the healing muse

Volume 10, 2010

My Sister’s Diagnosis

Janyce Stefan-Cole

            I always assumed my sister and I would one day share a room again, as we had as kids when she was older and worshipped, unrequited, by me. We are nothing alike, and probably haven’t been from day one, so my need for her to be my role model and guide was likely misplaced. I was not aware of the idea of us pairing up again until I learned she was suffering from the neurological disorder known as Parkinson’s disease. There had been signs, building like blips on the radar as the enemy approached; denial until it was unavoidable to her and everyone else in the family that something was wrong.
            Like my semi-conscious assumption of us in twin beds again, in a room somewhere (an old people’s home, assisted living facility—I never got that far), the symptoms lay undercover. Her tennis serve was off, the left hand not behaving as commanded; a fork in that same hand not consistently receiving confirmation from hand to brain (or the other way round) that it was in place and operational—all of this subtle; melting ice no one is paying attention to; creeping bits of information the mind does not know how to process. What name does one give to a misbehaving limb, a serve off for no apparent reason? It was seeing her walk towards me on 66th Street in Manhattan that finally made me speak up. We were meeting our colorful old Aunt Ozie and kindly, if dour, Uncle Bill for lunch, and my sister stooped, her gate mincing like a pony unsure of its footing. I blurted out, “You need to take yoga or something; your posture’s gone to hell!”
            I don’t remember her response or much about the lunch that day. She was too young for Parkinson’s, typically thought of as an old man’s disease. She is tall and beautiful. That old lady stoop did not go with her five-foot-ten frame. It read like an insult. I do know she picked up the check for lunch; my relatives and I were no match for her generous financial standing. That wealth would soon serve her well, bringing movement specialists and physical therapists into her home to re-teach her how to walk, to use her limbs in ways that offset the effects of dopamine missing in her brain. Like the tennis serve and the uncooperative fork, her feet became cause for further doubts. Was she stepping up a curb when she thought she was? Staircases were worse. She was taught to think as she walked: “I am going up stairs, one foot, other foot,” and so on. I suppose, like anything else, good training ultimately makes think-walking second nature. Imagine, though, not being able to run at will, stand up quickly, slice a piece of cake the way you always had. Imagine beginning to doubt every activity once taken for granted. Imagine doubting that you want to carry on; bouts of depression, along with diminished taste buds, are symptoms too.
            My brother-in-law calls her his hero. She has shown grace under pressure, and then some, has managed to understand others are even less fortunate than she. I don’t know that I would be able to do that, fend off anger and self-pity as she does. She did say to me one day that she cannot imagine going on for twenty more years this way. It wears one down, I said, trying to be helpful.
            As her condition worsened, I found myself confused. Not about what to do; my job as I see it is to let her be as normal as possible. Talk about her ills without pretense or false hope, but talk regular stuff too, even if that means chattering away: distraction and inclusion. My confusion arose from being unprepared. Our family enjoys longevity and good health. I’d figured out, however imperfectly, a way to survive growing up, but I have not figured out how to stand up against disease. I think about parents with terribly ill children, leukemia, say, or tumors, about droughts and famine, about a world of indiscriminate suffering, and I’m not sure how to get on top of that reality. If knowledge is power, my sister’s diagnosis has given us both an education neither of us would ever have chosen.
            Okay, she did not return my long ago need to worship. I may have been impossible at times, in that annoying way adoring, half-jealous younger siblings can be (one of my specialties was copy-catting; waiting then ordering exactly what she ordered when the family ate out), but she was my older sister then and is my older sister still, even if I have to help her walk or get her her breakfast. Mornings are especially tough with PD, starting with getting out of bed on an uncooperative musculature.
            That meant no more holding grudges. I remember the first terrified day of kindergarten; as soon as my mother left me off, I ran straight under the teacher’s enormous desk. My sister was called from her third-grade classroom to address the issue. I heard the teacher and I think the principal telling her to urge me out. I refused. She crawled in and told me to come out. I refused a second time. Out of hearing, probably in a hot whisper, she let me know one on one: Come out or else, and she very likely added a sharp pinch to my skinny arm. Out I came, anxiety and shyness unanswered. I yielded to her authority.
            She greeted me open-armed when I returned from Mexico, the prodigal little sister back in the fold. No mention was made of past wounds. We agreed—some silent how—to show each other goodness. If that meant burying part of myself, fine, I’d split around us getting along; circle the square. I can’t say what hoops she went through to incorporate me into her uptown world, but I have gone beyond good will. I have committed, let her know I can be trusted, that I will be there for her. How do I know that this is true? I don’t. I might let her down. I’ve had to sometimes turn away, imagine a big desk to crawl under. I’ve gone numb, seeing her suffer. I’ve wished for a magic wand to stop the appalling dyskinesia, her limbs flying around in uncontrolled motion. I’ve wished not to care, to go back to the old doubts and hostilities so I could walk away, knowing walking away is no longer an option.
She’s had four surgeries; deep brain stimulation electrodes implanted in either front lobe, and the batteries to run them, one placed beneath each collarbone. Her brain had to be pried into twice to place the—wires?—I’m not sure exactly what they are. Rows of mean-looking staples held her head closed, and four more holes were drilled on both sides of her lower head to connect to the batteries. She had to be awake for the lobe implants; heard the drill enter, smelled the hot flesh of her opening skull. I was in Los Angeles for the lead up to surgery number one. She stopped wanting to chat. She was shutting down in fear. (Who wouldn’t?) We are as different as ever, and I was far away again, but I would not let her off the hook. I kept calling, working out the three-hour time difference. Let’s walk through this, I said to her, look fear in the eye, let’s take some of the mystery and sting out of old Mr. Scary; get at the core of the beast.
            I’d become the older sister.
            She is improving, but it’s a temporary fix. A matter of a few years perhaps before the brain stops accepting the electrical stimulation, maybe figures out it’s been had. We take it one day at a time. I’ve seen glimpses of her old self, including some of the things that used to make me cringe, but that’s good, that’s normal, for her to tell me impatiently in the grocery store to hurry up. Her voice is lower and the childlike sparkle in her eyes, born of constant suffering (suffering to the point of insanity?) is dimmed. Recently, there was no glimmer at all. I think she will shine again, if only briefly: a star with a last burst of energy. She has that sort of courage.
            I don’t think we will be sharing that room after all. I can’t say why I thought we’d be bunkmates again; some primitive notion of returning to the beginning, a rounding out of who we have become? It did occur to me that I thought she’d always be there to protect me. She may have shooed me away from her older girlfriends or pretended I wasn’t there, but she’d also stop me in school hallways to pull my perpetually straying hair back into a ponytail. In her way, she had her eye out for me, and, in spite of all that has happened to her, still does. We’d probably have made a better go of it, sharing a room the second time around; we’d know how fragile life is and behave accordingly. That’s what I tell myself, but mostly I don’t understand anymore what I thought I understood about how things work.

Return to Table of Contents, Volume 10, 2010.

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