For those who are injured or live with disease, simple things become hard and normality is the goal. For Richard Chow, it starts every morning with navigating the ten feet between him and the pill he must take.
I am always a little disoriented. The bedroom is completely dark. The only movement, perhaps, is my dog needing my attention. She sits with her nose directly opposite my nose. If I am unresponsive, she will lick my face or hand – whichever is available.
My neck always hurts. A permanent crick greets me every morning now.
I don’t want to move. I need to urinate. But I have now trained myself to ignore the urge because the moment I try to stand up, I will be reminded that I am diseased.
The routine is the same every morning. Edge to the side of the bed. Then, roll my legs off, using their weight to allow me to push my torso and head up with my arms. Sit there for at least a minute, maybe more. Try to stand. More often than not, I will stumble and fall forward as though inebriated, bent over as though gravity has been pulling my body toward the earth for 80 years. I will be rigid and sore – more so than the day after completing a marathon.
I should not be slowing down like this. I am only in my 50s. I should still be competing in triathlons, as I did only a few years ago. I should be riding my bike to work each morning. Instead, I am forced to reimagine a future profoundly different than the one I had hoped for. Parkinson’s disease does this to you.
The bathroom is 10 feet away, just through the walk‐in closet. There is a plush runner with a modern motif that connects the bedroom to the bathroom. My ten milligram morning dose of levodopa awaits me with ten other medications. Levodopa is the magic pill that will fool me and others into thinking that nothing is wrong. It will allow me to function.
But I will not move, I will not stir until I can finally summon the volition ‐ to rise, to push, to struggle, to motivate, to stand. This will never happen quickly, not anymore. Much more is required – a conscious thought, a commitment, a reminder, guilt, anger. An hour will go by. All of this will happen – just so I can move those ten feet to begin another day.
With a Perspective, I’m Richard Chow.
Richard Chow is a Distinguished Career Fellow at Stanford. He lives with his wife and two daughters in the Bay Area.