Handwriting on the Wall

l grew up in Catholic schools, where nuns elevated penmanship to a notch just below godliness and cleanliness. Angels had beautiful handwriting. Composition notebooks could be works of art.

I never got an A in handwriting, though not for lack of trying. I labored over the wide-lined pages with my pencil tightly gripped in my right hand, trying to glide within the lines and fill them with wispy loops. As the years passed, I accepted my fate as an average scrivener, convinced that writing need only be clear enough for people to decipher. Besides, who wrote by hand anymore?

But when my mother passed in early April 2022, I found myself back to paper and pen, signing forms, writing checks, and sending thank you notes. It dawned on me then that my handwriting had become illegible and moreover, that the physical act of pushing the pen across paper had become difficult, as did typing on a keyboard.  

By then I’d already experienced a litany of health issues that doctors readily attributed to aging or some other innocuous causes. So when I joked to my doctor that my writing recently resembled the scribblings of a terrorist, he just laughed and shrugged.

***

 Over the years I’d managed to escape major health scares, blessed with a relatively clear family history and reaping the benefits of some good habits. Though coffee, chocolate and wine were guilty pleasures, I’d generally watched my weight and diet and exercised consistently - running, swimming, yoga, weights, boot camps. I kept my annual physical appointments and did all the age-appropriate testing.

Picture of health, the doctors said.

But in hindsight the clues were all there. Persistent and puzzling digestive issues. Anxious jitters. Insomnia and fatigue. Loss of sense of smell. Softening voice.

Some symptoms were quirky and at times funny. When I walked my right arm wouldn’t swing and my gait shuffled, and I’d had a few falls. I look like Tim Conway in an old-man skit, I joked with my husband.

Curious, I turned to Google. I typed “aging” and “handwriting” in the search box and up popped “Ten Warning Signs of Parkinson’s.”

I gasped. Parkinson’s? Unlikely, I thought. I knew so little about Parkinson’s beyond its stigma as the shaking disease. I had no family history of that. And I was only 62.

I clicked on the link anyway and looked at the list.

I had all ten signs.  Loss of smell – check. Jitters mimicking internal tremors – check. Shrinking handwriting – check. Reduced arm swinging, debilitating fatigue, weakening voice – check, check, check.

I tracked down my doctors and eventually landed in a neurologist’s office.

“What brings you here?”  he asked.

“I Googled my symptoms. I think I might have Parkinson’s.”

“Google diagnosed you?” he replied with a smirk.

 After some further discussion and a targeted physical exam, he talked about next steps.

From what I can see, symptoms if any are subtle, he said. Maybe just watch and wait and see?

There’s no diagnostic test for Parkinson’s, he added, just like there’s no cure. What we do know, though, is that the disease is caused by a lack of dopamine in the brain. Dopamine - you know, the feel-good neurotransmitter. What we can do is scan your brain to see how much you have.

Less than a week later I found myself injected with a tracer and strapped onto a table, my head stabilized by what felt like a sideways vice. For an hour radiology staff monitored the scanner as it passed back and forth over my head with deafening noise. When I sat up afterwards a young resident in a white coat looked at me plaintively. “How long have you been having symptoms?” he asked. His eyes said it all.

 Two days later the neurologist called. “Your scan results are consistent with a Parkinson's diagnosis.” I heard little else in that call - something about a drug called levodopa and returning to see him in three months. That was it.

***

I spent the next several months in a blur, not knowing what to do next. Shellshocked.

 I learned that Parkinson's is a neurodegenerative, chronic, and incurable disease. There are no days off and no remission. Treating the symptoms is the best medicine has to offer for now, and each patient has different symptoms. And contrary to popular belief, those symptoms do not only impact motor skills, like tremors. There’s a long list of nonmotor symptoms that affect quality of life.

Everyone had suggestions. Find a specialist, one who’d accept my insurance and had appointments sooner than a year out. Learn about treatment options and play whack-a-mole with a variety of drugs designed to alleviate symptoms, but which left me feeling sedated instead. Get therapy – physical and mental. Look for a support group. Move – boxing, ping pong, yoga – anything to strengthen and stabilize. Eat better. Sleep more. Stay social.

All of that on top of confronting the new realities of daily living. I’m never going to wake up in the morning and feel good again, I said to my husband one day. I was on some shaky ground, literally, and my dominant right side was taking a big hit.

Everything was harder and everything was slower, if not impossible. Brushing my teeth, buttoning a shirt, drying my hair, cutting food, using utensils. Walking down stairs, walking on sidewalks, especially near busy streets or icy patches. Writing and typing - a cruel fate for someone who worked on that craft.

One day, about a year into my diagnosis, I sat on the porch steps down the shore and watched my granddaughter and her mom pedal off toward the ocean, bike wheels spinning and handlebar tassels flying. They’d turn right down the weathered boards, on their left surfers catching a curl while a salty mist tinged the air, and on their right, rusty promises of amusement – a wooden pony ride, pinball flash and ping, fortune from Madame Marie – all faded and worn, like me.

That was supposed to be me in these later years, I whispered to myself, tears of grief slipping down my cheeks.

I’ll never ride my bike again, I thought. Never dive into the ocean and ride the waves. Never hold my grandchildren - or even walk with them - without worrying about falling. Never be able to keep up.

***

For a time fear consumed me, as I began to edit my life as I’d edited my words for so many years. Slow down, my body was telling me. Embrace what’s unfolding instead. No need to do ninety things in a day anymore; one, or none, can suffice. Take the mid-day nap when you tire. See the roses you can no longer smell - and the sunrises, eclipses, and baby smiles too.

The accepting, the sorting, the reimagining is all still messy. And I know the days ahead will be challenging. But I’m learning to see life through a different lens now, with constraints but also with a curiosity that comes with walking in a changed reality, wondering how I can make this new space beautiful.

I’m grateful for my people - husband, children, grandchildren, and other relatives – for their strong arms to prop me up, shoulders to cry on, and words to heal. For hands to hold and family moments to cherish. For sunlight streaming through the windows mid-afternoon while I nap. For dictation tools that help me continue to write. For a left hand that’s doing yeoman’s work, though half the job at twice the time. For the out-of-the-blue phone call that reaches me on a quiet day, from a voice that says, ‘been thinking of you.’ For the spiritual strength I'm able to draw from my Franciscan family and friends, who remind me through actions and words that we never walk alone. For the chance to see life play out on a different reel, unveiling new opportunities for healing.

And for this:

Each morning before dawn, I pour a steaming mug of coffee, gather my blanket and head out onto our small deck, where I sit, pray, and watch the light break the horizon.  Still here, I whisper to myself.

You’re still here.

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