The Other Shoe Dropped. And believe it or not, I can hear its distinct thud echoing everywhere. This despite the fact that I was told by multiple specialists to stop worrying. I had already been diagnosed with Young-Onset Parkinson’s Disease. What more was I looking for?
I was looking for something that would give me a logical explanation for the severe symptoms that I began experiencing right away. Well, I finally got it. An explanation that is.
It’s called MSA-C (Multiple System Atrophy-Cerebellar type). MSA…most people who know me know that I have been asking specifically about the possibility of MSA since the beginning. That’s because deep down I knew something else was wrong. I could see that my Parkinson’s was much worse by far than anyone’s around me. I experienced no relief from symptoms with exercise; there would be no running a marathon with the Michael J. Fox Foundation for me. Just a slow half mile trudge outside my house, and this after months of practice, still tires me out.
They say that for the first five years after a Parkinson’s diagnosis, many people barely know they have it and often don’t require any medication. I’m only two years in and I experience daily falls, despite using a walker most of the time, and I take upwards of 36 pills a day, requiring a handful every 3 ½ hours, just to keep alive (i.e., for my blood pressure, digestive system, and bladder control, just to name a few).
So yes, I heard it, the other shoe…. I have always heard it, even when people around me either didn’t hear it or refused to acknowledge it in a misguided attempt to spare me pain. If we didn’t give it a name it wouldn’t exist. So when it made itself known undisputedly, two months ago, and we could no longer ignore the signs, that second shoe came crashing down with a force that all but destroyed my world.
And at the same time it didn’t. Why? Because as long as I’m still here, though this disease may destroy my body, I will try my best not to let it destroy my soul.
This resolve doesn’t stop me from hearing the shoe drop all around me. I hear it in the concerned voice of my new neurologist–a movement disorder specialist (MDS)–who took over my case when my old neurologist retired. The shoe’s sound is unmistakable when she sees me walk in for the first time and immediately says, “Oh, this is definitely something more than Parkinsons!” It’s volume ratchets up a little bit when she shows me one of the eight MRIs I have had in the last two years. Once she points it out, it’s hard not to see it…the space that my shrinking cerebellum has left behind. Where presumably there was once a nice, plump, healthy cerebellum that easily handled motor tasks such as sitting, walking, and rolling in bed, now there is a shrunken, misfiring organ, the size of which the good doctor informs me is more typical of a person my father’s age (he’s 87 by the way, I am only 50).
I hear no other sound but that darn shoe dropping when I’m alone at night researching cures for MSA-C (for which I soon realize, there are none) and I read the official prognosis: Prognosis is currently guarded. While multiple system atrophy patients have been reported to live as long as 18 years, most MSA patients pass away from the disorder or its complications within nine years of diagnosis, many unexpectedly, and within months of diagnosis.
Did I mention that the good doctor thinks I’m already three years into this timeline? Crap! My girls will still be in their twenties in six years! I would love to get to know their future husbands and children. My husband will only be in his mid 50s! At a time when he should be considering a relaxing retirement plan, he will be figuring out advanced directives and how one donates my brain to science.
The sound of the other shoe dropping is so loud that it blocks out all other sounds as I cry silently into my pillow and try desperately to find real, honest stories that deal with this disease in a truthful way.
You see, if death is really coming for me at a relatively early age, then I don’t want to spend these precious few years pretending that it’s not. I want to know my fate and I want to plan. If, by all odds, my life is in peril, I want to know the truth. I mean, I plan on being written-up in the books as the longest survivor ever of MSA-C, but the reality is most likely I will not.
And I’m not sure I’d want to anyway.
It sounds like a pretty poor quality of life even if you do manage to eek out a few extra years. They hook you up to every tube imagnable, coming in and going out of your body. I am not sure the years would be worth having a life like that. But least I’d still have my cognitive skills. Surprisingly, those will remain intact.
Sometimes, I can’t believe that these are really the things I contemplate now.
Presently, I hear the shoe dropping in the odd clumping sound of my right foot and the strange dragging sound of my left foot as it scuffs the pavement, trying uselessly to keep up. I may have the slow, stiff body of a person with Parkinson’s, but not the gait. Instead of small shuffling steps, I take big, wide wobbly steps, lurching around like I’m in a bouncy house, which is what walking actually feels like to me. All. The. Time.
I hear in the muffled cries of my daughters as they try to remain “strong” when I tell them this newest development. I tell them to go ahead and cry as loud as they want because honestly…this sucks.
I’ll never forget when I was in my early thirties and my strong, stoic, tiger mom called me over to the couch and told me matter of factly that she just found out she had stage 4 lung cancer (meaning it was already in her lungs, brain and bones) and was given less than six months to live. Tears started welling up in my eyes as I realized that I was going to lose her much earlier than I thought possible, and she quickly said, “Don’t cry. Now is not the time for crying.” I thought to myself, “If not now, when?!”
But I did as she said. I stifled the cries and dried up the tears. And we never spoke of it again. Not of the unfairness of a non-smoker getting lung cancer (which is incorrectly and widely assumed to be somehow deserved by the smoking patient). Not of the cruelness and ugliness of this particular disease. Not of the many losses we were about to endure, each of us in our own way. And certainly not of the love that we undeniably felt for one another. Those were hard times. And I was 36. Too young I thought, to lose my mother. My youngest just turned 18 this year.
Which is why I feel it’s important to leave my girls secure in this: despite my early departure, they were intensely loved by me. They will soon be “the girls that lost their mother too soon,” and this I cannot change. But to borrow from my favorite book of the moment, The Unwinding of a Miracle by Julie Yip-Williams, “As your mother, I wish I could protect you from that pain. But also as your mother, I want you to feel the pain, to live it, embrace the pain and then learn from it. This is my mission to you, my sweet girls: to take an ugly tragedy and transform it into a source of love, beauty, strength, courage and wisdom.”
My mission is not to live as long as possible. It’s to live and die as honestly as possible.
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Photo by Karl Magnuson on Unsplash