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. ♥
Great blog! I have MVPS. I also do things my own way, even if that means I have to work evening shifts or go shopping and run errands in the evening. Late afternoon and evening are my good times whereas mornings can be hell! I also wear sunglasses in stores.
ReplyDeleteConnection made - You have done your job. :) From one MVPS fighter to another, very beautifully said. Peace, healthy vibes and warm wishes this holiday season.
ReplyDeleteAmy:
ReplyDeleteRock on! Like you, I'm living with MVPS/dysautonomia and I too have struggled with whether or not to write publicly about it. I have mentioned it a few times on my own blog, but I was myself gearing up for a much more obvious push on this topic when along comes your blog, too!
As you know, some days are better -- and even MUCH better -- than others. There have been times when I've had little trouble at all, and then the past few years have been especially difficult for me. Optimism is indeed one of the strongest suits we have.
I will keep an eye on your blog, and please let me know if you'd like a guest post or two. Cheers!
Jennifer:
ReplyDeleteThank you so much for the comment! I certainly do know how that is. Once I get rolling, I'll definitely consider a guest post or two. MVPS writers unite!
Wow, I actually stumbled across this on Tumblr and I almost feel like crying **laughs**
ReplyDeleteI'm sixteen and I've been diagnosed, too, only about two months back after a few years of symptoms. I was a little scared but just knowing that there was a name to what I was experiencing made me feel loads better! My mom thought I went a little loony when I smiled as the doc told me but it just mean that there are others with this just like me and I felt... well I used to feel alone before and suddenly I knew that others are going through it with me. I may not know their name but I'm not alone.
This whole blog just made my year.
Maritza:
ReplyDeleteOh gosh, now I almost feel like crying -- thank you so much! I know what it's like to be going through health issues and doctor visits at sixteen, too -- I had a ~mystery illness~ that came (and stayed, and stayed...) and went, only to resurface years later, worse, which is when I discovered it was MVPS. Then, it wasn't for awhile afterward that I even discovered how many other people were going through the same thing.
Good to know my Tumblr is good for something other than TV spam!
hello Amy! Glad to come across your blog! i also have MVP/D. I notice my symptoms go wacky when im in a very stressful situation. Its good to know Im not alone with this MVP/D thing. Lets all stay strong and help each other out! we can do this! :)
ReplyDelete