The really awful MD scare

So, as I’ve alluded to a couple of times, I actually spent about two months this summer genuinely thinking I had muscular dystrophy and was dying, which was, as you might have guessed, pretty shitty. Why did I think this? Two reasons. The first is that that’s exactly what it felt like. The second was that a doctor basically told me that was the case.

After a few weeks of getting progressively weaker I went to a doctor, who initially said hepatitis(?!), but when the test result for degrading muscle was positive he said MD was very likely and that he was referring me to the ‘muscular dystrophy clinic’. I think this was an ill-advised thing for him to do both because it caused way more freak-out than was necessary, and also because in the end there wasn’t even such thing as the ‘muscular dystrophy clinic’, it was just the neurological clinic at the University of Iowa hospital, to which a referral sounds way less scary. Why he didn’t just pass the buck and say to go get more tests at a specialist who would figure out what it was (when obviously there were more possibilities than hepatitis or MD), is rather inscrutable.

The specialist in the neurology clinic after very few questions said MD was very unlikely and asked if the first doctor hadn’t really talked to me much (he hadn’t). His exact words were: “maybe there’s been another case of someone who used to play roller derby developing MD, but I doubt it”. So that was a very liberating moment.

Though honestly I’m weirdly glad it worked out the way it did because, unpleasant as those months were, I can safely say that there’s nothing like thinking you’re dying to get your head on straight and your priorities in order. Plus, instead of feeling devastated by the diagnosis of a pretty awful autoimmune disorder I’m still nothing but pleased with this diagnosis; I feel like I’ve been happily floating along ever since I was finally able to go the specialist and get the proper diagnosis (nearly two months passed between the doctors).

That surreal couple of months also completely cured a lingering and malicious depression I’ve tried to kick for years. What I thought of as ‘the big stuff’ has been put in such an entirely different light that I can’t see it ever bothering me again in the same manner, and all the little everyday stuff has blossomed into enough joy and interest to fill up all my mental space. A really powerful reminder to enjoy whatever life I’m experiencing and to not sweat the small stuff (because it’s all small stuff).

2 thoughts on “The really awful MD scare

  1. “You will lose everything. Your money, your power, your fame, your success, perhaps even your memories. You looks will go. Your loved ones will die. Your body will fall apart. Everything that seems permanent is impermanent and will be smashed. Experience will gradually, or not so gradually, strip away everything that it can strip away. Waking up means facing this reality with open eyes and no longer turning away.

    But right now, we stand on sacred and holy ground, for that which will be lost has not yet been lost, and realizing this is the key to unspeakable joy. Whoever or whatever is in your life right now has not yet been taken away from you. This may sound trivial, obvious, like nothing, but really is the key to everything, the why and how and wherefore of existence. Impermanence has already rendered everything and everyone around you so deeply holy and significant and worthy of your heartbreaking gratitude.

    Loss has already transfigured your life into an altar.”

    Jeff Foster
    Life Without a Centre

    xo Helen


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