The interaction is the same. Step in line, wait by the ropes, wait your turn. Up to the counter, name, date of birth, sign the electronic pad, take the white paper bag in your hands.

The pills are different. Carbidopa-Levodopa. Clearly the person behind the counter knows what you have. The diagnosis is deducible, unmistakable, perhaps opaque to the uninformed, and clear as sun in sky to those who know.

You take the bag, look at the label, tears come up into your eyes. Welling up as they say. You turn and thank the pharmacist and hope that he doesn’t see your waterlogged eyeballs. Clutch the white bag and limp off into the parking lot.

This means I really have it. This means there isn’t some mistake. I respond to this and it’s for sure, not some quirky mistake or physical manifestation of a psychological problem. I join the ranks of the Sinemet® crew, I am not so different anymore, losing the status of young onset, less affected and skirting past the true, debilitating dyskinesia.

How’s your leg, Bert? How’s it GOING? Hey I haven’t seen you walk so fast ever before. How’s the leg? How’s everything going with, you know. What happened to your leg? How’s your health? Oh, I’m sorry you’re limping, did you injure it? Feel better! Whatever it is, hope it heals soon! How’s the leg today?  Your walking looks good today.

Body as public property for commenting.

My friend on the West Coast wrote to say she couldn’t drink her wine one night, because after 20 years she could smell the wine again. She just sat, smelling, overwhelmed by the complex scents and memories and she cried salty scentless tears into her glass. She is doing a clinical trial of plasma infusions and she thinks she may be in the experimental arm, not the control group. To smell my daughter’s skin, my lover’s hair. To wince at the summer garbage in New York City. To describe the coffee brewing by the scent coming up from the steam. To know the gas burner on the stove is on, but unlit. That would be a treat, and I would cry salty scentless tears into whatever vessel I stood over.

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Rebecca Miller, PhD, has attended the WPC as a participant and presenter.  She was part of the WPC 2016 Program Committee. She lives with Parkinson's disease. She is currently Assistant Professor of Psychiatry; Director, Peer Support & Family Initiatives, CMHC at Yale School of Medicine.

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.