"Your disease is progressing," my doctor told me last June. I stared at her. I didn't understand. I was a slow progresser. Slow on the slow scale, the last snail in the race. I envisioned slow being where I was for the next twenty years. I knew that didn’t make sense. I knew I was partly in denial. But I held on to that belief. It got me through. I felt that I was given that magical fairy dust that would freeze the disease in time within my body.
“What does that mean,” I asked? “How can you tell,” I said? She indicated the finger tap test on my right side. The amplitude was slightly less amplitudinal than it was before. It was subtle, she said. I shouldn't be overly concerned, she said. I was overly concerned. What’s the time frame generally for progressions from one side to the other, I asked. Two years, she said. Is there any timeline or data specifically based on women in their forties, or South Asian women? What is the baseline for determining progression from diagnosis to one side to the next? Diagnosis can occur at various stages so how is that baseline determined, I asked? There was no data or clear answers that my doctor could provide.
The answer I wanted was that I was special, I was different, I was unique. I was an anomaly. I would be that one person in the entire United States that did not progress past a certain stage. I was none of those things. It takes a while for bad news to sink in for me. I didn’t get into the college I wanted; my favorite ice-cream flavour was not available the one day I went the store, salted caramel, for the record; the dry hair shampoo I loved was out of stock at Target. Those disappointments hit me a few days later. I recovered. But this news hit me immediately. I felt it in my gut.
Parkinsons's started off on my left side, my less dominant side. I was grateful. I could still create the perfect winged eyeliner easily. I could snap my fingers quickly and loudly. Cutting things posed a problem, but I made adjustments for that. Who needs perfectly sliced mango cubes, right? I was able to type quickly, my right hand made up for the slowness of my left. I was lucky.
I didn't do everything I was supposed to in caring for myself. I didn't exercise consistently. I didn't take all my vitamins. I forgot to take medication on many days because some days I didn’t care. I ate the all the food my stomach did not like. Donuts, they were my friend. How many Krispy Kreme donuts can you eat in one day? Five. It was a delicious stomach cramping mix of glazed, maple, chocolate with sprinkles and a couple of blueberry donut holes. And I still progressed slowly. I was lucky.
I was a little shaky when I drove home after that visit last year. I immediately reached out to my community. I needed reassurance. A friend who had just had DBS told me not make too much of progression based on UPDRS assessment. It’s much more important how you feel and function 24/7, he said. I held on to that. I held on to that tightly until I started to feel my mouth tremor. I held onto that tightly until my right hand started folding into itself like the wilted flap of an envelope. I held onto that until I felt my tongue slur the letters and words I was used to speaking daily for years. I was not lucky. I had a long honeymoon period. But I was not lucky.
I routinely tapped my fingers throughout the following days, weeks and months. The more I practiced the more I would get better, right? I have dozens of video proving this not to be the case. After the last meeting with my doctor, I lost my job unexpectedly. I had turned in my resignation months earlier but informed management I'd stay until December. I was going to be an artist, a writer, a photographer. I was going to use my hands daily to create magic. To create work that had meaning.
Instead I did nothing. My right hand became worse and worse. Medication sometimes helped. Mostly it didn’t. When I couldn’t open my mail as easily as I used to, I sat down and had to take a deep breath. I was no longer the fastest envelope opener this side of the West. It was a title of pride, how quickly I could open up mail, stuff an envelope mailer, and put a stamp in the perfect place, geometrically aligned. I remember one afternoon when I volunteered for a small non-profit that did tours educational tours Laos, Vietnam and Cambodia. Spending the afternoon stuffing envelopes was easy, was pleasurable, was satisfying. I felt like Gerry on Parks & Rec. For every four envelopes I stuffed, someone else stuffed one. The praise of "Sree, you're so good at this" made a little warm curl unfurl in my chest. Something so simple, so basic. You'd think I’d gotten into Harvard. Or created the perfect foam leaf on a white almond milk mocha. But it was just stuffing envelopes.
These basic tasks can be some of the most pleasurable. That coordination of hand and eye and movement sends a tingle of delight up the spine. Now I realize how complex these movements are. Opening up the mail box is an exhibit in dyskinesia, stiffness and twitchiness. Grabbing the mail, my hands turn into a warped origami crane. I cannot do these tasks easily anymore. It's astonishing to realize that so much of what we do in life is made up of small movements and moments. There aren't many big ones.
I had to accept that I was not what I used to be. I had stuff that envelope much more slowly. And then I remembered no one really uses envelopes anymore No one writes letter or sends actual invites anymore. I turned my gaze to the left and looked at my computer and at my fancy, almost silent keyboard. Another challenge for another moment, keystroke by keystroke.