To put it mildly . . . others do not experience the admission of a brain injury as just an engineering problem.
I am not sure what to do about that.
This photo is not that far off the mark at times.
The other day when walking onto the ferry with homebound commuters a friend asked me what I was up to these days. I decided to be honest and said that I was coming back from a day of appointments because I am working to heal a brain injury. We were going up the steps at this point and sat down in one of the benched units together with another friend. Steve looked like he wanted to be anywhere else but there. He looked frightened and uncomfortable.
Fear and discomfort is not an uncommon reaction when one reveals that they have a brain injury. In fact, a friend who has had the same experience repeatedly when he has admitted to his brain injury and handicap is the one who coined the title here: "You gotta knife too?".
Brain injuries are so misunderstood! I look normal. I talk normal. Therefore nothing must be wrong, right? And then if I do admit to it I get treated as if I have suddenly sprouted a second head behind my left ear!! Or, more correctly, I get treated as if brain injuries are highly contagious and the person is frightened they will catch it.
I am not sure of what all goes into that response. I think people in general are afraid of and uncomfortable about any kind of physical handicap. I am not sure if the fear on people's face is that they are afraid I will do something weird and they will be embarrassed and not know how to deal with it, or if the fear is that they don't want to admit my injury because they so much never want it to happen to them. I think another possibility is that people fear mental illness and lump TBIs in there too.
Even with friends and family who sort of understand there are still problems. They "get" that I have a brain injury but are very impatient with me if I display any symptoms. They do not realize my behavior is a symptom of my brain injury. They just think I am being slow to lay down a playing card, or I missed a tea date because I was self absorbed and did not care enough to make sure I made it.
I went to a family reunion over July 4th weekend that was in many ways a nightmare for me. First off, it never occurred to me that I would have difficulty with the crush of people. There were 51 of us at the reunion. I come from a quiet world of living alone on a quiet rural island. Being closely packed in with 50 other people was a big change and very overwhelming. When I am overwhelmed the brain fatigue gets equally overwhelming and I have an increase in headaches.
Secondly, one cousin was in charge . . . and when she is in charge she is IN CHARGE! She did a fantastic job of running the details of the reunion. But oh, she was downright cruel in terms of how she dealt with me in relation to the brain injury! In fact, my cousin strongly implied that I was making it all up.
The whole thing was very painful for me because I was struggling and then being put down for struggling! Thankfully, we are not having another reunion for 3 years. Hopefully I will have healed more by then or/and have more coping skills. It was pretty awful this time around.
What a conundrum!! In so many ways too!
I want to appear normal and I want people to treat me normal and yet I also need people who are close to me (or in control of a situation) to understand my limitations and needs.
I want to appear normal and have people treat me normal, but I would also like to be able to share about my life and not have to hide the TBI as if it was a dirty little secret. I tried to be normal for 6 years; not letting on that I was having trouble. All that got me was bankrupt! I want to be able to be me. To be able to be all of me which includes the vulnerability.
Another conundrum is that the brain controls every aspect of who we are as a person. Therefore, unless the symptoms are major such as loss of speech or movement, the other symptoms are things that happen to everyone only more so.
Yes, for me I am looking at this as an engineering problem. My brain is what it is and I have to deal with it. But for other people my brain injury is an emotional problem. Somehow the idea of a brain injury hooks people on some emotional basis. I think that is why there is fear, anger, denial, and whatever else is in that mix.