“Your hand is shaking,” says a well-coiffed brunette of a certain age who, like me, is waiting, waiting and waiting for her car. “Can I help you?”
I smile – we’ve just been at a posh cocktail party for a children’s charity. “I have Parkinson’s Disease.”
“Would you like assistance?”
I dive back into my bag in search of my valet ticket. It’s nowhere to be found. Smile-less: “Thanks. I’m fine.”
Bitch. I bet you can’t find your valet ticket either. Yeah, the tickets are brightly colored and I know, I just know it’s in here. Somewhere. All of us have purses that are overstuffed with everything a child, spouse, friend or even we might possibly need. Finding all of the above within said purse-– well, that’s a little more troublesome. With or without a shaky hand.
“Don’t be nervous,” says the nurse as she sticks cold metallic leads around and on my boobs. “The EKG is just a pre-op formality. We have to do it for all procedures with anesthesia — even a half-hour meniscus repair…”
“I’m not nervous. I have Parkinson’s Disease.” Moron. I don’t need you to explain my non-existent nerves away. My PD presentation is textbook. And you’re a medical professional?
“Oh, I thought you were scared.…” Ding Dong. The records are now in lifesaving electronic format so you can easily read them. Or that’s the theory at least. Once again, the yawning gap between theory and practice — in medicine as elsewhere — presents itself.
I know that I need help. A lot of help. On many levels. I’m just not ready to accept that I need any of it because of my Parkinson’s Disease.
“It’s cold outside,” says the manicurist in broken English as she moves her attention to my trembling left hand. “But you’ll warm up soon.”
I check my phone. Google Translate offers me no Vietnamese characters for Parkinson’s Disease. I anchor my elbow on the side table and steady my digits as much as possible. We smile at each other.
I accept the manicurist’s best intensions – and the sliver of hell to which she’s relegated me. “Yes, I want the same red on my hands and toes. Thank you.” I return my attention to my phone. She holds my left hand tightly as my nails begin to shine with Big Apple Red. “bệnh Parkinson” is the best my phone offers. I’ll try that next time. I return to the same salon always; they may not understand my tremor, but at least they’re used to it.
“You should mention it to her,” says a too-perky-for-8:30am-mom acquaintance when I bump into her at a new – for me at least – beachside exercise class.
After I do so, the fit, pretty-enough instructor stands directly in front of me to demonstrate our next exercise. “You’ll do this more slowly.” Having given me my special instruction she returns to the middle of our merry band of middle-aged lululemon-wearing sweaters.
Yes, I’ll do everything in the class more slowly. Although the why of this is difficult to determine. It is hard to know where my lack of coordination ends and my Parkinson’s begins; exercising more slowly than the more graceful bipeds with whom I share the planet is nothing new. I certainly do not need a spandex-queen whose limbs cooperate naturally to make assumptions about how my PD is currently affecting little grace with which I started out .
“Oh, you can walk? For how long? How many miles?” Another mom acquaintance queries as we plan to make plans to socialize.
Hiking is a preferred way to socialize amongst the mommy set; we’re all multi-taskers at heart. Thank heavens I’m still mobile enough to hike in the state park near my children’s school or my social life would be relegated only to swilling Chardonnay. “Yes, exercise is imperative,” I inform her. April is Parkinson’s Awareness month, after all.
The following week we meet at the park and embark on the easier trail. “Oh, you can walk pretty quickly,” she says. “Bravo!”
We walk. I scan the environs and wonder where I could dig a shallow grave for this Size 0 without drawing too much attention. I want to regale her with a litany of other skills I retain: I brush my own teeth and even wipe my own ass. Further, I can even still parent and work.
But manners take hold of my tongue and I give a brief, polite overview of what actual PD resembles. Then we discuss everything from the weather to People magazine. We debate which color Pantone will name “Color of the Year”.
Somehow, we never manage to find the time to hike ever again.
“If you’ve seen one PD patient,” my movement disorder doctor says, “You’ve seen one PD patient.” Parkinson’s is an idiopathic, idiosyncratic disease. Its presentation is unique, distinct; everyone’s disease manifests differently. I’d prefer a more banal, predictable, curable malady; but this is not my path. I’m doomed to “quirky,” “unusual” – in all senses of those words – in every aspect of my life.
I miss the anonymity. I miss just being the dingbat holding up the valet line because of a Tenzing Norgay-worthy purse that obfuscates a valet ticket. I miss just being viewed as a klutz. I would love to once again have the choice of whether or not to disclose my chronic ailment.
I wear many labels; mother, wife, friend – the labels that fill my purse with valet-ticket- obfuscating stuff – employer, employee. Parkinson’s sufferer is just another one of the many. But it is the most troubling.
I miss being label-less.
“You’ve said that three times,” my husband tells me as we ready ourselves for bed. I do in fact repeat myself. Repeatedly. And I hear a tinge of fear in his voice – fear that it’s my disease, not just my packed ‘to do’ list. Fear that this disease will morph him from partner to caregiver. Fear that I’ll age into a tremoring, flat-affected shell. A fear that neither of us dares utter out loud lest it become a real possibility.
April 11th is both my mother’s birthday and James Parkinson’s. My mother doesn’t appreciate the mention of this tidbit when we talk on her 89th birthday. My voice remains strong – it’s wrong and careless of me to remind her of my disease when she can’t see me shake.
“So, how are you?”
“Mother, I know that you’ve seen those commercials.”
“Because my PD presents itself as a tremor, I’m less likely to suffer delusions down the road.”
“That’s good,” she replies. She masks her relief with a practiced nonchalance that only a graceful beauty who uses her parasol as a cane can muster.
Our discussion turns to the birthday celebration for which she must get ready.
“Happy Birthday! Have fun, Mother.”
“I love you, Amy-la.”
I see people shuffle along with the help of their canes and fear I’m looking at a version of my future. My symptoms are physical; my left arm tremors, my stairway descents are slower and slower, my bowel movements are as erratic as my sleep pattern. Thus far at least.
Victory! I finally find that valet ticket from the charity event without assistance. After I throw everything back in my purse – that tricky ticket had attached itself to my cosmetic case – I hand it to the valet with my left, tremoring hand — as close to that condescending bitch’s face as propriety allows.
My mind is intact.
I’ll take that.
I’ll take today.