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.
49 comments
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November 1, 2010 at 6:21 pm
Ed Cetera
I just want to make sure you understand how much it pisses me off that I can’t make you laugh as hard as you make me laugh. Makes me feel like a mooch. Love you, mama. I’m gonna go change my drawers now. I may or may not have peed my pants upside down just now.
November 1, 2010 at 6:22 pm
Carrie
Thank you for being you.
November 1, 2010 at 6:27 pm
Sarah
Hey lady. I love you. To the moon and back with maybe a few detours along the way. I am lucky and blessed and grateful to have you in my life. I am here for you always. π
November 1, 2010 at 6:30 pm
Mosey
Am I allowed to make fun of you and say you smell like dried urine if I make you wet yourself laughing? Love you much!
November 1, 2010 at 6:35 pm
Alison
how could feel sorry for one of the coolest, smartest, funniest and all round bad-assiest women i know?
i do sometimes think…
how can i be more like Sara?
how can i hang out with Sara again soon?
how can i make that soon, turn into sooner?
and how flippin’ lucky i am to know Sara….
Great post as always. Can’t speak for anyone else, but for me, you just go ahead and be you whatever that is today. And i am good with it.
November 1, 2010 at 10:47 pm
Sara
That’s it. I’m planning my next trip to Canada. *digs out frequent flyer card* xoxo Love you.
November 1, 2010 at 6:39 pm
Milly Gonzalez
We love you Sara, & we’re are blessed to have you (just as you are, still Sara)!! Hugs from the Gonzalez family.
November 1, 2010 at 10:47 pm
Sara
I love all of you right back. xo
November 1, 2010 at 6:39 pm
Charlie
Sara Santiago, ladies and gentlemen. To know her is to love her.
November 1, 2010 at 6:49 pm
Raymond (Spiffster)
Sara you are one of the most kick ass women out there. Keep doing what you are doing because honestly the world needs more of it, everything, all of it. Much love and respect
November 1, 2010 at 6:52 pm
Stu Nami
I hope you I don’t make you pee yourself, cause once you’re done laughing, well, that’s not so funny, right? But I’ll take any giggles I can get.
I think we all hope that those we care about will always have a fantabulous day. But that’s impossible, even for the fixable, or fixed, etc. It’s that damned caring that just gets in the way sometimes.
I am very glad that you’re you. I hope someday to be able to pick that brain of yours, get schooled to be so cool, and get a hug or two. π
November 1, 2010 at 10:46 pm
Sara
*tackle hug*
November 1, 2010 at 7:09 pm
Lace
Awesome blog post. I’ve been looking for those exact words. All the time people ask me why I’m not all fixed. Hang in there chiari sister
November 1, 2010 at 10:46 pm
Sara
So glad you found this post. Chiari sister, indeed. We don’t need to be fixed. π Much love to you tonight. xo
Sara
November 1, 2010 at 7:29 pm
L.
You, Sara, are absolutely amazing. You’re witty and funny and serious and smart and it is so clear that you have a huge heart.
You, my dear, are so much more than a diagnosis. And if anyone is ever making you feel like you have to keep blogging or talking about that or about how it feels, we’ll take ’em out for you.
November 1, 2010 at 7:31 pm
Bill
God Bless Sara!
November 1, 2010 at 7:48 pm
Joe Sorge
Whoa!
Wow.
Thank you.
November 1, 2010 at 8:09 pm
Phil Gerbyshak
You rock so much Sara! No pity party here, just a LOT of love and hugs and prayers. Hang in there sistah! You are amazing, inspiring, and piss your pants funny.
See you soon! I’ll be the one reminding you who I am…whenever we get together!
November 1, 2010 at 8:24 pm
Sara
See?! You guys are proving my point. How the hell can I feel sorry for myself when I have friends like you? I’m going to fall down. A lot. But there is always someone there to help me up. And THAT is something to be most grateful for. My cup runneth over.
Much love to you all. And I just want you to know that offering to buy me many beers will never, ever be mistaken for pity. Ever. Even if it said beers are delivered to my place of business, you know, 161 S. 1st Street, Suite 200… Oh geez! Jokes! I crack myself up! (Milwaukee, Wi 53204) KIDDING! π
November 1, 2010 at 9:24 pm
Lana Wright
You are loved. You are perfect as you are. Thank you for being honest.
You’re truly amazing Sara
November 1, 2010 at 9:30 pm
bullmeister
What a healthy perspective. I wish more people would look at struggles in life from your point of view.
November 1, 2010 at 10:44 pm
Sara
I wish BabyJudeCrawford would come to my house. I wonder who I could talk to about that. π Nick, the support and friendship you guys give me (and my family) is exactly why my life is beautiful. Thank you.
November 1, 2010 at 9:49 pm
RightGirl
It says something about the state of our society when someone who is clearly ill feels the need to apologize for not being well. I do it when I feel weak. You feel the need to make others feel better about your illness. Why should you feel bad about feeling bad?? No, I don’t feel sorry for you that you’re sick, because you’ve obviously got a handle on it. But I certainly feel sorry for anyone who needs to be comforted about your illness (family notwithstanding, of course).
RG
November 1, 2010 at 10:43 pm
Sara
Thank you. You said it perfectly. I got this! π
November 1, 2010 at 9:52 pm
Cindi
Got your back sista… you know it… keep rockin’. And when that beer gets delivered… you BETTER call me. Cuz you know, we share and stuff. π
November 1, 2010 at 10:42 pm
Sara
*wink* Oh that’s how we do, Mama. Yep.
November 1, 2010 at 10:30 pm
Prc2u (paul)
Sara I respect your courage and honesty. Pity does no good for anyone. Your real friends will be there for you and offer understanding. I have not had the honor of meeting you but I still am in your corner when you need me! Paul
November 1, 2010 at 10:41 pm
Sara
We will need to remedy that and have an AJ Bombers burger together. π
November 1, 2010 at 10:34 pm
Katy
My first time here. Can I just say “yes” a thousand times over to this post? My son has cerebral palsy from a stroke at birth and even now there are people who just want us to tell them that he’s going to be just fine. He’s not, though, and we are OK with that. We are grateful to have him here with us–no matter what. You described the whole thing so perfectly–I would try to tell you the best parts, but really the whole thing is just perfectly true.
Thank you for this.
November 1, 2010 at 10:40 pm
Sara
Katy,
Thank you for your words. And for your strength for your son! He doesn’t have to be “just fine” because, really, he’s “just fine” just how he is. Perfect doesn’t equal extraordinary. And I bet he is. So glad you stopped by the blog. Much love to you and yours.
Sara
November 1, 2010 at 10:35 pm
LaackeMatt
I promise, if you ever fall down and I’m around, I’ll sit beside you and bring a few bottles of some strange belgian beer that I think only me and two other people like, and we can hang out on the floor.
And it isn’t “falling down.” You can call it “Flash Mob Sit-In Party Of One.” Cause you’re just badass enough to pull something like that off.
November 1, 2010 at 10:41 pm
Sara
Such. A. Deal. β€
November 1, 2010 at 10:48 pm
Mare
I brought cupcakes, candy and beer to the wrong address? Holy shit. Guess I need to make another trip to Sam’s this week.
Love ya, mama. You can borrow my Depends any time you want. The clean ones, I mean. Like, not used.
November 1, 2010 at 11:08 pm
georgiecakes
I stumbled into you on twitter through a mutual connection and read your post about brain surgery, my heart sank with relief. I identified because like you I have this weird brain thing too, and I have had a hard time relating to others the specifics of when, how, if ever, blah, blah blah. I feel like I have to constantly reassure folks that everything is going to be ok and it’s exhausting. It’s exhausting explaining and then I especially loath the empathy afterward. I love that your taking this opportunity to voice your thoughts here – this way you can just direct people to this link instead. #justbrilliant – oh’ this isn’t twitter π I started following you because of your tenacity, smarts (ass) & brilliant comments and I think your super cool! Your a Super Hero!
November 1, 2010 at 11:28 pm
Sara
Sweet Baby Cheesus, that’s awesome. I’m so glad you did stumble upon this blog. Thanks for adding your perspective. It means a lot. Keep on keepin’ on, sister. You can always come here for jackassery and shenanigans, and you don’t have to make anyone else feel better here. β€
November 1, 2010 at 11:14 pm
Charno
Go on with your bad self! You’re pretty awesome, fixable, unfixable. It doesn’t matter. You bring joy, laughter, jackassery and straight up no BS to the world. Whether it’s from the floor or roof tops, I’m happy to lend a hand and pass you a beer, pity not included π
November 1, 2010 at 11:30 pm
Sara
Having a Charno is one of the reasons “I got this, dawg.” I’m blessed to have you around.
Country and Western song coming to an Ascedia kitchen party this holiday season. π
xo
November 1, 2010 at 11:43 pm
Scott
I’d go from here to the moon for you, young lady. Especially if I did it in a monkey suit to make you pee your pants.
Adore you and your family.
November 2, 2010 at 3:42 am
Elysia
Mama S… You are such an inspiration. I’m so proud of you and in constant awe of your strength. Keep truckin’, we’re right beside you!
November 2, 2010 at 7:10 am
Amy
Anytime you need a laugh, let me know. I have a full arsenal of jokes that only you will appreciate. Mostly because they make fun of people. And we’re cool peeps like that.
Don’t be afraid to be who you are. You don’t have to be strong for me. Just be you. And I’ll be me. And I’ll be here anytime you, Augie or the precious babes need me.
#meloveyoulongtime
November 2, 2010 at 7:36 am
Angie Sorge
Promise. Pinky swear. *smooch* Not sure you could be any more awesome.
November 2, 2010 at 3:21 pm
vojha
You rule GeekFeet!!!
November 5, 2010 at 12:55 pm
Deb Brown
Sara –
Wow — that was awesome. Freaking awesome. I get it. Really. It’s nice to have someone put in words exactly how they want to be treated. Wow.
Now, I’m trying to think of some funny stuff -or wild witticisms – or brilliant observations to make you laugh. But my brain is still stuck on WOW.
Wow. Thanks.
November 18, 2010 at 10:52 am
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.
December 1, 2010 at 1:14 am
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
December 6, 2010 at 4:56 pm
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.
December 15, 2010 at 6:19 pm
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!
August 12, 2011 at 7:10 am
I want to meet @SaraSantiago & @AgustinSantiago IRL - Betsy A Decillis | Betsy A Decillis
[…] have the biggest hearts and have been through the most. I remember reading Sara’s blog post UnfixableΒ and being almost surprised that it was the same person. And then there’s the mustache love. […]
October 9, 2013 at 7:20 am
DEN
NOT A BAD PERSON I’M JUST UNABLE TO AGREE WITH SO MANY CONTROL FREAKS OUT THERE……I DO HAVE MY BEST FOOT FOREWARD BUT SOME TIMES IT KICKS THEM IN THEIR BALLS,,,I’M NOT SORRY…SOMETIMES…L.O.L. I HOPE YOUR NOT HAVING A BAD DAY,SO,HAVE A BEER ON ME ,SUCK IT DOWN,,,LATER.