Pain is a companion. It accompanies me when I rise, only allows brief privacy to shower, and returns with every step, turn, and bend. I tell myself this journey is temporary; not because there is a magical future when I’ll rid myself of the second shadow, but that I now have tools and medication to dim its presence.
I can cope with discomfort, lost sleep, and isolation well enough; but chronic illness’ true crime is stealing life from beneath my feet. The past few years, it feels as if I’ve struggled to gain adequate footing, drifting from one career to the next. If my trajectory seems erratic from the outside, I can’t blame you. I’ve been guided by illness more than almost any other force, every day rising with a hope that I’ll be able to survive and find meaningful work while clearing a trail through the undergrowth of pain and fatigue.
A new chapter is slowly unfolding before me. I’m cautiously optimistic that the fresh opportunities I promised myself in Denver will materialize, but as I embark on the next adventure, it’s important to stop and rest. To document who I am now, before these moments become shells of memories, too.
Recently, I allowed several ideas to drift into the unmapped, liminal space that exists between states of thought. Why, I asked myself, am I so comfortable shaping, perfecting, and releasing a new idea for the world?
Daydreams sheared rough edges off the question. In a moment of striking clarity, I received my answer.
I’m the audio engineer, who despite using hearing protection most of my life, suffers from debilitating tinnitus; yet have assisted in the creation of many beautiful melodies. I’m the photographer who, limited by mobility challenges, can no longer actively chase light but dreams in Kodachrome. I’m the software consultant who types painfully, thanks to arthritis and a rare genetic condition known as Ehlers-Danlos Syndrome. I still believe those making technology can change the world.
Ask why starting is second nature, and I’ll tell you this. I’ve never met a challenge, an illness, or obstacle so great it cannot be scaled. If I’ve survived this long, starting each time at the bottom, then I have few, if any logical reasons to be afraid.
Regardless, I’m terrified that opportunities to practice my craft could be taken away at any moment. Such uncertainty can only arise from playing a game of professional jeopardy, except more dangerous than your average workplace risktaking, since everything could vanish in an instant. Especially in those times, it’s important to realize how far I’ve traveled: my name is on records that will persist and I possess an expansive trove of photographs from my years in Chicago that are not yet published.
For the oddsmakers, I’m still a man who bargains with life at every turn and has yet to lose.