I know you are probably trying to be sympathetic or relate to me in some way, but when you identify with what I am experiencing as a result of my brain injury, I do not feel heard. Often, when I tell someone that I cannot remember what I was doing five minutes ago, he or she will say, "Oh, that happens to me all the time." Or in response to the fact that I cannot remember the names of things or the word I am trying to say, I get, "Welcome to aging."
I can't tell when I am hungry or full because my brain does not receive the message my body is sending: "I know! Sometimes I just keep eating and eating."
I get lost in places that were once familiar: "Oh, I have the worst sense of direction."
I do not remember whether or not I have met someone: "I know. I am the worst with names."
Everyone has experienced the feeling of telling a personal story only to have someone turn the conversation around to that person because of a one-up story or even a totally unrelated story that your story brought to mind. Often it is in an attempt to relate but sometimes it undermines your experience or feels competitive. Take for example, Peggy and Alexis on the Real Housewives of Orange County. You know Alexis is insecure and has to make everything about her. Oh, I forgot what I was trying to say. "I hate when that happens."
Listen folks, I know we all share certain experiences and that is what makes us human. I want to give you the benefit of the doubt and not assume you are trying to say that because you experience the same thing, my brain injury is really not something unusual. When you say those things to me, I feel petty pointing out that all those things happened to me overnight. Not to mention that in combination with all my other symptoms, I now have a debilitating, chronic condition which prevents me from working. I can't imagine that you mean to undermine my experience with your comments.
Before I left work, I did and said so many things I wish I could take back. Early on, before I knew better than to try to be funny, I said something hurtful about a colleague. "Don't you want to come to the Christmas Party and watch ___ get drunk?" The teacher I was talking to was appalled and said that I was really mean. I quickly apologized and admitted that it was completely inappropriate. When I mentioned that one of the side effects of brain injury was difficulty reading social situations and impulsively saying the wrong thing, my colleague asked. "Don't you think you might be using that as an excuse?" An excuse? An excuse for what? The fact that I am actually an insensitive jerk? Yes, I am using it as an excuse. And as my doctor pointed out it is actually a legitimate excuse.
I wish I could compare TBI to some other disabling condition so you could understand how inappropriate your comments are! Would you tell someone with a prosthetic hand that you drop things all the time because you are really clumsy? Would you tell someone with agoraphobia that you also hate crowds? What about someone with diabetes, would you say that you too should really avoid sweets? Would you say that your vision is really getting bad now that you are older to a person who had just gone blind? No, all of those comments would be considered insensitive. Why then are the comments to a person with a TBI considered okay?
Let me tell you what I mean by getting lost so you can understand how different it is for me. I never had the best sense of direction but fortunately in Manhattan you do not need to have one to get around. It is a grid system so the street numbers go up as you go north, and the avenue numbers increase as you go west. Plus, I have lived here my entire life so I rarely thought about it before my surgery. Last Christmas season I met a friend at the Museum of Modern Art. I knew it was on 54th Street near Sixth Avenue but I wrote it down for myself just to be sure. I decided to get off the Seventh Avenue train at 50th not 59th because it was closer to the museum. I got off and started walking in what I thought was the right direction but when I had reached 47th Street I realized I was walking the wrong way so I turned around. When I got to 52nd Street, I thought I had gone to far so I turned around again. When I reached 50th Street again, I started to worry out a little. As soon as anxiety or frustration begin, my ability to problem solve or navigate decrease. The second time I saw 52nd Street I wanted to cry. It feels like someone is playing a trick on you and moving the street signs around. By this time if I ask someone for help, I may come across as slightly unhinged so I am hesitant. My senses are flooding with unnecessary stimulation, the noisy cars, the loud crowd, the smells of street food, the alternating puddles and mounds of plowed snow. All the buildings look the same and I no longer remember if I have walked by them or not. I keep looking back at the piece of paper and trying to figure out which way that street would be relative to where I am. It sounds absurd but this happens to me about once a week.
I have been on a campaign to become a more positive person this year. I do not want to drive people away by complaining all the time but primarily I am doing it for myself. Hence, I will vent on this blog. Like Bart Simpson punching the air with his eyes closed warning his sister that if she gets in the way and gets hit, he will not take the blame. If anybody reads this, it's not my fault.
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