Unfixable

For a long time I have been trying to figure out how to explain how it feels live with chronic illness. 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. “But you had brain surgery! Didn’t that fix you?” Most times I just say, “Sure. All fixed.”

But it doesn’t work that way.

The goal of treatment for Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome is 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, and I continue to progress. 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. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.

So, today I want to tell you that it is perfectly okay with me that my life might be harder than yours. 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 my treatment, no matter how small, is a miracle to me.

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 a long time hiding all of this from all of you. 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.

And also, I’ll eat you up, I love you so.

48 comments

  1. Pingback: I want to meet @SaraSantiago & @AgustinSantiago IRL - Betsy A Decillis | Betsy A Decillis
  2. brewcitybabe4

    as a cancer survivor and currently facing my second recurrance I think I’m just going to print your blog and hand it to people this time around so hopefully they “get it”. I’m so tired of trying to explain it. There just aren’t words anymore. thank you for your words and your honesty. beers!

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  3. T_Haus

    Sara,

    We haven’t met, but I do enjoy your blog. I dig what you’re saying. Also, I haven’t lived with chronic illness, but I do understand about times that things just don’t go swimmingly, as they say. And you’re right; for the most part, I think folks would prefer that we lie, and just say that yes, everything is swimming right along. A truthful answer about pain or suffering of any sort typically catches the average bloke off guard, and suddenly he or she is faced with the idea that A) he/she didn’t really care that much in the first place and/or B) if he/she does care, there likely isn’t much it can do about the situation, and so it feels bad. Damn social etiquette and niceties, eh? I find that these are the times when real friends suddenly shine with a light that before, had perhaps seemed… ordinary. …Honesty about the way we feel can certainly be a good thing. So if we meet, and if it happens that you’re having a suckier-than-average day, I would be happy to sit and simply enjoy the lovely nuances of a craft or Belgian beer with you. Or an Emergen-C. But no combining the two. Cheers, and Happy Holidays.

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  4. afunnythinghappenedonthewaytomyfirstmarathon

    Hi Sara,

    I’m Wade, one of Anne Munkwitz’s brothers. She pointed me to your blog because of some junk I’m going through right now. Interestingly, both my kids have had surgery for tethered cord (my son at 7weeks; and it was much more complex than that). I’m dealing with nerve damage stuff from a car accident (I was on my bicycle) 7 weeks ago. I feel really weird (defeated) now walking with a cane. It doesn’t feel like this could be me.
    Thank you for giving me something honest to read that lets me see hope in attitude if not in just outcome and symptoms. I can’t wait to find out where my new norm is going to be.
    Again, thanks for posting this stuff where I could find it,
    Wade Lindberg

    Like

  5. Katie Felten

    Hey Lady,
    You are awesome and I love you to death. I have read all the comments and yes I am a little behind but I agree what everyone above has said.

    I think how can I be more like Sara, how can I be a better supporter for my network just like she is.

    I am not super funny but I can buy and drink beer with you and I will laugh with you.

    Like

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