October is Dysautonomia Awareness Month

Life is weird.


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 my husband gets sick and I go right back to freaking out about catching his cold and blaaaaah. Bless him, he tried to make the point that I'm doing better and that I wouldn't have to worry about contracting anything as much... but that's just not true. 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 so much of everything 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 OK.

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. I just want 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.