When I was young I loved to run. I still love to run, though now I only run in my dreams. When I say running, I mean sprinting. I was born with Autonomic Failure, so running any kind of distance was distressing and took a long time to recover from. Racing for me – like swimming or skating – was a pure moment of freedom. It was escape, literally. But there is always a line lurking before me. There is a point beyond which I can't proceed.
Imagine lining up, adrenaline snaking through your limbs. Imagine the start, explosive and focused. Your stride evens out. You hit top speed. You relax. But within seconds, rapid-fire, your competition kicks in – not the other runners, but dizziness, confusion, panic, tingling, and the feeling you are losing consciousness. Your brain and lungs are deprived of their function even as your legs swell and pump, milking whatever oxygen remains. You are running, still, maintaining your pace. But your ability to think and sense disappears. Your world closes in quickly around you. You are sprinting alone in a tunnel. Time slows down and the finish line edges further and further away. Your toes are numb, as if the tips were missing. The white lines painted on the track, the texture of the surface, the sound of your spikes tapping the ground – every sensation turns against you and becomes an enemy. You are beating against them. You are stamping them out. The finish line looms alongside oblivion.
I realize now these brief terrifying sprints were necessary. Each sprint was a test: a test of my alive-ness, which waned and waxed inexplicably. A test of the physical and mental limit imposed by my disease. Each sprint was a blow to the fuzzy shroud that descended around my brain to taunt me.
I realize now that every endeavor I have undertaken was approached in exactly this fashion – in desperation, at a dead run, hoping to last to the finish. Every endeavor was a battle against my recalcitrant brain. Every action was an attempt to jar it, to keep it moving. I was afraid to stop moving. I feared if I stopped, I would descend into the quagmire that pulled at every step.
I remember my middle school track coach, Mr. Gottfried, screaming at me across the oval during distance training because I could not keep up. "SPELLMAN!! WHAT THE HELL IS WRONG WITH YOU?! YOU KNOW DAMN WELL YOU CAN RUN!" I was able to place in sprint races, sprint relays, and the triple jump. I just didn't make sense. I don't make sense to anyone – including doctors.
In January I will qualify for health insurance for the first time in 25 years. Hopefully I can approach it at a steady jog and avoid wiping out on the turns. After failing for 48 years to get proper care from Health care providers for "invisible" conditions, I am not optimistic. I am not even sure I feel like trying anymore. I will never win. But I have to line up. I have to compete. If I don't, I am finished.
BTW I forgive you, Mr. Gottfried, for screaming at me. Maybe I should even thank you. Even though I wish I could have got help, In some ways I am thankful I did not. I feel fortunate to have done all the things that I am not supposed to do.