Professional and Survivor Views on Brain Injury

By John W. Richards

How did this brain injury thing ever happen, anyway?

I never before had an injury that I couldn’t remember. Yet this injury is different, so different in so many ways.

My wife and family and friends piece the story together for me later, when I am in the hospital. The more of it that comes out, the happier I am that I don’t remember it. As a past president of the Brain Injury Association of New Hampshire, I know all the safety rules. Yes, I did have my bicycle helmet on. Yes, I had biked that road at least fifty times over the past five years. Somehow, for some unknown reason, on August 8th, 2000, I got found lying face down, unconscious in the middle of the very same road. Why? Was it a traumatic brain injury or an acquired? No one knows, not even the high powered doctors in Boston.

All I know is that I woke up in what is nicely called a “veil bed.” To me, it was more like a prison – I couldn’t get out and they didn’t let me walk around. I call my mother one night and plead with her to come get me out of there, to no avail. Later, I piece together that if I had been allowed to walk around, I probably would have fallen flat on my face. I devised an intricate plan to escape by driving an electric wheelchair out the front door and up the main superhighway in NH…. did it work? Well, somehow the rehab people were wise to me…..

So what about rehab?

I try to be “good,” and do what I am asked in the hopes that that will speed me on my way out of there. Yet day after day goes by. I feel like the same person with the same personality; so why do people talk differently to me – like I am either a different person or that I don’t now understand what they are saying or doing?

Speech therapy proves to be the most difficult for me. I tell them I just want to go back to work, what is so strange about that? And then the speech person has me do stuff I can’t see the point of, like write in the day planner she gives me. What am I supposed to write, and why does she ask me to do this? I have been filling out calendars for twenty years and haven’t forgotten how.

Then she critiques my penmanship, which was never that great in the first place. Is it that much worse? My self-esteem has taken a pounding in all this. I go home to show my new penmanship to my mom. She says my penmanship always was lousy and the brain injury hasn’t made it any better.

I wonder: how do I come back from this?

Am I really so much different? I don’t know for sure. Some people treat me differently and others treat me the same and give me honest feedback when they think it is needed.

One rehab therapist tells me I shouldn’t use yellow sticky notes, as they may be confusing to us survivor types. I don’t understand this at all, as sticky notes have always been helpful organizational tools; they are not confusing for me, but is that my brain injury preventing me from seeing the wisdom of this statement? If so, I don’t get it.

Prior to my injury, I was the president of a human services firm. My company treats me well. A good friend and colleague there truly extends herself to help me figure out what “coming back to work” really entails. In my lengthy absence, the company naturally restructures, so other people are now doing what was my job. All I want is to be “cured,” whatever that may mean.

My insurance company has that figured out much better than I do. One hundred days of rehab and then they declare me cured, whether I am or not. That is so much simpler and so clear-cut: just do your one hundred days and then you are all better. If only it were so simple.

So now I am left not only with “cure” questions, but theology and philosophy creep their difficult ways in. What does this whole experience mean and what does it say about what I should do with my life? What is the end of this story?

Well, here it is, unsatisfying though it may be.

Like so many other people who have been down this road, I don’t know. The answers, unlike they seemed to be five years ago, are not so clear. I am forced to reevaluate all those nasty questions, like what to do with my time and energy and my life. How can I help others who have been down this road? Is there a way I can make rehab a better place, help people pull their lives together after that terrible day when everything is suddenly different?

I wind up thinking I am going to just have to grow into all these answers. In the meantime, it is, as they say, one day at a time. I must live each moment and do the best I can. If anyone out there knows the answers, please send me a letter c/o the BIANH at 109 N State St, Ste 2, Concord, NH 03301 or email to mail@bianh.org