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A letter came today. In the midst of a very trying week, in between conference calls, speaking engagements, and an overstuffed Inbox, it appeared. A letter with the power to calm a worried heart, provide much needed perspective, and offer a reminder of how much we all really need each other. One little letter.

The past few weeks have been disappointing. My neurological disease(s) continue to fuck up my groove, now causing issues my endocrine system. I’m spending more time in hospitals and doctors’ offices than I have in the last two years combined. We are planning and strategizing and preparing for battle. Some days it’s disheartening, frustrating, tiring. Other days, I just slam a gallon of coffee and give it everything I’ve got. (And then I blast “Damn it Feels Good to Be a Gangsta” by the Geto Boys on my car stereo and think, well shit, I’m still here, I still got this, B. This is some serious badassery. I just gotta keep doing what I do as long as I can do it. Because I’m lucky to be here.) So, there are good days, bad days, and everything in between, but generally, it’s been a tough burden to bear. And then…

A letter came.

Across the country, a five year old that I have never met has just come out of another neurosurgery. He has one of the conditions that I have, a tethered spinal cord with syringomyelia. The amount of pain and suffering that this little guy has endured, and will endure, breaks my heart. Through this blog, and a little help from a dear friend, this family in Oregon and I were brought together to support one another. I have a unique advantage in being able to help this little guy’s parents understand symptoms, treatments, prognoses, but also to be a sounding board, to try to offer advice on how to approach treatment options, and to be a source of strength and comfort whenever I can. We write, we speak on the phone, sometimes, we cry together, out of frustration and concern for a really great little kid. Today, this little guy’s dad wrote me a letter.

I won’t post the actual letter here. I want to maintain the privacy of our correspondence. Sometimes, words are too precious to share. What I do want to share is the reason for the letter.

Simply this, that they are grateful to have someone like me help them navigate this journey. That, because of the knowledge I can offer, they can (and have) saved their son additional pain and suffering. That it’s so incredible that a woman they have never met in real life could be so pivotal in helping them fight for their son. They think it might be God. They thanked me for being the messenger.

I cried in a way that I haven’t in a long time.

I don’t believe that I deserve accolades for helping others. I do believe that everything happens for a reason. If I am meant to live this life, with the challenges that I’ve been handed, so that I could make a difference in the life of a wonderful little boy who has his whole life ahead of him, then I accept my fate with *gulp* gratitude. I have always refused to feel sorry for myself. I refuse to be a victim to my condition. Because of what I’ve been through, I have the power to help others. That is worth everything.

A letter came today.

It opened my eyes to the power of reaching out and helping someone just because you can. That letter healed a spot in my heart that I didn’t really know needed mending. It brought me renewed perspective, it brought me some peace. It brought me news of a successful surgery and the hope of relief for a little guy that really needs it.

We need each other, all of us.

As Ever,

I’ll eat you up, I love you so.

On Sunday May 8th, I will bring Mustache Love to The Barrymore Theater in Madison, Wisconsin as part of the Listen To Your Mother Show.

I wrote Mustache Love after my daughter told me about being teased for having a “little mustache” at school. Earlier this year, I auditioned for the LTYM Show with the piece, was cast in the show, and am now preparing to unleash the love upon a live audience. Reading over the piece in preparation for the show reminds me of how a little blog post, on a lesser known blog, somehow turned into a movement of inclusion and would inspire a community to come together and stand vigil over a friend in trouble.

It began with a hashtag. My homey, @TheBusBandit, retweeted my blog post and added #MustacheLove to his tweet. The response to the blog post was huge, both on Twitter, on the blog, via email, or in person. So many people showing the hairy-ass love, and sharing their own versions of #MustacheLove. The mustache was different for everyone. For some it was their weight, others, bucked teeth, acne, height, skin color, the list went on and on. Everyone had a “mustache”. Everyone.

#MustacheLove became more than just a blog post. It was a common thread, a right of passage, the act of breaking free of what is “pretty” or “normal” or “handsome” or “good”. It was acceptance. It was courage. It was reminding each other that we’re all okay, just as we are. Because as grown as we are, we still forget sometimes.

Then came the mustaches. They came from everywhere. Mustache jewelry, mustache window clings, mustache pillows, mustache photos, a group of my running buddies ran a route in the shape of a mustache just to make me smile. In 2010, I needed #MustacheLove more than ever. I had two major surgeries, needed to ask for help more than I ever had in my life, and had to come to terms with a very different kind of “normal”. The months after the first surgery brought a roller coaster of highs and lows, emotionally and physically. Three months later, I needed another surgery. I talked a good game, but I was scared, pissed, and tired. I was gaining weight, I walked with a cane due to my deteriorating gait, and I looked sickly and shitty all the time. As much as I knew how to help my daughter deal with self image issues, I started feeling uncomfortable in my own skin. And I knew better, right? Sigh.

Then something happened.

I logged into Twitter the night before my second surgery to find that hundreds of avatars had been slightly altered. There, I found the usual faces of my Twitter feed, with one addition. Each one of them was wearing a mustache. A friend had created a Twibbon that overlaid a wickedawesome mustache over all of their beautiful faces. That night, #gosarago was a trending topic in Milwaukee. It was a glorious mustache vigil that I will never forget.

On Sunday, May 8, 2011, I will read Mustache Love to an audience of hundreds. And it isn’t the same Mustache Love that I wrote almost a year and a half ago. The words are the same, with some small additions and edits, but it feels different. When I talk about the day I made the decision to let my own (impressive, btw) facial hair grow (for 6 months) to show my daughter that good people will love you no mater how hairy (or heavy, or buck toothed, or pigeon toed…) you are, I won’t just be thinking about the good people who will love you in spite of your mustache.

I’ll be thinking of all the people who will wear one for you.

I’ve been struggling with a way to sum up this past year in one perfectly wrapped year-end post, all tied up with ribbons, nice and neat. I’ve begun this post countless times, always trying to find the best way to convey to all of you exactly what this year has been like. I have wanted to share with you how much your love and support (and mustaches) have meant to me this year. But it’s been a complete waste of time. I could never sum up what I have taken away from this year in one pretty post.

This year wasn’t pretty. This year was hard. It rocked me to my core. I am still fighting to reclaim much of who I once was, rebuilding pieces of who I want to be, and learning to make peace with the loss of things I can’t get back. Throughout this year, I felt an incredible range of emotions, from anger and fear, to acceptance and gratitude. The one thing I never felt was alone. In so many different ways, your tweets, your emails, your offers to help, your prayers, hugs and smiles, you guys helped me navigate through this year with hope and gratitude, and some days, maybe, just a little bit of grace.

Some of you, and you know who you are, sat at my bedside and held my hand. Others held my children, and made sure my family was fed. Some of you, without being asked, just kept showing up. It is something I will never forget, and those acts of kindness will shape the way my children live their lives and how they treat others. We are forever changed because once upon a time, a girl fell down, and an entire community came together to pick her up, dust her off, and carry her awhile until she could walk on her own.

I cannot think of any words of my own to express what I feel when I think back on this year. More than anything else, the thing that resonates most was more than just never feeling alone. You made me feel protected. Protected. That’s huge. It meant more to me than you could possibly know. There were times when it was harder than normal to pick myself up and get through one more treatment, one more hospital stay, one more fucking MRI. It’s those moments that I don’t talk about. I don’t tweet about them. Those are the moments that I have to dig deep. I have to forgive myself for feeling so weak, so sad. I have to pull it all back together and remember that my life is beautiful, even if this moment is not.  I remember earlier this year, sitting in the quiet, listening to this song, it made me think of all of you. Loving me, protecting me, never letting me stand alone, and I thought, “This is going to be okay.” You did that. I am forever grateful.

Timshel, Mumford and Sons



Thank you, for everything. I’ll eat you up, I love you so.

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.

This is what I did today:

  • Spent an hour of one-on-one time with Grace while Nora was at her swim lesson
  • Spent an hour of one-on-one time with Nora while Grace was at her swim lesson
  • Helped Nora make lunch for the family
  • Helped my girls get showered and dressed for a birthday party
  • I showered without needing assistance
  • French braided Grace’s hair
  • Walked 2.5 miles, my first substantial walk since the second surgery
  • Spent some time laughing with the Team Challenge team at their rummage/fundraiser
  • Took my children grocery shopping, without needing help from my husband
  • Fixed dinner for my family
  • Snuggled with my kids to watch television
  • Helped my kids get ready for bed, tickles and snuggles and tucked them in tight
  • Enjoyed a really fantastic craft beer (HOLLA!)

If you read this and thought, what the hell? What’s so great about that? I take care of my kids like that every day…so what?

Here’s what.

I have waited months to have a day like this. My children have waited months for a day like this. A normal day. An ordinary day. A day that made me feel like the mom my kids deserve, again. There are many things that I look forward to being able to do as I become stronger and healthier, but above all, I am grateful for “ordinary” days. I realize now how lucky I am to have many more ordinary days ahead of me. What once was ordinary has become anything but.

Maybe this is part of what I’m supposed to learn through my experience with Chiari Malformation, Syringomyelia and Tethered Cord (Spina Bifida Occulta). Maybe it’s a lesson in gratitude. A reminder that every day and everyday activities are a gift. Imagine if you couldn’t walk around the block or comb your daughter’s hair. You’d give anything to have “ordinary” back. And it will never seem ordinary again.

Later Gators.

NOTE: I promised you all a pretty intense post about dealing with chronic illness. It’s coming. It’s taking a bit longer to spit it out. It’s…complicated. Anyway, I had to post this one today, because I am beyond thrilled to have had such a wonderful day. I just had to share this with you.

In short, I promise to get back to being a complete jackass as soon as possible. 😉

WARNING: This post contains a high level of sarcasm, thinly veiled (or not at all) discontent, and swear words. Even my patience wears thin. While I realize that I am very fortunate, and remain a grateful patient… Well, it wouldn’t be me if I didn’t give you guys the low down of the most recent hospital shenanigans. Good god it sucked. I high-tailed it out of there as soon as I could. Read at your own risk. Or don’t. Whatever. It’s cool.

Musings from the Neuro Floor…

  • Let’s play “How many times do we have to stick Sara with the 18 gauge needle before we can start an IV?” Go! *face palm*
  • That’s right, genius. I’m still awake. Better ratchet up that anesthesia cocktail, it takes a lot to put this old girl down. (Sucka.)
  • I heart TED stockings. I heart them so very much.
  • Immediately after recovery, I am wheeled to my room. Our room. Me and my roommate. My “roomie”. I have a roommate. I was not aware that I would have to share a room, or for-the-love-of-jebus, a toilet, in a hospital, can this even be legal anymore?¹ *sobs*  She likes to watch crap daytime TV while talking on the phone. She also has a husband. He likes to smile and wave at me. All I have is the mother of all headaches. I request to be moved to the nearest supply closet.
  • I, for one, really enjoy the 4:00 am blood draws. I like to pretend it’s my pre-dawn acupuncture. Really, don’t just draw the blood and leave. Flip on the lights! Stay! Tell me about some random shit your husband did at the bar and how you are raising your grandkid. It’s all really interesting and awesome. And also, I like your homemade tattoos between your thumb and forefinger. Looking good. Looking real, real good. *finger guns*
  • Ladies, nurses, CNA’s, have you ever had a spinal headache?  These are hospital beds, not bumper cars, please make a note of it.
  • Dear Roommate-That-I-Hate-For-No-Reason-Other-Than-You-Happen-To-Be-There, I am happy that you are ambulatory. Yes, I see you have a walker there. If you bang it into my bed one more time, I will have someone hide it…very very far away from this room.
  • O HAI morphine! (We bring you Loooooooooove.)
  • Did I mention that I had a roommate?
  • It’s really no problem, I carry large bags of my own urine with me on a regular basis.
  • Let’s try repetition-for-learning. Repeat after me: “I will not forget Mrs. Santiago’s morning meds. I will not forget Mrs. Santiago’s morning meds. I will not…”
  • Go ahead, trip on that foley catheter one more time, just one…more…fucking…time.
  • No, no, it’s fiiiiiiine, just the other day I was saying that I should really look into one of those bladder infections. I mean, who really secures foley catheters properly these days anyway? Pfft!
  • There is a difference between refusing to eat and refusing to eat THAT shit.
  • NOBODY EVER SAID A GOTDAMN THING ABOUT A ROOMMATE. (Fucking shoot me.)
  • Thank you, transport person, for comparing the pain from your liposuction two weeks ago to my recent craniotomy-cerebral tonsillectomy-laminectomy-duraplasty and subsequent laminectomy (that’s right, another one) and spinal cord detethering procedures. Yes, yes, your boobs and belly look great.  Oh and hey, that was awesome, in the elevator, when you started digging through my hair with your press-ons, asking what all the red stuff was and “what the hell did they do?” to me. You are one terrific asshole, and I will miss you most of all.

Later Gators.

.

.

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Footnotes:

¹Predictably, someone is going to get all riled up because I’m bitching about sharing a toilet when others “don’t have access to healthcare” at the level that I do. Listen up, Jack, because I’m going to share something with you. I have paid a shit-ton of money this year in medical expenses. We have had to prioritize our household expenses and give up certain things so that we could afford this. Based on what I have already shelled out, not only should I get my own fucking toilet, but it should be made of gold, feel like silk, and wipe my ass for me when I’m done.

Moms don’t get sick. They don’t take days off. It’s just the way it is. Once you have kids, you just grit your teeth and deal with it, whatever it is, cold, flu, migraine, cramps, broken leg, whatever. Moms don’t get sick.

But what happens when they do?

For any parent facing a serious or long term illness, the worst part about it, hands down, is how it affects your kids. Since we’re moms, we can deal with everything else (pain, treatment, surgery, setbacks, anything) with a brave face and (hopefully) a positive attitude. What we have a harder time dealing with is how to protect our kids from our illness. It’s a special kind of mom guilt. It’s guilt for being sick in the first place. It’s useless and nonsensical, but there it is. We feel terribly guilty about all of it, because moms don’t get sick.

My kids have been dealing with my illness on some level since they were born. In the last two years, as my condition progressed, they have had to deal with it more often. They have spent the better part of this year dealing with it on a daily basis. They are worried. They are angry. They throw tantrums more often, and they are extremely sensitive lately. Sometimes I look at them and think they’ve finally just gone bat-shit crazy. Sooooooo, my husband and I are working with them and our pediatrician to make sure that we are doing the right things to help them cope and reassure them that we will all get through this. And we will.

In the meantime, we have made some modifications to our lifestyle and our home. We moved a card table and chairs into my bedroom so the kids can hang out with me as they color, play, read, eat, whatever. Sometimes we move Friday movie night into my bed. We have found we can do lots of stuff in mom’s bed, read, play games, cards, play video games…lots. I spend all of the time, that I’m not working, with them. And I wouldn’t have it any other way. I look at this time as an opportunity to teach them life-long coping skills, empathy, compassion, and that even though life isn’t perfect, it can still be great.

As it turns out, moms get sick. But if we are very lucky, we can also get better. In the meantime, life doesn’t stop. It might change a lot. It might be harder than it once was. It might not be what anyone would have chosen. But it’s still life. As long as we’re here, we have to treasure it. As moms, we have to take every opportunity we get to help our children grow physically and emotionally.

We have a choice: We can let the mom-guilt consume us, and feel sorry for our children, or we can use our circumstances to make our children stronger.

Some of the strongest people I know happen to be the ones that have faced adversity and used their experiences to build an amazing life. Many of them have faced challenges more difficult than my own. These people are my heroes. They inspire me every day to be the best mom I can be, and to guide my children through this time with love, humor, and gratitude. We’re going to have good days, and we’re going to have bad days. We have to remember to be grateful for both.

It’s been awhile, huh? (If you missed the 2.0 post, check it out here.)

Plenty of times I’ve begun an update post. Each time, I toss it. Here’s a secret for anyone who’s never had to deal with medical shenanigans of this type:

We are kinda sick of talking about it.

We pretty much just want to get through it, get life back to some semblance of normal, to feel like ourselves again. We don’t want to make a fuss. I mean, there are so many people dealing with much, much worse.

(Seriously, punch me right in the face if I ever get all too dramatic about this.)

I get to live. My kids are scared, but they’ll be ok. My husband is exhausted, but he’s hanging in there with me. My friends and family have repeatedly surrounded us with love and support, and they amaze me on a daily basis. So, I’m lucky. I’m grateful. And I just want to quietly heal this body without much fanfare or drama.

I’ve learned a lot. I’ve learned that a positive attitude is absolutely essential in recovery from any illness. I’ve also learned that unrealistic expectations can chip away at your positivity. If you are not honest with yourself about the changes in your body and the changes in your life in general, you can easily forget to appreciate the opportunity you have been given, opportunities that not everyone else has.

Healing from surgery and learning to cope with a life-long condition requires patience, gratitude, perspective, and a whole lot of humor. It would be easy for me to fall into pity-party mode, but what would that get me? Jack shit. That’s what.

I’m lucky. I know that. This isn’t an easy road, but most things that are worth it aren’t. I got a second chance! No one said it was going to be a fucking pool party. Some days are tougher than others. Some days I am a bit more impatient than I should be. I’m learning. I’m getting there.

So aaaaaaaaanyway…

Turns out, I need a second surgery. This one is to treat my tethered spinal cord. This condition, related to Chiari Malformation and Syringomyelia, causes a veritable smorgasbord (orgasboard)* of neurological symptoms. It’s progressing faster than I had hoped it would, and we need to address the issue before any more nerve damage is permanent.

So, watch for the newest upgrade, coming September 2010. It’s gonna be bananas.

Later Gators.

*see what I did there? #bwahahahahaha #holycrapimfunny #thatsenoughsara

Oh, and because enough of you have asked, yes, I have a totally badass scar. Dig it.

Sara's Chiari Incision

And a scar like that earned me this. Holla.

Bad MerFer Wallet