Most of Me
Surviving My Medical Meltdown
Robyn Michele Levy
She's in her early forties. Fairly healthy. But something is going wrong with her body. She sees a specialist.

The doctor's verdict: "You have Parkinson's disease. Early-onset Parkinson's. You're in the early stage."

    "Are you sure?" I ask, clinging to the finest thread of hope, tears streaming down my cheeks. "Could it be something else instead of Parkinson's?"

    Dr. Stoessel hands me a box of tissues and says, "Why? Do you want it to be something else? If it were something else, it would be worse."

    I can't imagine anything worse than this, but I'll take his word for it. He is the expert, after all.

"Do you want it to be something else. If it were something else, it would be worse." And so Robyn Michele Levy meets one of the main companions to her fearsome new life. That is, those who explain, run and treat these diseases. Those who are required to be curt, and distant, and careful: the professionals.

This is the story of her sickness journey, and, for many readers, it will become a primer. Not exactly her worst fears (not yet): "Unsettling thoughts of drooling, diapers, and wheelchairs loom large." (For those of us already in wheelchairs there are other thoughts that may loom as large. Don't ask.)

No, at the "early-onset stage," it's troubles in walking the dog, "lumbering," "my left leg dragging behind," her left arm "frozen at my side." Trying to do the laundry, chopping vegetables, putting on shoes, flossing teeth. So many things that used to come so easily. Now so strangely difficult.

Levy does not want to make all this too heavy, so she spices it up --- as best as she can. She tells of her therapist's order that she march around her house, march, rigidly, like a soldier, to keep her limbs from going rigid: "But I march to the beat of a disabled drummer. And no matter how hard I try, I lurch to the right like a spastic soldier --- perky but jerky. I'd make a sergeant major cry."

And though she's trying to make us laugh, she too might make us cry when it is revealed a third of the way through Most of Me that she not only has Parkinson's, she's got breast cancer. Because by this time we've become more than a little fond of her despite her temper tantrums (directed at husband and daughter before she figures out why her body is going so strange on her); because of the sheer dark of her new world (waiting rooms with twenty chairs in tidy rows, all of them occupied by breast cancer patients and their loved ones) .... and her often brave sometimes over-the-edge attempts at humor (Cancer Doctor: "You were diagnosed with Parkinson's disease eight months ago. And you have just been diagnosed with breast cancer." "At least I don't have testicular cancer," I reply.)

Sometimes it leaks over the side of the boat. It is as if Levy cannot control the reporter inside her. She worked as an on-the-air person with the Canadian Broadcast Corporation. And at times, the humor turns bleak, almost too much. She visits with Marg. Marg has had Parkinson's far longer than Robyn. Marg and her assistant are trying to make a chocolate cookie concoction. Marg grabs some crackers and with the loss of control that ultimately comes to all Parkinson's patients, spills them and the chocolate all over the counter.

"I watch her hand hovering over the pan, preparing to release the load. But as her fist unfurls, her arm jerks suddenly and the chocolate chips scatter like confetti. I leap into action, picking up the morsels that fell on the floor, on Marg, and on the counter." It's agonizing: Marg's mumbled words, her legs "tap dancing" (dyskinesia from her medication), and like a child she has chocolate smeared on the back of her hand and on her face. As Robyn prepares to leave, she asks Marg, "I'm in the honeymoon phase of this disease, aren't I?"

    Staring blankly at me, she slurs, "Yeah. Honeymoon phase."

We don't want our tales of woe to be too woeful, but sometimes they're hard to make flippant. Ms. Levy is trying to steer the middle course, but at this exact moment with Marg she has lost her sense of balance over what is happening ... over what is going to happen to her. She has put herself in a very tight spot, one where she is trying to be honest. Perhaps too honest.

There is a delicate art to writing about pain and sickness; disease and bodily deterioration. When she is with Marg, she is looking straight on into the mirror; she is looking at Robyn Levy somewhere down the line there; a portrait that might better have been left unpainted: to spare her; to spare the reader. That figure from the future, staring her right in the face, saying, flatly, "Yeah. Honeymoon phase."

--- L. W. Milam
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