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
Wednesday, November 05, 2008
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
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
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
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
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