Wednesday, December 31, 2008

New Year's Eve

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

Tuesday, December 30, 2008

The Polar Express

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

Wednesday, December 24, 2008

No More Gloom!

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

Saturday, December 13, 2008

The gooder days and the badder days

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

Sunday, December 07, 2008

The effects of a seizure

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

Wednesday, November 05, 2008

Living with a brain injured person

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



Thursday, October 09, 2008

Seizure

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

Sunday, September 28, 2008

Adding the losses

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

Friday, September 19, 2008

The milestones

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

Saturday, September 13, 2008

Worth the wait

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

Tuesday, August 26, 2008

A different Jan? The same Jan?

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.

FC

Wednesday, August 20, 2008

The art of balance

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.

FC

Tuesday, August 12, 2008

Jan Un-ltd.

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

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

Monday, August 04, 2008

A word for Jan

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

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

Thursday, July 03, 2008

lines on the sand

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.

Sunday, March 16, 2008

the meaning of a pledge

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?

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?

Tuesday, February 26, 2008

There is no perfect drug just perfect life sentences

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

Wednesday, February 20, 2008

Needles and tonifiers

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

Monday, February 11, 2008

Two Years After the Aneurysm

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

Thursday, February 07, 2008

A story of a seizure

(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