Note: I am Thomas’s dad. I have been a disability advocate for obvious reasons and in April of 2012 I became a self-advocate. For those who do not recognize the term, that means I became a person with a disability.
I am a person with a disability. I do not wear a sign or have a label on my forehead saying “Disabled”. Although I do have a couple of t-shirts that say “Part of My Brain Died What Is Your Excuse.”
My disability is not readily visible. In April of 2012 I suffered a major stoke. I am a stroke survivor. For a time I was physically disabled. However, with hard work and therapy I was able to regain the majority of my physical abilities.
One side of my body is weaker than the other. This in spite of exercising. I have pain in some of my joints. I walk with a bit of a lilt at times, especially if I am tired. One of my favorite side effects is that, if I bend over to tie my shoes there is a good chance I will fall over.
All of these are minor inconveniences. If this were the sum total of the lasting effects of my stroke, I doubt that I would be classified as disabled.
Understand that part of my brain died. A large part? I can not say if it is a large part or not. However, consider that loosing any part of the computer that runs your body is not good. A scan of my brain shows a number of areas of white spots, some large and some small. These white spots represent brain cells that are dead.
That is why I had the t-shirts made up, “Part of My Brain Died What Is Your Excuse.” Realize, I do not use dead brain cells as an excuse for my behaviors, opinions or actions. But they are dead nonetheless.
Recovering brain function was much more difficult than recovering physical function. It is possible to exercise the brain, but it is not nearly as easy as exercising the body. And the results are not as significant, or at least not as significant in my case.
Every brain injury is unique. My experiences are not the same of another stoke survivor, even a stroke survivor of similar age.
As I sit here and write this, one of my brain issues becomes very apparent. I have been a writer most of my life. I made my living putting words on paper for many years. My writing includes corporate work, magazine articles and at one time I had a weekly column in one of our local newspapers.
Writing came naturally, or I should say, writing use to come naturally. Now I struggle to put words on paper. They no longer flow from my fingers without effort. The muse in my head no longer directs me or tells me what to say.
Each paragraph, sentence and word is work. That is such a new experience for me. Writing should not be work; it is supposed to be fun.
However, I still write. I still have the urge to put words on paper. I still have stories that need to be told and ideas that need to be shared.
My struggle with writing is just one of many brain issues. My memory, especially short term, is terrible. Yes, even more terrible than most males. I have trouble focusing on tasks. Numbers no longer look and act like poetry for me, math is now math.
There are other issues as well. Some are private and are I choose not to share them publicly, not even on this blog.
Taken individually, my struggles or problems may not seem significant. Maybe even taken as a whole they do not seem significant. However, they have significantly impacted my life.
I have been told by acquaintances, I know now that were not friends, “Howard, I know you had a stroke. But you are not really disabled. Not like someone with Autism, or Downs Syndrome or Cerebral Palsy.”
Yes I know I am not disabled like someone with Autism, or Downs Syndrome or Cerebral Palsy. On the other hand they are not disabled like I am.
My disability is invisible. You can not see it and you have no idea what is going on inside my head. Until you do, until you can understand what it is like to be me, then do not judge and do not criticize, and more importantly keep your comments to yourself.
