The cupboard you opened this morning could have been unreachable. The zipper on your coat could have been impossible. The stairs outside of your door could have been insurmountable.
Every day in practice I work with people who, like you, wouldn’t have given these simple things a second thought – before their world was totally changed by a diagnosis.
For people with neurological disorders the ‘simple’ things in life are anything but. It is not just a daily struggle physically, but emotionally, mentally, and socially. They have good days and bad days like you and I, but their ‘good days’ are lived fighting a difficulty you and I have probably never faced.
I want to spend a day in their life.
A day in the life of Mark*, who was beaming when he came in yesterday because he was able to move his hand from one knee to the other. Mark is a stroke victim; his life is forever changed because in one unexpected moment, his brain was irreparably damaged.
A day in the life of Jill, who has just re-learned how to tie her robe, undoubtedly something she has done her whole life.
A day in the life of Daniel, who was diagnosed with Parkinson’s at the cruelly young age of 33. Who, while once extremely active and fit, now has a severe tremor and finds it difficult to raise his hands above his head.
I want insight into not just their physical conditions, but also the emotional ramifications.
I have dealt with some issues with my ankles for the past 5 years. Last year I had (for the second time) reconstructive surgery on both ankles, at the same time. I could not put weight on either foot for 6 weeks. I spent a several months in a wheelchair. I believe this experience has, in a small way, shown me some of the difficulties these participants face every day. Once I was back on my feet, I appreciated simple things like opening doors, being able to reach sinks, not getting stuck in the snow, etc. A year and a half later, I don’t always appreciate these things, it’s just ‘normal’ again. Some things have stuck though; I still enjoy skipping, which I had to relearn after months of being unable to walk. I try to not let myself take these things for granted.
But I know I still don’t understand. And I know that, most likely, I never will. Sometimes in lectures we are given a task to complete, and then given a condition with which we must complete it. When I wake up at night and my arm or leg is numb I do a task the participants would be asked to do to try to understand what it might feel like for them. This morning I walked up my stairs with the symptoms of spastic cerebral palsy. I might never fully understand, but I will do everything I can to try.
There are many things I notice now, having been training for a few months, which I would not have noticed before. I hope that as I work beside persons affected by these conditions I will continually develop a better understanding so that I can celebrate their victories, fully appreciating what it means in their lives.
Something to think about
*These are actual participants, whose names have been changed for obvious reasons