It’s difficult to adequately explain what it feels like to have a serious degenerative illness and have to listen to the barrage of ignorant or callous (and all too often, both) political rhetoric surrounding healthcare legislation. Like most people, I’m angry about the constant disingenuous spin on the health of the ACA and the manufactured need to repeal it rather than attempt a bipartisan effort to improve it. But the thing that bothers me the most is a big part of why all of this is happening in the first place, lack of empathy and the seemingly growing number of people who are unable to show compassion for people who’s life experience is different from their own. Instead of trying to understand each other better, it’s easier to manufacture a narrative that justifies discriminatory behavior. If you label groups of people as other-than-you, it’s easier to dismiss them. “Twenty four million people will lose coverage under this plan? Well, then they should stop being poor. They must be careless with their money, why should I have to contribute to their well being?” “Lifetime coverage limits cut off your kid’s chemo treatment? Where’s your life savings? Why don’t you sell your house? Start a GoFundMe page. It’s your kid, figure it out.” Basically, poor people need to stop being poor, and sick people should’ve planned better.
All of this other-ing and distancing of oneself from entire groups of people makes it easier to be flippant when discussing ideas that benefit one group to the other’s detriment. For instance, throughout all this debate around healthcare, people who spend a lot of time justifying legislation that would allow insurers to discriminate based on a patient’s medical history often talk about “the sick” as if it’s a term for some hypothetical life experience of a nameless, faceless group entity. I get a similar impression when people throw around terms like “pre-existing conditions”, “lifetime coverage limits” and “high-risk pools” as if these details aren’t really a big fucking deal. I realize that, for generally healthy politicians and pundits, these terms are just talking points. They don’t seem to want to acknowledge the real-life (and death) gravity of their words as they dance around the consequences of proposed legislation that would remove the very consumer protections that people’s lives depend on, that my life depends on. Perhaps it’s because they’ve had the good fortune to be generally healthy, or perhaps they just aren’t capable of taking an empathetic stance on issues that don’t directly affect them. (Or perhaps they don’t give a shit because they’ve got a tax break to deliver.)
I guess what I want to say, at the heart of it, is this:
I’m not “other”.
I’m not a nameless, faceless, abstract entity.
I’m not broken, I am disabled due to disease, but that is just one small part of all the things that I am.
I’m not lazy or irresponsible and I didn’t do anything to deserve what happened to me.
My name is Sara.
I have silver hair and a crooked smile.
I’m a wife, a mother, a daughter, a sister, an aunt, and a friend.
I have my grandmother’s uncontainable cackle-laugh.
I’m a listener and a storyteller and a painter and a woman and a human.
I might even be a lot like you.
And I’m just trying to make it to tomorrow.
Thanks for reading.
Go do something good today.
A lot of people ask me for advice on how they can help their loved ones who have chronic, degenerative or terminal illnesses. They especially want to know what to say, how to talk about illness, and feelings, and fear, and all the awful things. I can’t speak for everyone, but I can offer what I know, what I feel, and how my friends and family have helped me.
There are a lot of ways to respond when a friend with degenerative illness shares with you the latest shitty (and scary and often humiliating) ways that their body is breaking down, or the horrible treatments they endure, or the conversations with doctors that are heavy enough to crush even the most valiant among us. People tend to say things like, “It’s going to be ok.” or “But you look great.” or “Have you tried [some shit I read about on the Internet]?” or “You can beat the odds, and maybe they’ll find a cure…” or at least something that sounds helpful or hopeful.
And it’s hard to know what the fuck to say to someone you care about when shitty things are happening to them, because you want those things to NOT be happening to them. You want to make it better, or at least easier, and you are totally freaked out about saying something wrong. (And we know you love us. We know your hearts grow heavy for us. We don’t talk about the hard stuff often because we love you and don’t want to hurt you either.) But, in that moment, we don’t want to hear that it’s going to be ok. It’s not ok. It won’t ever be ok. And we’ll figure some shit out and adapt. But, in those moments that you manage to get us to talk about it, those times when we don’t gloss over it and change the subject, don’t freak out. Just listen.
Listen to what we say.
And let it be shitty.
Let us be sad or pissed or tired or defeated. We won’t always feel that way. But if we tell you the truth, (the stuff we usually don’t share because we don’t want to bring everybody down all the goddamned time), it’s because we need someone to be with us in that particular shitty moment. Don’t try to make it better. Don’t try to clean it up. It’s messy and awful, and we’re hoping with all of our might that you’ll just be there with us in that moment. It’s a place we usually visit alone.
We stay there for a little while sometimes, and before we can climb out and try again tomorrow, we have to
Our most vulnerable selves are peeking from under the blanket, for the chance that you’ll stay, for the chance that your hearts love our hearts enough to sit in the messy and the awful for just a little while.
It takes a real friend to say, “Well that’s goddamned horrible.” and then pour a drink or make a snack and let us talk, and cry, and laugh that not-really-funny-but-I-don’t-know-how-else-to-cope laugh about how fucking seriously ludicrous it all is.
So, my advice to you and your worried heart is: Stay.
Stay with us in the awful moment. It’s a lonely place and invites to join us there might be rare, but if you get one, please accept.
I’m considering adding some additional hardware to my previously upgraded brain. Consideration for any additional parts is hard for me, no matter how big or small. This one’s called a vagus nerve stimulator. No brain surgery would be required this time (yaya!), just a simple procedure to implant a small device into my chest and feed the wiring up to my neck to attach its leads to the vagus nerve. The device stimulates the vagus nerve and can potentially halt some seizures in their tracks or at least make them shorter in duration and severity. It isn’t a cure for my seizures, but combined with the medications I take, it may improve my situation. As with anything, it comes with risks, and having gone through my fair share of medical procedures and various treatments with varying levels of success, I need to take the time for careful consideration of all potential outcomes. Aside from the fact that I have intractable or “refractory” Epilepsy (Epilepsy that does not respond to medication therapy), I’m considering this option because the damage from a specific type of seizure activity I have is now clearly affecting my cognitive abilities. I’m getting “dumber”. (Jokes are welcome, but only if they are really, really good. I’m still an asshole at heart, and it’s still potentially funny. Sometimes. Bring your A-game, fuckers.)One of my greatest fears is slowly becoming reality. I don’t know how to process this, yet. I don’t know how to glean the positive from this. I don’t know how to turn this one on its head and shape it into something ok. All suggestions, other than feeling sorry for myself, are welcome.
I’ve taken many aspects of this in stride, because I’m fucking awesome, of course. But this one is the hardest. It’s getting harder to write. I’ve always felt that as long as I could still write, could still tell stories, that the best of me remained intact. My ability to write, and do it well, serves as a personal benchmark for holding on to my brain as it functions as Sara. If I can still tell stories, I’m still here.
Perhaps pieces of me are beginning to depart. Perhaps, if I’m being honest with myself, pieces of me are already gone. (Yes, Sara. They are.) At what point do I lose me, Sara, the Sara I identify with, the Sara that has always been? Will there be a point when I don’t even notice these changes at all? It’s kind of a giant mindfuck, to say the least. Tears have been shed, sleep has been lost, and I’m tired of expending my limited energy on it, but there it is.
Physically, changes have been happening to my body for years. I remember the first time that fact really hit me, like roundhouse to the face kind of hit me. I was looking through photos from when Nora was almost one and Grace creeping up on three years old. We were at the pumpkin farm on a sunny day in October. The visit to choose the perfect pumpkins for beautifully imperfect jack o’ lanterns was fun, and the photos are great. I lingered on a photo of me holding Grace in the pumpkin patch. The very first thing I thought as I stared at the photo of myself was, “I remember her.” A profound sadness washed over me. Then all the feels all at once — I felt a boot kick to the pit of my stomach. I felt an odd sort of panic, a need to scramble and catch her, and goddammit hold on tighter this time. I felt angry because I didn’t appreciate her enough when she was here. I felt like someone should mourn her, at least for a minute or two. I decided to take those minutes, and maybe a few more. Then I quietly realized that … I miss her. I wondered if Augie missed her too. Then something bigger hit me. A feeling I can’t yet describe properly. A crushing, cruel feeling sat down on my fucking chest.
The girls will never know her.
They were so young. She was gone before their memories could really take hold of her. More than anything, that was the single most heartbreaking realization I had that day. Maybe ever. I wept. I sat on the floor of my closet so no one would hear me, and I wept. How badly I wanted them to know her. How badly I wanted them to love her. How terribly much I wanted her back.
I catch glimpses of her now and then, and in those moments I try to get her to stay. I tell stories about her. I cling to my memories of her. I secretly wait for her to come back. I play the part of Her for as long as I can, until she’s tucked away in the crushing grip of an angry, crowded, damaged brain, or whisked from my sight in the unforgivable throes of an electrical storm.
She left with stories untold, things undone. Her departure, not all at once, was subtle enough not to stir my concern until she was far enough gone that I couldn’t reach her. I convince myself that if I had noticed the small stuff, I’d have held her more tightly. I’d have chronicled her days with the most perfect words. I’d have written her lines so you could hear her laughter between the syllables. I’d have kept her safe from the storm.
The Sara I am has so much more to do that I can’t waste time lamenting over the Sara I lost. The Sara I am feels like less-than, but I’m trying, every fucking day, to see her as different-than instead. I am trying to be kind to Her. I am trying to be patient with Her. The last time I spoke on stage I did so without Her, and it was miserably apparent. Something that had once been a labor of love lost all the love. I haven’t taken the stage since. Over the last year, molehills have grown into mountains, and I’ve lost my footing time and again. So, I let more old loves go. I set out to conquer the flatlands, instead. I pretended it would be enough. Realizing that it is becoming significantly more challenging to write snapped me back from a comfortable haze of “fuck it, I’ll take the road already taken” complacency. It’s not enough. So, I’m diverging again. If it’s getting harder to write, then I will just write more. When I can’t find Her anywhere, I will just search harder, listen for Her more carefully, reach my hand out further, but more than anything, believe that the Sara who is different-than is worthy enough to walk in Her stead while She is gone. I might even acquire more hardware if it means it will guide Her back to me when she can’t see her way through the storm.
In September I will take the stage again. This time to tell our story, Her’s and mine. It might be a disaster, or it might be the talk of my lifetime. It doesn’t really matter which. What matters now is that I do it, that I keep telling stories. Whether I think I still have the chops to tell them “just right”, or I can only manage to puke the words out for someone to try to piece into something coherent, I have to tell them. Fancy robot parts or not, if I stop trying, if I stop telling stories altogether, she’ll never have a beacon to follow. If I surrender our voice, she may never return at all. I don’t know how it will all shake out, but I’ll tell you more about it soon. Perhaps you will join me on that day, and whether it’s a beautiful summit, or a glorious disaster, at the very least, it’ll be one more story to tell.
I’ll eat you up, I love you so.
The company that manufactures the vagus nerve implant has the word cyber in its name. This kind of “wearable tech” ain’t for pussies, so it just might have a home in Sara 2.0. Booyah. (Original SkyNet Matriarch, FTMFW.)
Stay tuned, turkeys. There are (many) more stories to come.
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.