Tuesday, August 8, 2017


Since my diagnosis and prognosis began to sink in, I've found myself looking at life a little differently.

While my illness isn't terminal, it struck me that this could be the healthiest I could ever be in terms of mobility. And that's not to be negative, we've known for a while that my disease is progressive, but now that I've learned exactly what could happen to me at any time, it really hit me. I don't know what future treatments will hold, and what streaks of improvement I might be lucky enough to have, but I do know that I'm living with a progressive disease. And I'm beginning to become aware that one day there will likely be a lot of things I can do right now that I might not be able to later.

So no, I'm not planning on going skydiving, but I find myself saying yes to things I would have said no to out of anxiety or because I knew my illnesses would cause trouble with it. Before I start treatments that may help my mobility and slow progression, but may cause troublesome side effects, I'm traveling as much as I can to see friends. I find myself wanting to explore. I'm trying things I would normally shy away from. I find myself wanting to make as many unforgettable memories as I can.

When I'm asked to do something that's out of my comfort zone, mentally or physically, I get struck by the fact that I might never in better shape than I am right now. And it's a humbling thought. But I've also found myself sounding like a loser and saying "YOLO" out loud several times. For anyone who somehow doesn't know this acronym, it's you only live once. Hopefully I'll get access to treatments that will that will make me feel healthier than I feel now, at least for periods of time. But in the meantime, I'm trying to live by YOLO.

I'm an overthinker. For everything. And I think in part this is teaching me to let loose a little. And while that's caused by something not so positive, it makes me feel positive. And I think that will take me further.

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