[Based on earlier post, “Unfixable” and updated January 2014.]
For a long time I have been trying to figure out how to explain how it feels to live as the winner of a neurological clusterfuck jackpot. Every time I do, I wind up pissed, and sad, and to be honest, I just don’t want to talk about it any more. Most people want me to say that I’m doing super, just really, really super(!). I get a lot of “Are you all fixed up now?” They want me to say yes. If I don’t say yes, they are confused and maybe even upset. Maybe I’ll get a, “But you had brain surgery! Didn’t that fix you?”, or my favorite, “BUT YOU LOOK SO GOOD.” (Don’t EVER say that to someone with chronic illness. Trust me on this one.)
Depending on how much energy I have, sometimes I just say, “Sure. Yep. All fixed.”
But it doesn’t work that way.
I’ve got a bunch of neurological bullshit-ass conditions residing in this body. Some of them are congenital, and some of them are autoimmune in nature. I was born with a Chiari Brain Malformation and a Tethered Spinal Cord. The goal of treatment for these is to try to stop the advancement of deterioration and nerve damage, to try to decrease frequency and severity of pain, and try to achieve a better quality of life. It’s not something that can be fixed, per se, it’s a condition that can be treated, with varying success rates. My surgery and treatment was only partially successful, which is shitty. I have Epilepsy. This sucks ass, because, well, because it sucks ass. It’s dangerous, and can be really scary. It makes my body feel like shit. It’s not controlled with medications, and I am not a surgical candidate. (I also lost my driver’s license because of it. That definitely sucks ass.) Recently, a host of new syndromes have surfaced, and all of this is one hell of a mind fuck. Seriously. What the shit!? Anyway, when someone has such a significant host of issues, secondary conditions spring up as time goes on. Chronic head pain and nerve pain such as trigeminal neuralgia and occipital neuralgia, are a constant challenge. Paresthesia, double vision, loss of balance and/or depth perception, and fucking debilitating weakness and fatigue is maddening. Inflammation and scarring causes a host of other dangerous episodes. So, while my team of doctors and I do everything we can to make sure I have the best quality of life possible, I can’t be fixed. It won’t go away. It might get worse over time. The problem with that explanation is that it bums people out, apparently. Then I find myself feeling like I need to make them feel better about it. So I make jokes. They laugh. Everybody moves along. This happens over and over. I explain it, people get all bummed out, I crack jokes to make it better. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.
It is perfectly okay with me that my life might be harder than yours. Someone else’s life is harder than mine. This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself. Every single day that I live, the good and the bad, there is someone who would give anything to have that day. There are people, some, heartbreakingly young, fighting for their lives every day. Some of them will not see tomorrow. When you feel like you need to pity me, please think of them, and re-think how you look at your day. I am not fixable, and yet I am sincerely grateful to be here. Please be grateful with me. Please try to understand that any improvement from treatment, no matter how small, is a miracle to me. For all of the awful days, I still have really, really good days, and I spend those days doing ALL THE THINGS. Those are the days that I kick a little more ass, and prove to myself that I still got it, yo.
If you see me falter when I walk, offer me your hand. If I cannot recall the name of something, offer a suggestion. If I cannot be with you because I am in pain, offer me your understanding. If I am feeling overwhelmed, and tired, and sad, offer me a beer and a Kleenex, and for god’s sake, make me laugh until I pee my pants.
Just don’t feel sorry for me.
I spent many years hiding all of this from everyone. I’m tired. I want to be me, just as I am. I just don’t want you to be all bummed out about it, mmmmkay? I don’t know exactly what the years will bring for me. I do know that I’m not going to sit around worrying about it. Whatever this body has in store for me, I’m ready to figure out how to work with it. It will very likely be totally fucking awesome.
So that’s it. I promise to be brave, if you promise to be okay with all of this, be okay with me, just as I am, unfixable (and unstoppable, suckas!). Wut.
Here’s the most popular post, to date, from some of my neuro-bullshit adventures. Enjoy.