In starting to write a book this year, I’ve gotten a lot of questions about who I am and what I’m about. I hadn’t thought of a novelist having a “platform” or “brand” before; I just thought I liked to make stuff up. But as I wonder what to put out into the world and why–which will be the words I will rely on that I can never take back–I have had to do a lot of questioning of what I should talk about. There are a lot of topics that matter to me (#blacklivesmatter #linguistics #homicide violence #publictransportation #zoukdance #travel to name a few) but few of which I am really qualified to speak. In posing a lot of life’s questions to myself, I still come up with the rather pathetic answer of “I don’t know.”
So in searching my history and my soul, I’ve wondered what parts of it will be relevant for the long haul, and which are easily forgotten. In that sense, I suppose I will only have time moving forward to tell me. Nonetheless, as I look back on patterns in my life, the one that strikes me today is how, at a relatively young age, I know a lot about chronic medical conditions. I use those words and they sound almost cold, but if I put it in more personal terms, I could say I know a lot about feeling sick, feeling at odds with the world, pain that lasts and lasts, tears that arise because there is no other way to cope.
I’ve been to a lot of doctors in my life and I’ve worked around them too. The funny thing is, the ones I’ve worked with don’t suspect me of being the one that is also currently someone else’s patient. “You’re so young–what would you know about bad knees?” or “You’re young and healthy, long-term care isn’t something you have to worry about yet,” or, my favorite, “You look great–just wait a few more years, then you’ll know what your body really thinks of you.” It’s such a strange stereotype that we have in society–that people who are young are assumed to possess vitality and full working parts, like a new machine.
Meanwhile, the doctors I see as a patient are often baffled with what to do with me. One chronic illness is plenty per appointment, as I’m told, yet what if I have four or five to throw at them? I often leave appointments feeling sorry for ruining their days with paperwork. My bathroom drawer looks like a pharmacy and I feel like a pincushion. I try to keep in mind that nothing imminently fatal has been thrown my way–that’s the beauty for now. But where I belong in the abyss between thriving and dying often remains precarious, in my mind. And never mind if I’m somewhere solidly in between. My position in less important than how I move from one end to the other. Will a bridge appear in the direction I’ve hoped for? Or will the next tidal wave wash me to the dreaded shore? Or am I doomed to remain in purgatory for the next fifty years?
It’s not good to complain in public; no one likes a whiner. There is seemingly nothing to complain about when you look at the world and you see all of the terrifying “could be’s” surrounding you, forcing you to count the blessings your twisted brain is all too eager to forget. So feeling grateful is an important part of staying healthy. But if you were to know the truth, my mind spends a good portion of each day wondering just how much energy one can expend to maintain a state of health that feels only marginally better than those who often are seen as unlucky. It’s hard to talk about what the problems are–they’re embarrassing and complicated and often misunderstood. But I wonder if, as I write, this crucial part of who I am will find the will to shine in characters that are more courageous than me. My hope is, they take life’s knocks and bounce back with a return kick to the gut, a killer smile, and great hair. My hope is that my “credentials” in life inspire characters that inspire me to climb the right side of the chasm.
swansong 