Am I Still Impaired?

“You might want to consider no longer using the term impaired to refer to yourself” says my new friend. “I know several other people with brain injuries, and you come across as very functional.”

Immediately, a surge of absolute rejection fills me. My brain dismisses her statement and throws it in the trash without a moment’s hesitation. I lean forward to explain her obvious mistake, and pause. I clench my jaw tightly to keep my denial from coming out of my mouth and think for a moment. Why the strong reaction? Why the immediate rejection? I am rarely so absolutist, rarely so unwilling to entertain another point of view.

I take a deep breath, and consider. My brain classified her statement with a hundred other conversations I’ve had that contained similar words. You know the ones, with people telling me how great I look, that I look fine. Perhaps they are trying to be supportive, but the underlying implication is that I must be healed, that certainly I can’t be disabled because I can carry on a short, routine conversation with an acquaintance and I am appropriately dressed. What I hear is a complete denial of the very real problems I face every day.

But, as I take a moment to consider what is actually going on now, I realize that I don’t feel insulted or threatened. I don’t feel like I’m not being seen. She is simply offering her honest opinion. New friend, new perspective. I don’t want to stay in a mental rut of seeing myself as injured or less-than, if that is no longer true. So. I force my mind to consider her words without defensiveness.

I’m foggy today. I know that. Getting the wheels turning to consider this new information is like slogging through knee-high mud. I can almost feel my brain creaking as I force the information through. And wait. Any insight? Any response? Nope. A little bit longer, and I give up. I’m too tired today to really figure this out, to judge this feedback. I’ll have to consider it another time, another day, when my brain is working more easily.

Several moments have passed – perhaps 30 seconds – and my friend has given me time to think through her statement in my own slow way. I appreciate that. Does she realize I’m using a lot of caffeine right now to be functional? And that meeting with her for two hours is all I’m going to be able to do today? Probably not, but I don’t want to talk about that. Instead, I share my most recent frustration.

“What about this: I started taking a new class in the evening. The next day, I couldn’t do anything – I just didn’t have the energy. I couldn’t carry on a conversation, I couldn’t drive, I couldn’t think.” Am I coming across as justifying? I hope not.

“The thing was, the winter beekeeping meeting was happening the next day. I’d put it on my calendar months ago. It’s an all-day thing, with training and informational sessions – really useful stuff. I knew I would have to choose between morning or afternoon, but I expected to be able to go to part of it. But nope, I couldn’t. All because I took a few hour class the night before. So stupid. What about that? What do I call that?” My chest burns with the unfairness of it all.

The topic isn’t resolved, but our conversation moves on to other things. I think about the issue the next day, and the next. For over a month I consider whether it is time to rebuild my vision of myself. Perhaps I am no longer impaired enough to be considered impaired? That’s a thought.

Life is much better than it has been. I am much more functional. I am still not able to work, or do more than about two things a day… but life is good. This year is much better than last year. And last year was much better than the year before.

But the class and then missing the bee meeting… what do I call that? If that didn’t happen because I was impaired, why did it happen? Hmmm… perhaps limited might be a better word. Impaired means something is wrong. Limited means not being able to do everything I want.

Everyone is limited in some way. Of the three hard limits in life – time, energy, and money – everyone has one or more limiting factor. For most people, it’s money or time. For me, it’s energy. Does that really make me different from anyone else?

Other people have dwindling energy. As people age, their energy decreases and they are able to do fewer and fewer things. Does that mean something is wrong? No, not really. It is just part of aging. But what about me? I’m only in my 40s. The organizations who pay for my daily living expenses certainly consider me impaired because of my continuing mental and physical fatigue. I’m not able to work because of it. So am I impaired in that way? Yes.

What about my memory? Right after my first mTBI, it was crazy bad. To keep track of anything, I had to immediately write it down on a post-it note and place it somewhere I would see it every day. It was 10 months before I could remember what someone said long enough to consider their statement. I didn’t consistently know what year it was until 2018. But with the increase in energy from my thyroid supplement, my memory has improved. It is still improving.

Medically, I am now considered average (25th-74th percentile). Whoo hoo! A big fucking range, and I expect I am on the low end…but doctors say my memory is good enough. As far as they’re concerned, that part of me is healed. My experience is quite different. There is a huge gap between my 95th percentile pre-injury ability and my say ~ generously ~ 50th percentile current reality.

When do I own that it is me, now, who is average? It hurts my pride to own my less-than abilities now, to take them in and call them my own. Much easier for my ego, my pride, if I call them other, call those abilities impaired. But what I’m working with now, memory-wise, is what a big chunk of people have always worked with. So. When I talk about my memory, maybe it is time to leave the idea of being impaired behind. I have less ability than I once did, yes, but I still fall within the average range. Average is, incidentally, good enough.

It’s been over five years. I am what I am. Limited, stymied at times by my own lack of functioning, frustrated by my current cognitive limitations. But, perhaps, no longer impaired. At least not in every way.

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Only fluff left of the bunny who use to live under our kitchen porch. I hope the fox or bobcat who caught him had an excellent meal. Thankfully, I am much less impaired than this guy.

About csequoia

I am the writer of The Foggy Shore blog, with a professional background in Environmental Science. Right now, I'm working on a book about living and healing from post concussion syndrome.
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8 Responses to Am I Still Impaired?

  1. Joseph says:

    Once again, I find your perspective very encouraging, not least because your writing communicates with clarity while resonant with detail, You, sharing your experience is meaningful to me. Thank you. Thank you.

    Liked by 1 person

  2. Marie Cooney says:

    I say: I use various compensatory strategies to live with the challenges of a Traumatic Brain Injury, which can change day to day. The difficult parts of living with an invisible disability is many people don’t see the physical, mental, cognitive, and social challenges and exhaustion, which can wipe me out for days if they only see me during short bursts of time. Choose your own words for your own reality, without shame. Lack of acceptance, denial, or minimizing by others does not change anything.

    Like

  3. Toni Frieser says:

    Once again Charlie…you hit the nail on the Head! It does get frustrating though…I’m nowhere what I used to be. It IS because of the PCS. It’s so limiting. Like you said two to four decent hours of strength. I find it hard to accept. But accept I must. I love the way you express exactly how my PCS feels. Thank you so much. Every once in a while I visit a mTBI support group. I would like to recommend your blog…ok?
    Best….Toni aka Antonia

    Like

  4. Toni Frieser says:

    Hi Charlie……I was wondering why my post is awaiting moderation. Did I say something wrong?

    Like

  5. rodrawls says:

    These are some of the same things I struggle with. As hard as it is for me to admit I now have a disability, I still have a hard time either when others refer to it as such or when my injury is invisible to them. In my mind it feels like neither of these scenarios is right. Yes I have an injury that in my good moments others think has healed. No, I’m not impaired or disabled or any other word like that…right? I don’t want to be treated special, there’s just times when I need quiet time and some space to recover, to be by myself with no one to see me in my weakness. These things spin in my mind all too frequently.
    Although I know I’m not alone in this, your post underlines that fact. That alone, in its own way, helps. Thanks.

    Like

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