I was the healthiest person I knew, until, suddenly, I wasn't.
A few years ago, my health took a hard downward turn. I had to suddenly stop working and quit my career, move back in with my family, cease being a functional member of society, and face the fear of the unknown as I underwent test after test, trying to figure out what was wrong with me.
It turned out that I had Mitral Valve Prolapse Syndrome/Dysautonomia: a condition involving the heart and autonomic nervous system that, despite being described as "benign" (that is, not life-threatening) can nevertheless turn lives upside-down. Sometimes, I couldn't move; I couldn't think; I couldn't breathe. I was in some form of torture constantly.
I may not have been the healthiest, but I was still the most optimistic person I knew. So I did what I could to kick ass.
I don't think there's such a thing as “overcoming” a chronic illness or disease for which there is no cure. Suddenly having to deal with serious health problems is like getting hit by a tornado; illness uproots everything in its path, leaving a landscape of destruction. Not very cheerful, right? Everything you knew to be safe and sound is flung aside and it feels like a house has fallen on top of you – what my experiences have taught me, however, is that you can rebuild. The struggle is realizing that you have to build a different house now; you can't live in the same place anymore.
Things can't be the way they were before, but you know what? That's okay. It's okay that it's hard, it's inconvenient, that it pops up at the worst of times and is tough to explain, because there's no other option, to me, except going forward.
I knew my life was changed, that I was going to face serious challenges, risks and sacrifices. I knew I couldn't go back to before – that's one of the sacrifices – but no matter how much my body fails on me, I'm still me. Part of me got lost, stolen, ripped away, whatever, and at my worst I was – and on bad days, am – a shell of myself, reduced to laying down, doing nothing but staring, unable to work, keep a single train of thought for more than a few seconds, let alone hold a conversation (or write, which is honestly more important most of the time!). But illness can't really take away from who I am. It's part of me, too, and you better believe I'm not gonna let it bring me down for good.
I knew my life was changed, that I was going to face serious challenges, risks and sacrifices. I knew I couldn't go back to before – that's one of the sacrifices – but no matter how much my body fails on me, I'm still me. Part of me got lost, stolen, ripped away, whatever, and at my worst I was – and on bad days, am – a shell of myself, reduced to laying down, doing nothing but staring, unable to work, keep a single train of thought for more than a few seconds, let alone hold a conversation (or write, which is honestly more important most of the time!). But illness can't really take away from who I am. It's part of me, too, and you better believe I'm not gonna let it bring me down for good.
A quote that I happened across on an MVPS support group really stuck with me:
“We are stronger than healthy people, because we are always fighting.”
It's a constant struggle, which my default super-optimistic-forever outlook on life has helped me deal with. My life changed because my body failed; I changed my life because that doesn't mean I'm a failure.
I go after the things I want; I recently packed up and moved far away from the safety of home to dive into a big, busy city with only a few scattered friends/family to pursue a new crazy, demanding, awesome career – because I want to. I just have to do it my own way. Sometimes that means defying convention – like working at midnight, wearing sunglasses in department stores, or taking any number of odd paths because I have to in order to make it. But hey, I've always been a weirdo. Sometimes I can just get away with it easier due to being an artist. We're supposed to be eccentric.
I go after the things I want; I recently packed up and moved far away from the safety of home to dive into a big, busy city with only a few scattered friends/family to pursue a new crazy, demanding, awesome career – because I want to. I just have to do it my own way. Sometimes that means defying convention – like working at midnight, wearing sunglasses in department stores, or taking any number of odd paths because I have to in order to make it. But hey, I've always been a weirdo. Sometimes I can just get away with it easier due to being an artist. We're supposed to be eccentric.
Like so many other illnesses out there (Chronic Fatigue Syndrome and fibromyalgia come to mind), my condition isn't always obvious – people don't always realize I'm having a hard time or understand what it means to have MVPS. It's kind of like wearing your heart on your sleeve, always vulnerable. Deciding to open up and write about my life, struggles, and experiences publicly, with my own name, is kind of like deciding whether to publish objectionable material under my actual identity or a pseudonym (not that I'd know anything about that... or would I). I have a voice. I'm not looking to be a talking self-help book, even though my eternal optimism sometimes makes me one, but if I can connect to just one person -- I've done my job. ♥
