Wednesday, July 15, 2015

The Man Who Mistook His Back for a Knife


Long before Bennett ever had issues with his brain, and long before the world ever even knew there was such a person as Oliver Sacks (thanks to a really great performance in a good film adapted from an even greater book), I was reading about neurology and psychology simply because I found it interesting.

Maybe part of it had something to do with the dual relationship I had with my own brain. Notice I use the term had as if to suggest this is a thing of the past. I'm so clever. My brain was my greatest ally, in that it saved me time and again, I believe, from fates that sometimes befall those in similar circumstances growing up.

On the other hand, or hemisphere, as it were, it also failed me because it never was a truly healthy piece of equipment. I've had some kind of depressive disorder all my life, and well that just plain sucks ze donkey balls.

Because of that I'll never fully trust my brain. It let me down.

Oh sure, I can beat on it Han Solo style and it can sometimes surprise even me but I can't take those glories as anything more than fleeting. My grey matter is still, at the core, just a couple of errant blaster shots away from the scrap pile.

Which is why for the past few years I have wrestled with the whole concept of the pain that continues to have a go at me. Anybody who has seen me deal with it knows...I don't. And that is partially because I don't trust my own brain...is all of it real? Could it be in my head?

Sadly, society does not help coming to terms with acceptance or denial of any answers to that question. There is a stigma to pain that can't be seen. Just as there are stigma to being knocked on your ass by the vicious brutality of severe depression, anxiety, post-traumatic stress, you know....kind of like Infantile Spasms, Epilepsy, Brain Tumors, Fragile X, Autism, SMA, Leukemia, Down Syndrome, all the things that are misunderstood and marginalized by so many who don't experience it if not themselves then through the eyes of someone they love.

I have a much greater understanding for why humans do what they do. I mean compared to six years ago. I would like to see change happen faster than it does, but it won't happen without a lot more people doing a lot more work. Couple of years ago maybe I would have thought I have what it takes to spearhead some of that, but my faith in my abilities as a person to lead anything are scrunched up alongside some pillows jammed under my hip propping my butt into the air trying to relieve some pressure.

Not THAT kind of pressure. Thank God for small favors. And iPads.

These past few weeks, through the stabbing and the flames and the sleepless nights I've wondered where this path ends for me. Does it lead to a final destination next to Bennett and losing some of my abilities? When it's really late and the pain won't let go until the sun comes up that thought is one of many that cross my mind before exhaustion wins the battle over the hurt.

Could be worse.

For me, a good sign is that I wrote about it. That means that I care enough at this point to put some wheels in motion. So I am, officially, dealing with it. With my doctor too.

I may not be able to get comfortable at the moment, but I take great comfort in that thought.

That means I've still got Hope.

I'll take that.

-Peace


6 comments:

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    :)

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  2. I'm such a prejudicial a-hole. I looked at her and thought...what the heck do YOU have to be depressed about?

    Of course, then I remembered, I am supposed to be a human being. I was smote for that thought this morning anyway...normally I don't start flaring until after 3-ish. Not today. WOOHOO!!!

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  3. Hey Ken, good to hear from you and sorry to hear about all the pain issues. I can't imagine how horrible it must be. If I was in your shoes I would surely be addicted to pain killers by now. I hope you can hang in there... and I hope you can find a doctor that can help you.

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    1. Thanks Kevin...I do take them, I am just lucky that the high has long worn off so i only take the prescribed amount every day, sometimes less, only when I get the intense pain. Got lucky i guess. Besides, It actually doesn't help all that much anyway. It's too widespread. Thanks for caring, and for commenting brother...I wanted to tell you...I really do appreciate it. I want to elaborate on it when I write about a visit I just had, but when you comment, it really helps me. Makes me think maybe I should do this more often. Thanks...

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  4. Thanks Ken, and please continue writing. Your blog and Danielle Foltz' (Trevy) were some of the first ones I found when Zac was having so many seizures several years ago. You are dang near like family in my mind and reading about everything you have gone through has actually helped me get through many of my own struggles. Plus the occasional entry on comics/games/movies doesn't hurt either :)

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