I’ve shifted direction in my TBI recovery, yet again. I’ve had to do some soul-searching, over the past year, as I’ve adjusted to the change in neuropsychologists — and my insurance company said they wouldn’t cover the support I need on a weekly basis. My official diagnosis, for insurance billing purposes is “Generalized Anxiety Disorder”. Ha – if only they knew. Actually, my anxiety is very specific. It’s comprehensive and exhaustive in detail. Calling it “generalized” isn’t exactly accurate.
Basically, some doctor who’s contracted to review their cases said he can’t see any reason why I continue to need professional support from a neuropsych, and I should seek out “community support” instead.
So, I guess I’m supposed to attend support groups held by the local BIA or something like that. Or make more friends. Maybe call a support hotline. Dunno.
That’s all very well and good, and in a perfect world scripted by Hollywood, that would work. The thing is, I’m the sole caregiver for an increasingly challenged spouse, who has trouble walking, and is getting more emotionally volatile, impulsive, and forgetful by the month. I’m the sole breadwinner for our household, and my responsibilities include $upporting a weekly national broadcast that’s run on over 100 markets nationwide. I have a mortgage. I have a full-time job. I have a lot of people depending on me, but my ability to reach out for help is constrained by A) my reluctance to disclose my TBI history to anyone, and B) my spouse’s professional reputation, which is very much at stake.
If I disclose my TBI and the full range of my challenges (which extend past the brain injury stuff) and get 100% accurate about what I need and why, I will automatically enter the ranks of the “disabled”, according to the official definition.
And I can’t have that. No way. No how.
This is not a slam against disabled people. It is a slam against our society which stigmatizes and relegates the disabled to second-class citizens and makes it next to impossible to live a full life with a designation of “disabled”.
I cannot live my life in a “disabled” social/economic bracket. I just can’t. And as long as I can keep up the appearance of performing at “normal” levels, I’m going to do exactly that. Regardless.
If I turn to the community for help — leaning on friends and acquaintances and my social circle — my spouse will pay the price. Because they are keeping up appearances, too, and much of what they do with others hinges on others’ perception of them as a 100% capable individual. The mobility issues are obvious to everyone, but their cognitive-behavioral challenges only appear behind closed doors. I can’t go around telling the world about what really happens, because that would seriously hose their reputation and ability to participate and be accepted in the circles they work in.
So, there’s my conundrum. And there’s the reason I could really use a neuropsych who understands not only TBI, but other neurologically based cognitive-behavioral issues.
I have a couple of choices:
- I can find another neuropsych (“NP”) who can work with me, who is smarter about billing with the right codes, not to mention helping me rise above my current situation. I need to do this, anyway, because the current NP is very focused on just averting disaster — calling attention to the problems I have, rather than my strengths. I’ve developed a bit of a complex, working with them. My old NP was very focused on growth and development and living large, even in the face of TBI. This one… not so much.
- I can go it alone. I’ve done that before, and an awful lot of TBI survivors do just that. I’ve got access to a lot of great NP books — some on my bookshelf, some in the library — so I can study up on it, myself. I’ve pretty much rehabilitated myself, anyway, in many respects. My old NP told me so. I’ve sometimes wondered why the heck I have to work with an NP, anyway. I’m not nearly as bad-off as many. I’m more functional than even those who haven’t gotten hit on the head a bunch of times. Why not just handle this myself?
Here’s the thing — I really am focused on growth and development, and I’m also very focused on a neuropsychological approach. And it’s important to me to have access to a highly trained professional who can offer their expertise and insights to my situation. I’m not like a lot of TBI survivors who don’t have an academic interest in this stuff. I’m very different. And my results have been atypical for TBI recovery.
My old NP told me so. In 40 years of rehab work, they’d never seen anything like it.
So, anyway, I got a bunch of names to contact about getting another NP evaluation, as well as working with my situation to improve and take things to the next level. I got the info a week ago, but I took a bunch of days off, just to relax and let myself catch up with things. Now I’ve had my break, so it’s time to start calling around. I’ll do that this morning.
If I find someone, great. If I don’t, I’ll take matters into my own hands. Even if I do find someone, I’ll still do that. It’s all a work in progress. The next chapter… as the page turns.