It’s strange. I’ve been diagnosed with a progressive disease for nearly three years now and yet every single time it seems to take a significant turn for the worse, it seems just as shocking as that one night in September when I first found out. I should have known this was coming. Actually, I did know, but it just so happens that there is no real way to prepare for the way that it feels. So, here I am. Feeling it, and it’s absolutely horrible. I’m a three-year old kid who has lost their parents in a giant crowd of looming figures, whirling around and filled up to the brim with fear and panic and dread. Again, this isn’t a loss you shouldn’t have seen coming. It was clear as day, just as the many more in the future will be once they’ve hit me with enough force to knock the wind right out my chest. Every damn time.
Optimism. I think it’s something we all strive for. Not many want to believe that we live in a world that is filled with a wide array of evils, even when we know it to be a fact. We don’t want to believe that bad things happen to those who are good or innocent. Yet there is no denying that these kinds of things happen all around us every single day and it hurts. I mean, it really fucking hurts. We can’t just reason our way around it. It simply does not make sense.
And this is sort of how I’m feeling in this very moment. I’m sitting in a coffee shop across from one of the few friends who has never seemed to give a second thought to coming to my aid. I haven’t really said anything yet because, well, if i did I fear I might explode into a puddle of tears. I’m grateful, though, for these friends and acquaintances who recognize the severe nature of the feelings that come with existing in this sort of limbo, facing them alongside me without complaint nor question.
Yesterday I cried openly to a friend, finally able to release some of the built up emotion from behind, as the man from the coffee shop down the street from my home says, my sweet smile. That same set of teeth that flashes at strangers in the halls of the hospital I spend a little too much time in these days or that fiercely attempts to blockade the river of tears dammed up just behind my blue eyes. Existing in this way is not like having a cold nor is it like having an injury – with those come the hope, sometimes the promise of recovery. Chronic illness is another beast entirely. It’s all day, every day – something you just have to endure more than you fight. There is no escape from the constant pain and large array of grueling symptoms and I am, in turn, forced to create my own source of light in the darkness requiring you to build up a strong heart and resilient mind. It’s a world unlike any other – one of constant loss and grieving, of seemingly impossible feats, and incredible fear. It’s experiencing all of this on repeat with a societal expectation that you should “get over it.” I could continue to complain about the atrocities of living a such as this, but I won’t because even though it is exactly what I have described above, it is has also been the reason I have met the people I consider some of my closest friends, the reason I seek to better my relationship with God on a daily basis, and the reason I have been able to become the pretty awesome human being I am today. It’s the reason that through everything I have been through, I am able to take a step or two backwards and find what good, light things lie hiding in what so easily is mistaken for dark and hopeless.