I am self-diagnosed, and am 46. During my 30's, I was part of a small religious group run by ministers with psychology backgrounds, and they helped me improve my interpersonal and communications skills. I started to suspect Aspergers at that time. Four years ago, I had an undiagnosed brain aneurysm rupture and was in the hospital for 2 1/2 weeks. I was sent home by myself with no help, because I could walk and get in and out of the shower by myself. However, I had to call my sister across the country to help me decide what to put on a grocery list for a friend who was willing to shop for me. Decision-making improved a little over time, but can still be overwhelming unless I stick to my usual. I remember going to a local cafe about a month after the aneurysm, and staring at the multiple boards filled with drink options, and wondering how I would ever decide what to order. I stayed in the back, letting other people go ahead, for probably 10 minutes, trying to read through the board systematically, before I finally realized I could just get the drink I usually got.
"Aspies are acutely aware to begin with. When the brain is damaged,it is even more aware."
Yes, I have always been sensitive to sounds, especially high-pitched ones. I get easily overwhelmed now in group settings, not as much from the social interaction as from the constant background sound, now that every business establishment feels it necessary to play pounding music non-stop. Also, I enjoy singing in my church choir (alto), and it drives me nuts when we have to do warm-ups, and the sopranos are so loud and shrill!
"For me, I lost a lot of skills, but on the neuro cog, I did well. This is because I was Higher than Average everywhere BEFORE my accident. So the drs are like, "Yeah but your SHOULD be able to do those things....."
YES!!! This has been driving me crazy! I was unable to get any sort of speech/cognitive therapy because I tested so high. I knew I was worse than before, but no one thought I was bad enough to deserve help. I compare it to an Olympic gymnast being told post-brain-injury that, because they can walk, they don't qualify for further physical therapy.
I went back to work after 4 months. My job as a nurse practitioner entailed keeping track of tons of info about our patients, having emotionally intense conversations about illness and dying, being able to remember all the details of the conversation to document them, and then discussing it with the doctor, bedside nurse, case manager, etc. Pre-BI, I was able to balance all this. Post-BI, I couldn't follow the social cues as I had been taught to before, and I got really scared. I also kept forgetting details about the patients, even during conversations, which was very embarrassing! I kept telling my managers that I didn't feel I was doing as well as I had done before, and everyone kept reassuring me that I was doing fine, that they didn't see any difference - shows how well I can mask! Eventually, the struggle to keep going wore me down so much that I had to leave the job. I don't know how I made it for more than 3 years, but I did. Now I work 16 hours per week coordinating volunteers at a local non-profit. It is still a lot of people time, but it is less intensive than my old job, and I have more time at home to recuperate. But, because I still have gargantuan student loans, I may have to get a medical release to limit my work so that the student loan agency doesn't come after me and require me to get a full-time job if I can't handle one. Which makes me feel like I'm lazy, of course.
"Everyday I focus on getting back what I have lost."
I have mixed feelings about saying this, but I have given up on getting back what I lost. Maybe one day a bolt from the blue will strike me, and I'll magically be able to feel like I used to. In the meantime, I have had to accept my limitations. It is so hard to do "brain rest". I briefly saw a psychologist, for the BI, who recommended these 10 minute sessions with minimal sensory input (good luck doing that in a big city!) and keeping the mind quiet. My mind gets bored after just a few minutes, and I struggle between knowing I need to rest my thinking vs. my mind which wants to read, do a puzzle, anything but just sit there!
"One of my dr said the brain KNOWS when it's damaged. She was the smartest dr i went to. She can't explain it other than to say, the brain knows and acts on that, becomes fragile, second guesses itself. It's a fragile organ."
That helps me. It's not like I've done anything wrong to prevent myself from recovering (one of my biggest fears), but that my brain is protecting itself. After almost a year, I was able to get some PT for exercise tolerance (physical energy has also been very unpredictable), and she told me that "fatigue means healing". That has helped me too. I second guess myself all the time. I did that when I was younger, but was more confident in my 30s. That confidence is all gone now.
"She further said that all the struggle I had before the TBI had become almost second nature and NOW, it's like it is all in my face, fight fight fight all the time for things I used to fight without thinking."
Now that you say this, I realize this makes sense for me too.
Wow, this is really helping me put some pieces together. Thank you!
