Turning a new page in the chapters of my life… again

open book with a landscape scene in the pages
This picture looks a lot more pleasant than my situation feels…

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:

  1. 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.
  2. 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.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

9 thoughts on “Turning a new page in the chapters of my life… again”

  1. I also struggle with the label “disabled.” It’s a shame we have to use labels at all as they don’t always work as their intended purpose.

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  2. My heart breaks to read this, BB. Stigma sucks – and is alive and well in the no-longer-so-good-ole USA. I’m sorry you feel you must live in the closet – like so many others who simply cannot chance coming out. It complicates at least as much as it facilitates, but I get it. Sadly.

    Your current NP sounds like his or her educational puzzle is missing most of the pieces in the box. SHAMEFUL commentary on the profession as a whole. Praying that you find a 21st century NP soon.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD/EFD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to transform a world!”

    Liked by 1 person

  3. Thanks very much for your words. It’s actually not all as bad as that (I don’t think…) It’s just one of those things I need to deal with. And I will. It’s not so bad, really. It’s a heckuva lot better than things were, just a few years ago. I’ll just do what I need to do, learn my lessons, and move right along 🙂

    Thanks again for your kind thoughts.

    Liked by 1 person

  4. Labels are handy shortcuts — “containers” for complicated combinations of ideas. They sure come in handy. But not everybody agrees on what the shortcuts mean, so you end up with… well, you know. Thanks for writing.

    Liked by 1 person

  5. As I have told you before, I have General Anxiety Disorder. The term is what it is to help medical staff deal with the disability, not to specifically classify the patient.

    Although I could probably benefit from more therapy, I choose not the rely on it. I am an independent soul who cuddles my freedom to be completely me. This does not mean I turn up my nose at help, however. I do take medication.

    We are all on our own path of life. Yours is quite different than mine. Please, though, do not sell yourself. You have knowledge in you that does not necessarily need a therapist’s meticulous guidance.

    Liked by 1 person

  6. Thank you. It’s not so much guidance I seek, rather the perspective of someone who can relate to me in non-psychological ways and work with me on the logistics of everyday life. Too many people think my issues are emotional. They’re not. They’re logistical. Only people who have a firm grounding in neurology and neuropsychology “get” that. So, I look to them for feedback that is free of psychologizing and emotional interpretations. That’s the only thing that’s ever worked for me.

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  7. I don’t know you. I don’t know your name, how old you are, what you look like. Until I read this last post I wasn’t sure if you were a man or a woman. It doesn’t matter because I wanted to say, I love you, Soul to Soul. As kindred spirits in many ways. What you’ve shared about has touched my heart and brought me to ponder upon many things in my own life. I sense that you feel alone. You are not. I’m a ditz in my 50’s who has also had a really hard life, multiple knocks on the noggin and basically had empathy beaten into me. But if you like I’m here for you. And your wife. As a friend.

    Liked by 1 person

  8. Thank you for writing. I try to keep my gender out of the discussion, because it can limit the way that people think about each other and systems. I also don’t want to go down the path of “I’m a man, so this applies to me, but not to women”, or “I’m a woman, so if you’re a man, you can’t relate.” It’s too limiting.

    So, thank you for writing. And thank you for the love. I’m feeling a lot of things these days, and alone-ness is one of them. Also, love. And hope. And a little bit of panic and anxiety, every now and then.

    Life is a lot for all of us to handle, no matter where we are. Whatever you feel towards me, I hope that you carry that into the rest of the world and share it with them. We all need it.

    And thank you again.

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