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