October is Dysautonomia Awareness Month

Life is weird.

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Somehow I managed (on the first day no-less!) to remember it's Dysautonomia Awareness Month, and I started to think about what I would do for it. A few years ago I posted a "tid-bit" for every single day in October, while other years I just change my profile picture and offer a brief summary of my story while inviting questions.

But man, this year? This year I just don't. want. to talk about it.

And I'm not sure why.

I have been managing really well lately. The cardiac rehab has changed my life drastically and I am participating in my life more than I have in years... maybe ever. But sometimes it's like, I reach a point where I'm just tired of it. Not necessarily that I'm ashamed of it and my struggle or anything like that. But, rather, that there's a sweetness in people looking at you and just not knowing.

I played soccer today. It was tough but I am so fucking grateful for it and every day I have been able to do so. I fully realize this is huge in my journey and that many have not been able to make it this far. But here I am, the first day of Dysautonomia Awareness Month, bitching about how I don't want to talk about it. I'm DOING THINGS. And all I want is to just keep doing them. I want to do them until it's no longer a fight. Until my life is entirely full of the DOING THINGS and completely without anything that one would find in awareness month posts.

But that's just not how it goes. I am fully aware of how freaking hard I have worked and how lucky I am to have that work pay-off like it has but... it is just always. going. to be there. isn't it.

Maybe that's part of why I don't want to talk about it much this month. Because it's been such a mind-F for me. Maybe, without my even realizing it, part of me was subconsciously thinking this is how it could be from now on. That this level of living would continue, this taste of life would be all there was. And then I have weeks where I get my ass kicked in exercise and I come into contact with someone who is sick and I go right back to be absolutely terrified about catching their illness. It's a realization that, no matter how great I am doing, I'm always going to have to worry. I am always going to be susceptible. I am always going to potentially lose everything all over again.

In a weird way, I think being full on in the shitter was "easier" for me to handle. When there wasn't hope. Whereas now I have been blessed with brief moments in which I haven't really had to think about it. I still always have to plan, of course... have water with me, take my meds, gauge what I'm going to do in a day... but there have been moments where I've caught myself passing as some semblance of a relatively normal human person. Where I felt free. Unburdened. Like the entire world and my future was suddenly unrolled before me, all these new opportunities—to which I had sorrowfully said goodbye years ago—suddenly there, smiling at me. Eager. Just as happy to see me again as I was in seeing them.

I don't know. None of this is making any sense. And I'm just frustrating myself more because I really am truly thankful for these past months. I'm not looking a gift horse in the mouth. I just... I just want to be seen without it, is all.

I just want to keep having these moments where I can pretend or feel that maybe it'll be okay.

But that's just not an option. It's not. My condition continues to fuck up situations left and right... new ones now, too, that I am not even close to wanting to talk about. When all I want is to close my eyes and just be the girl on the soccer field, breathing hard because of a beautiful reckless living and not because her heart feels like it's about to break her ribcage and her lungs can't remember how to work or her legs collapse because they seize up without enough oxygen.

I just want to close my eyes and be the girl who sweetly thought, for a moment, that life had finally unfolded in beautiful, glorious possibility.

A Letter to My Body

Dear Body,

It wasn't you, it was me.

I know it sounds cliché, but I guess cliché doesn't necessarily make things less true. So, really, in complete seriousness:

It wasn't you, it was me.

All you have ever done was love me. Protect me. Aid me in self-expression and spirit. Without you I wouldn't have spent years on the soccer pitch feeling invincible. I wouldn't have gotten the closest I can to flying with gymnastics. I wouldn't have kicked Jared's ass in jousting in 5th grade. I wouldn't have been able to discover a new love for snowboarding, laugh properly using my whole self, run just to see how fast I could go. I wouldn't have been able to hug Joe before he died or take Niyadog on so many walks and adventures after waiting for her for 21 years.

It is not like we haven't had our struggles. Our other chronic illnesses are a daily battle now, I still often wrestle with my mind, and I know I get angry with you sometimes, but none of it is your fault. I think I pushed you too hard for too long when the only thing you have ever done is tried give me everything—and so much of what I asked for was so unfair.

It wasn't you. It was me. There were things about myself I didn't like, fears and feelings I couldn't handle. I wanted to be so much—everything and nothing at all. And the depression didn't help. My mind and it's miswiring. There was just so much I didn't understandbright and heavy colors or feelings or pains that built up and soon expanded or melted (I don't really know) into hatred. I was mad at you for not being what I wanted you to be, for what I thought I needed you to be. And I didn't know how else to deal with it. I thought if you and I could just do a little bit more—on the inside and the outside—things would get fixed. I thought that because I felt so ugly on the inside, that if I could be beautiful on the outside, some of that would seep through. That I would be happy.

And you tried. You tried so hard because you remembered all those summers we spent running through sprinklers and playing tennis against the chipped garage door. You tried because you loved the hike we took to the top of a 14,000 ft mountain, the boys we made swear during hockey. You tried because when we spent those nights in the backyard, kicking the soccerball against the wall, it felt like the universe had shrunk. That the culmination of time and stardust was this simple and beautiful moment: late afternoons (some laden with crickets, some heavy with the Colorado winter) dropping into dusk, dusk fading further until house-corner floodlights popped on, the constant often-rhythmic snap of grass beneath feet after a chip, or a particularly sound kick echoing against the mountains. The stars and the night and a girl and her dreams.

You tried so hard because you wanted it back. You wanted me back. But I hated you. You had done nothing but help me chase my ambitions, love me, and yet I hated you because I was in so much pain.

Even more, you tried to tell me. So many times in so many different ways, and I didn't listen. At first, gently prodding me about our limitations, how they aren't bad—how heeding them would mean we could do more together. That if we took care of each other we could take on the world. You tried so hard, prodding giving way to pleading, but I didn't listen; I didn't want to hear it. So you continued on as best as you could. Struggling to give me everything when I gave you nothing.

I am sorry.

It is a love I didn't completely understand. One I still don't. Especially considering how I spent so much of my life destroying you. And even though I have tried my best to remedy this, some days I still find myself saying things I think I mean. I still get angry or hurt or I am overwhelmed with feeling. And you wait patiently, knowing I will find my way back. Because the truth is you are powerful and so strong and maybe that scares me a little sometimes.

So, no matter what, I will fight. I have fought for 9 years and I will keep fighting just as you have fought for me. And I promise I will keep trying to listen, even if it's hard for me to hear at times, because all of my favorite memories exist because of you. As are, I know, all my favorite memories to come.

Love,
Sarah