from pain

2006-11-25T23:53:00.000-05:00

Dear Jan:

You are very familiar with pain. You wake up with pain, you take your breakfast and the medication reminds you of pain, you go through the motions of the day and the constant presence of a dull pain forces you to cry, to slow down, to struggle with the movements of life. I am surprised of how valiantly you set aside this pain and sometimes enjoy life.

Many people have discussed the nature or the reason of pain. Take for example the book of Job from the Bible where the reason for pain is a bet between God and the devil; or take any article from an American newspaper where you can see that the main reason for their fear is the pain they remember from 9/11.

Pain, fear, dissapointment, sadness. If we go beyond trying to assign guilt, we are left with a question about what is the purpose of this pain in your life? How are we supposed to understand the tremendous disruption of our lives as a result of the aneurysm? And, I don't mean only the physical pain, because there is a sustantial emotional and spiritual pain that has been part of our lives.

I read a dozen books on pain in life. But this does not alleviate the experience of pain, it just provides a framework to answer the big questions. The irony is that it is the small questions, the constant dull pain, is what breaks the soul and the resilience.

A poet said that love and pain are the two wings of life. Lesson one is that you can't have one without the other.

Lesson two, is that however despicable and horrendous is the experience of pain, it can produce a beautiful character or a bitter attitude.

How paradoxical!

-Fede

Fotos

2006-11-19T12:18:00.000-05:00

Dear Jan:

Here is another picture from the dance:

We went to Lindsay on Friday to make some minor improvements to the kitchen. It was a long day for you. at the end your body was just refusing to even walk from the car to the apartment. It is so easy to forget that your energy sets imposes sharp limits to your working time. The house is not selling, so we will have to re-list it with a new price. I wonder what the lesson is about the house. You said,"wouldn't it be nice if we lived here and you commuted to work?" but we both know that the cost is too high.

Yesterday we decided to finish a project started before the aneurysm: to complete the upholstering of two old arm chairs. You were having fun choosing fabrics and directing the work. We'll see the results...

-Fede

A note from Angela

2006-11-16T23:38:00.000-05:00

Hello Everyone

This is Angela (Jan’s cousin). Wasn’t that a party!!!

On Sunday my husband Barry and I had lunch with Jan & Fede. We went down to deliver the proceeds from last weekend. Jan was thrilled with the results and so were we. Together with the help of so many people we raised $4558.23 so far. I say so far because there is still money coming in.

If you didn’t get a chance to donate and would still like to, please mail cheques payable to:
Janice M. Walton de Carrillo
c/o 80 North Heigts Road,
Toronto, ON M9B 2T8

This would not have been possible without so much help from friends and family. Jan has some great friends and I feel privileged to have worked with them on this dance. Orest you have the biggest heart in the world. I could not possibly name all the people who gave so freely of themselves. Jan, you are truly blessed to have so many people who love you. Kate I will never forget you!

I must say that I am proud to be a “Walton”. We don’t see each other near as often as we should but when this family was called upon we were all there supporting each other. Thank you so much to my fellow Walton’s. A special thank you to my sister Tina and her family, couldn’t have done it without you. A special thanks also goes out to my precious mother, Lil, you worked tirelessly as usual and gave so much of yourself.

To every person who donated items, donated time, and donated money, thank you so much for your generosity. Money is necessary in this world, that is a reality, but the most important thing in life is Love. More than anything I wanted Jan to feel loved. I believe that she was overwhelmed with Love. You are all responsible for that, Thank you!

-Angela

9 months after an aneurysm

2006-11-16T23:10:00.000-05:00

Dear Jan:

This week is nine months since an aneurysm ruptured in your brain, destroying with a massive bleeding the language centre, and later reaching the back cavity affecting the short term memory. After two operations in two days the medical team gave us a bleak description of where you were. They said that you probably had lost your first language, that probably you would be hemiplegic, for the rest of your life. They didn't know the type of person you are...

It's been seven months since you were transfered from the hospital where you were operated to a rehabilitation hospital where they began the long process of reconstructing language, intentional thinking and movement in your right side. It's been five months since you were sent home to continue SLT, OT and PT as an out-patient in the same hospital.

Earlier today we run into a former co-worker at a store. She was very surprised to see you so slim and to hear your story. She mentioned that one of her cousins, 31 years old, died of an aneurysm last year, in her eyes, you are a walking miracle because you are doing so well in such a short time:
-you have recovered more than 70% of movement in your right side, you can eat, write and hold things with your right hand and your right leg functions at 80% of its capacity.
-your language skills are far better than what they were four months ago, your capacity to recall words is doubling every month and your pronunciation and grammar are improving substantially. In a good day your language is at 75%.

Your rehab program will come to a close in the next couple of weeks. Now, you will have to continue on your own. So far you have demonstrated a lot of resilience and determination to get where you are. You have been already in conversations with health professionals that will guide you in your search for applications of glucoscience to your recovery. They told us a while back that these treatment is costly and not covered by the provincial health insurance paid for by our tax dollars. That is why the fundraiser was so important for you. The aprox. $4,600 collected will go towards that treatment. It is moving to see so many people giving freely and lovingly to help you in your recovery.

On the down side, you have had a lot of trouble with the side effects of medication to control the seizures that were caused by the operation when your bone plates where replaced in June. Dizziness, depression, irritability and who knows what else these drugs cause in your body are tough challenges to face. Add to that the expected fatigue that is part of the healing process and you have a lot of aggravation and frustration for feeling drugged up all day. You will have to flex the muscle of your faith so that the seizures stop all together and the fatigue grows smaller until it dissapears sooner.

You have come a long way! Many people have been with you shoulder to shoulder all the way. Keep up the good fight to get back all of the functions affected.

For what is worth, we send you our love,

-Fede

Family

2006-11-13T23:20:00.000-05:00

Dear Jan:

You are really struggling with the medication this week. Fatigue, drowsiness, trouble sleeping, but perhaps the most difficult is the effect on your emotions. The whole week was a roller coaster of times of relative tranquility and many bouts of depression. On Sunday, Angela got a glimpse of this change when you told her that it was not worth going living like this, with these effects. I wish there was a way of getting rid of those effects because there are not many other options that you and the doctor have not explored.

On a positive note, I am absolutely impressed with Angela’s loyalty. Single-handedly she organized with Tina the whole event 110 Kms. away! And brought to you the results of the event! Bless her heart! They are the best cousins on this hemisphere!!! (hmmmmm…) I wonder if this could be developed into a lease a cousin operation for those who don’t have a cousin like Angela or Tina. Louise and Sue were also really involved and then all the spouses, children, friends and even neighbors. You have expressed your gratitude to them already, but I take any opportunity to acknowledge their practical love for you. If they read these lines: Many thanks, adoptive cousins and sisters in law. You made the world a better place with your act of generosity. I hope you continue practicing random acts of generosity because that is the only way we have to save the planet.

-Fede

One step back

2006-11-07T18:27:00.000-05:00

After a month of bliss without any medication, Jan had a seizure this morning and we ended up in the ER the whole day. That place is not our favourite one! She was kept under observation and given medication which made her very dizzy. She slept most of the day amidst the noise and chaos of nurses, paramedics and doctors running around patching up broken people. She went to bed as soon as we got home. This may mean the Doctor will put her back on medication. You win some battles, you lose some. The Master knows why this is happening. We are thankful for what she has now and look forward with hope and conviction.

FC