Caregiving as healing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.


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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

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

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