Brain Injury Is: not being able to understand instructions so simple that "even a child could understand them"
Where is my cane? I need it so that when I walk people will believe that something is wrong with me! Where is the stutter when I speak, the bend in my back, or my wheelchair? These are all signs of disability, and if any of these were to be evident in my life, people might see me as a person with a disability.
Sometimes I think it would be easier if one of the above situations applied to me. As it is, not too many people who meet me for the first time believe there is something wrong with me. There is no stutter when I speak, and no faltering step when I walk; and I am very happy for that. I am not paralyzed in any way. My voice sounds strong to others, especially in the morning and afternoon right after my nap. All of this is a problem to me at times because people cannot see my hidden disabilities.
For fourteen years I had been taking medications for high blood pressure and I had the habit down pat, never skipping a dose-until my stroke, that is. Now I miss about 25 percent of the time in the morning. No one ever sees that. I used to bring money with me whenever I went shopping or went to some event, now I frequently forget. At one time, I was pretty good at organizing my day so that I was where I was suppose to be at the time I was to be there. Now I have been trained to remember these things by writing notes and sticking them all over my house. However, half of the time I still forget to write times and places down, much less look at my notes. No one knows that but me-and the people I forgot to see. They do not always view my forgetting as a memory problem. Many times they see it as an irresponsible act on my part and get angry.
There was a time in my life when following directions was quite simple. If the directions were written down, I had no problem. If someone gave them to me verbally, I could remember them. Now, however, following directions is almost impossible for me without constant reminding from the others around me. They cannot see that I have memory problems and am not stupid, as they might think. After all, the directions said that any child could put it together, but I could not.
I mean, what did Amy think when she saw me break an egg on the counter-top when that egg was suppose to be in the brownie mix that I had just put in the oven? What do you think that Lana thought when she saw me in her back yard without my pants on because I had just glued them onto the bottom of my boat? The staff at Courage Center did not laugh when I told them how I completely trashed my apartment when I started looking for something, then something else, then something else and then something else, never finding what I had originally been looking for. Never really finding anything at all, because I was too exhausted from tearing through things to remember what I had been looking for in the first place. That type of behavior never shows in my appearance nor in the way I walk or talk. Except for reading this, how would anyone ever know that this type of thing happens all the time?
When you are around me, what you see is not what you always get. My problems are mostly invisible. They are not apparent until you get to know me. For the most part, this non-recognition serves me well, as I can move around in society and few people will even know that anything is wrong. My problems start in the family or on the job or with people I associate with frequently. I am uncomfortable in these settings because people start to think I am stupid or weird.
A friend of mine lives in an apartment that caters to the elderly and persons with disabilities. She was shunned by the residents there for several years because her injury, a brain injury, was invisible. She talked well. She walked well. She was not physically impaired. She was not seen as a person with a disability. Several months ago she started using a cane because of a problem with dizziness. For the first time she is starting to get recognition from the other residents. She is now seen as a person with a disability and fits in with the rest of the residents.
What can I do to help you understand that I have a disability and that I am not just a little crazy?
The problems that are common to people with brain injuries are not easy to understand, and family members and friends do not always recognize these problems. It is a dilemma for those of us who have a brain-injury. The more we try to get on with our lives, the more we are looked at as strange by family or friends. I think all facilitators of programs dealing with mild to moderate brain injury should issue a cane to each client. That way, we clients will look as if we had a disability, not as someone who just acted a little strangely. A cane might not explain why I glued myself to my boat, but it might make coming up with a good excuse a lot easier.