He stood, a bear, lumbering out of the deep, dark woods of silence--he rose slowly and purposefully, positioning himself between the offending neurologist and myself. “She’s had enough for one day,” he said quietly, and I felt his arms, warm and familiar, encircle my body, holding my tremors at bay, absorbing my misery like a sponge. I sobbed uncontrollably and barely noticed as the doctor--essentially, dismissed--left, placing his business card on the cart beside us. “I don’t think I can get my pantyhose back on,” I finally whispered, my voice halting, my jaw stiff with emotion. I lifted my head from his chest, leaving a slimy patch of despair on his shirt and wiping free--with the back of my hand--the thread of saliva that joined us like an umbilical cord. “It’s not that cold, you won’t need them,” my husband assured me.
He was wrong!
Cold, I have learned in the 13 years since the day I was diagnosed, can aggravate my Parkinson’s symptoms more than most things and, on that day--a frigid day in January, 2003--it hit my legs like the icy slap of death itself. “It’s f-f-freezing,” I stuttered. “Yeah, I noticed that too,” he said, grinning at me with that familiar and all too welcomed twinkle in his eyes.
He’s always been able to make me laugh, my husband. But there was no laughter in me that day--no joy, very little dopamine, and absolutely no hope. I wanted to smile back, but all I could manage was a further slump to my already defeated shoulders and a shaking withdrawal of my heart into the now fragile support of my backbone. At least, that’s the way it felt to me. Odd thing, since I had, just an hour earlier, walked with my customary confidence and self assurance into the hospital for testing--confident, but harboring a secret. A secret that was now fully out in the open and no one could have been more surprised by it than I.
I had dismissed the tremor in my right leg as a pinched nerve for over a year. But then, the tick in my right thumb began and, when I could ignore it no longer, I decided on a home remedy: I Googled it. Starting with my worst fears first, I ruled out Multiple Sclerosis (my Aunt has MS, so it was top on my hit list of fears), then worked my way from there, finally resting at the impossible after ruling out everything else I could think of: My symptoms pointed directly at Parkinson’s Disease. Surely not? I even Googled Panic Disorder and Restless Leg Syndrome, but every rabbit warren of hope I tunneled down kept directing me right back to the Mad Hatter I was coming to suspect was at the root of my problem.
Later that day, I had an unexpected daytime visit from my mother-in-law. We were drinking tea and chatting when, without warning, the full gravity of my suspicion filled me with terror and spilled over in hot, burning tears, scarring my cheeks with invisible track marks. “I think I might have Parkinson’s Disease,” I blurted out, squeezing my eyes closed in an unsuccessful attempt at staunching the flow of tears. “How can I do this to Wayne?” I asked, weeping and hanging my head in shame, “how can I put him through this? No husband deserves this, most especially not mine.” I cried that day, not for me--but, for my husband.
My husband? Yes. Because, he was my partner, my Consort. In my world view, he did not deserve this. I had no right to "inflict" this on him.
My husband? Yes. Because, he was my partner, my Consort. In my world view, he did not deserve this. I had no right to "inflict" this on him.
“Why on earth do you think you have Parkinson’s Disease?” my mother-in-law asked. I told her about the tremor in my leg and the tick, tick, tick in my thumb (which was by then, in fact, a full--if intermittent--pill rolling tremor), and the Google search that screamed Parkinson’s! at me like a personal cyber obscenity attack every time I looked at symptoms. She said, “Oh, no, surely not. No… I have no doubts it will be something quite simple and quite treatable… Perhaps it’s Restless Leg Syndrome? I’m sure it’s nothing serious… You’ll see, the doctor will find out what it is.”
“Perhaps you’re right,” I said, but I only did so, because I could not face the specter of a diagnosis like that any more than she could.
I thought I could will it away. Wish it away. Hope it away. But, I ended up facing it head on--albeit against my will--about a month later when I saw the neurologist my GP referred me to. I was scheduled for a nerve conduction test but, as it turned out, I didn’t have to have one. A few questions and a physical exam were all it took for the doctor to pronounce my life sentence.
Before I even went there, however, something told me I should not attend the appointment alone. I had heard a nerve conduction test could be rather painful, so I asked my husband to come with me. But, it was more than a fear of physical discomfort that prompted me to take Wayne--my second backbone--along, it was the secret I was keeping deep inside, while at the same time hiding so deftly from myself. Which is how I came to be sitting in front of the neurologist that day, hearing the words, “You have Parkinson’s Disease,” and how I came to be--quite ludicrously--defending myself...
An “attack” on the senses can only be met with a rapid fire response. I launched my own attack, “No, no, no, NO, NO!” My opponent was unfazed, “You have Parkinson’s Disease,” he responded calmly, dispassionately. I fired a counter attack, “Find something else!” “There is nothing else,” he said, “you have Parkinson’s Disease.” Now I was getting mad, “I said find something else… tell me to take two of these and call you in the f#*$@*g morning!” I said. He slowly shook his head--and I let go with a salvo of profanity.
But, it was no use, my opponent would not budge. “And,” he said, “I don’t think I’m telling you something you hadn’t already guessed.” “But, that’s not the point,” I stabbed back, sobbing now, “you are supposed to find something else. You are supposed to make it right.” But, suddenly, my shoulders slumped, my head went down, I gave in, defeated. “How certain are you?” I asked, the question coming softly, muffled by my hands. “One hundred percent,” came the gentle, but firm, response. The fight left me then, I simply sat there, weeping.
This--blessedly--is when The Bear stirred. Slowly, deliberately, he came to life. He stood, as if uncurling himself from hibernation, stretched his shoulders back, then stepped between me and the offending doctor--at precisely the moment he was needed. His intervention came not a moment too soon, nor a moment too late--and I needed his strength more than anything in the world right then, because I had not a single scrap left of my own. He stood with his back to the doctor, effectively shielding me from my nemesis, my fear, my pain. I sank into his arms and shook there, as much from gratitude as the symptoms that were, by then, already quite familiar to me.
I have always been a fierce woman. Strong and capable. The person everyone counts on, depends on, calls when the chips are down. But not that day. No, that day, I was defenseless and easily bested by four simple words: You have Parkinson’s Disease. And, had it not been for The Bear, lumbering out of the corner, standing strong and uncompromising between myself and the harbinger of my fears, I believe I might have shrunk away to nothing that day, right there on the gurney, clad in nothing but a paper gown.
Since then, The Bear and I have faced everything this disease has lobbed at us--from medications that made me vomit and lose bladder control, to vision problems, incessant loss of sleep and even brain surgery--and it has been far from easy. But, we watch each other’s backs and, when one of us can bear it no longer, the other shoulders the burden. And, we laugh together. A lot. We are long since past the point of pretense or denial, but we do not dwell on it either. We still occasionally grieve, feel sorry for ourselves, and get angry about this thing but, in the final analysis, together, we are fearless, shameless, and happy--not all the time and not always at the same time, but certainly, most of the time.
Then, there are my friends... but, they are a beautiful story for another day. This day, my story comes down to four simple words:
I have Parkinson’s Disease.
The postscript to this story, however, is that this disease has a largesse of spirit that knows no bounds! It brings with it the gifts of compassion, understanding, patience, serenity, acceptance, comfort, perseverance, and optimism--to name but a few of the blessings Parkinson’s has given me. Sure, I’d rather have received these gifts by way of winning the lottery but, so long as the gifts come, I’ll not complain about the source.
I was 45 when the words were spoken to me and, on that day, in that place, I had no room for hope, only helplessness and fear. So much has changed since then. It took a few years for me to realize that my disease might slow me down, but it was probably not going to kill me (yet, anyway). It might complicate my life, but I would have a life. I would face it every day, but I would not dwell on it as a day-to-day thing. Rather, I would be able to put it firmly in its place: A fact of my being, but not the only fact, not by a long shot.
Blessed Be,
Winnie
Winnie
