A Place to Share
You might be wondering how could a paralyzed person, who can not communicate well, write a story. I can move a tiny muscle in my hand and a special switch converts electrical signals from my brain into something a computer can understand. With a program running that takes the place of a keyboard and mouse I run everyday software like Windows and Word. The biggest adjustment I have had to make is to develop the patience to accomplish anything very, very, very, very, very, very, very, very, very slowly. My mother worked with computers and keeps everything working. Todayís software and computers amaze me. Because of advances in technology I am alive today with some hope of recovery. Did I make the point that communication is painfully slow? Good. If you remember anything about people who can not communicate normally, remember that you may be uncomfortable for a few minutes, but you get to soon leave the uncomfortable situation. People in my condition are certain of nothing.
So you might be wondering, ďHow would my life change in a similar situation? ď I didnít fare too well. For many different reasons I am now single (was married before the stroke) and living in a nursing home. Oh, I forgot to mention that the stroke also left me legally blind. I do not always remember unimportant (to me) things since the stroke (I am lucky I donít have car keys), though I have retained many skills formerly known as verbal (I know that there is a ďPrinceď joke in that). Anyway, most of my brain damage is in the lower brain and the thinking part of the brain is mostly intact.
During the stroke I also lost the ability to control my breathing. Being near water terrifies me. Pretty strange for a guy that owned a sailboat. I also donít sweat. At least not enough to form a drop of sweat. At least I never want to wipe my brow. That covers it!
Honestly, my only hope of anything close to a normal existence lies totally out of my control. Research and studies are being attempted monthly that could change my life. The most promising research injects cells into the damaged part of the brain and allows the brain to repair itself. I am hopeful a remedy will be found.
As I said, I now live in a nursing home and am just passing time. I am relatively lucky to get any visitors. As you can imagine visits are awkward since most people canít communicate with me. E-mail works well because I can set the speed of information exchange. When things get too fast for me I shut down. When I shut down I simply refuse to receive or process information. If I had not had a stroke you would think I was just being difficult, whatís left of my brain is just protecting itself.
The name doctors give my condition is ď locked in:Ē syndrome. This is a good description. Fortunately, I donít mind the company in here. No, we are not going schizophrenic! Seriously, I am mostly isolated and I escape the isolation by getting on the Internet or watching a video. Interacting with people is really just done as needed. I have not had a casual conversation in many years.
I think the thing I miss most about my old life is just being part of everyday life. Now, even the experience of taking out the trash sounds exciting. Yes, time is making me odd!
I am doing much better than most nursing home residents. I am able to e-mail friends and family, FAX my Doctor, and get on the Internet. This gives a paralyzed person a lot of options. I have e-mailed Bill Clinton, George Bush, and most people in the news. This gives a guy who can not move a lot of perceived power.
For now all I can do is stay in as good shape, both mentally and physically, as possible. I get physical therapy daily to keep my body in fairly good shape (I have not moved in any purposeful way for ten years). As for my mental health, I have stopped watching soap operas all day and gotten on the Internet. At least I use my brain a little. I beg your forgiveness Luke and Laura.
There are probably many people in my situation. I am sure the Titanic passengers left alive after the collision with the iceberg, treading water, becoming tired, felt like I do. My destiny is not in my control.