[QUOTE=Hampton Bay;5370312]
That was HUGE for me. Since my issues after my accident were all cognitive, everyone thought they had the answer to fix me. And when I told them that whatever idea they had either hadn’t worked in the past, or that insomnia due to brain injury is more complicated than just making yourself fall asleep, or that going out to crowded places on a daily basis, with the hope that eventually i would get used to noise and commotion, sounded like torture, or that I really was trying to pay attention but just couldn’t… I got tons of grief from everyone for not just being normal again already.
And it was very hurtful too that so many people kept trying to fix me. At first, yeah it made sense. But after 6 months, or a year, or whatever, it just makes you feel like you’re no longer good enough how you are. I started to feel like I should be ashamed of my issues, and that everyone thought I was just making things up. Because if it were that simple to “fix”, then nothing was really wrong with me, right? And since I couldn’t manage to fix it, then I must just want to be “damaged”.
So anyway, long story short, some people just don’t know how to cope with various disabilities, and it sucks to have people make you feel so crappy when they think they are just trying to help. So try not to allow it to make you feel bad about yourself. Just because you can’t do some things as well as you used to, that doesn’t mean you’re somehow not good enough anymore. I’ve found that for me, in losing some abilities, I’ve gained others. So you’re not better or worse than you were, just different.[/QUOTE]
I am in this process right now. Since my brain injury was four months ago, people are starting to wonder when I will “just be normal again”…sorry, doesn’t work that way. Even after I did my neuropsych evaluation not too long ago and had the proof in hand of cognitive disability, some people will still say “well if you did this, I bet it would fix the problem.” I’ve had several people say things to the effect of “coping strategies” being the ultimate fix - I just need to build new neural pathways, don’t you know! That will fix everything! They don’t understand that it will always be a disability - just because there are new pathways to get the job done does not mean that the disability is gone. It’s like pretending someone who can’t walk is no longer disabled because they use a wheelchair. Yeah, the wheelchair “gets the job done” of helping that person move from place to place, but no one would say that person is no longer disabled, just because their coping strategy (the wheelchair) gets the job done.
And I have similar problems with my physical issues. Yes, I’m a high-performance triathlete and I ride and jump without dispensations, but that does not make my hemiparesis, chronic spine issues, or seizures any less real. It just means that I’m blessed enough to have overcome them to a point where they are not visible to others except under certain circumstances, such as those last miles of a long run or a particularly difficult mare tantrum - it’s hard not to let the right side hang and be useless then :yes: But people see me fly through life at a million miles per hour and they just assume that I’m not disabled - indeed, that I’m super-abled. I don’t mind this, really, but when I do decide to disclose my disability to someone, it would be nice if they could just accept me at my word and not think that I’m claiming a disability for attention or any sort of benefit…honestly! Do these people think that I WANT to be disabled? Do they think I enjoy it? Do they think there is anything in this world I wouldn’t give to have my old life back?
I think the root of the whole issue here is lack of education of the public. There is still so little that is widely understood about different types of conditions and disabilities that people just don’t know how to act. And when people don’t know what to do, they are afraid. And then they distance themselves from the situation back into their comfort zone.
I’m fortunate to have a few very good friends who have stuck with me through everything and a couple new ones who just accept me for who I am. These people give me so much that there are times when I just have to tell myself that they need a break from my situation, so I try to give back to them as much as I can - listening to their problems, trying to help them…being there for them as they’re there for me. The others have either left, or we just don’t talk about my situation. I try to minimize contact with these people because pretending I am normal just doesn’t work very well. My parents have been awesome through the whole thing as well as my brother and his wife. The rest of my family still doesn’t know/understand and just sees me as a slightly more quirky/eccentric version of my old self. The time will come though to disclose to them the full truth, and we will see if they accept or dump me out of their lives.
But for now, if my life had only those people who are closest to me, I would still be happy. I don’t need the others.
