A scene from my first neurology appointment
Yesterday, I received a message from my neurologist regarding my spinal tap.
There were no viruses or stale beer found in my spinal fluid. The blood tests conducted to find some evidence of why I might have a hole in my brain, also came back negative.
My neurologist concluded that after eight years of the expansive and expensive medical tests–the answer we’ve been searching for so long remains unfounded. He is still uncertain why I have a hole in my brain and, if or when, my condition will worsen.
In September 2013, I went to my first neurology appointment. I remember how naive I was. Just a kid certain he would get answers. Certain I would be prescribed some pills, advised to drink plenty of water, get 8 hours of sleep and soon, if I followed the doctor’s orders, I would be good as new. I mean, this is America, right? Home of Pfizer, Moderna, and Grey’s Anatomy.
Eight years later: the only certainty is uncertainty.
I’ve come to recognize, resisting uncertainty won’t make me feel better. Resisting or denying or pleading ignorance won’t plug the hole in my brain. For me, writing has become the most reliable form of accepting uncertainty. There is something reassuring about putting certain words down, in a certain order. When you write a story, you’re in charge. A literary foreman. Swinging nouns and verbs like a hammer, laboring to bring forth something solid and real. Something with foundational certitude.
If you’re uncertain, I find doing something predictable like walking, reading, or pulling weeds helps relieve uncertainty. As someone once told me, “To find yourself, sometimes you have to lose yourself in action.”
Writing my book (man, that sounds pretentious), has allowed me to reflect on moments with older, wiser, more accepting eyes. I can see things now that I didn’t see then. I can find clarity and humor in some of the most unclear and unfunny moments in my life. Moments of dizzying uncertainty.
Getting sick has forced me to admit: uncertainty is simply a truth of life. A truth that will always exist. And so, we have to make a choice: we can either accept this truth, adapt, and make peace with uncertainty or spend our fleeting time needlessly worrying about things we can and will never control.
“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
~ The Serenity Prayer– American theologian Reinhold Niebuhr
This week, to celebrate my continuing uncertainty, and maybe yours too, I want to share an excerpt from the first chapter of the book, “The Phone Call”, about my first neurology appointment in 2013. When I was so much younger and so certain that certainty was a prescription away.
Mom and I entered Dr. Paul Simon’s office and stepped into 1976: Cherry wood paneled walls and an orangey matted carpet. Framed pictures of waterfalls and hand painted horses tacked randomly in the waiting room. A receptionist sat with her back to us in what looked like a penalty box. Beyond the penalty box was another little room stacked floor to ceiling with manila file folders. Old school files before hard drives and flash drives and computers. The receptionist looked like a receptionist plucked from a 1976 high school yearbook. High gray hair, purple turtleneck, big, tinted reading glasses. She clanged away on a typewriter even though there was a perfectly good computer on her desk. It would not have surprised me if Doc Brown and Marty McFly were in the waiting room discussing Flux Capacitors.
The receptionist took my name and my fifteen-dollar co-pay and told us to have a seat. The waiting room was empty and seemed like it may have been empty since 1976. The pleather chairs looked like yard sale leftovers and the coffee table could have been the one your grandmother had in her living room. Good Day Philadelphia was on a tube TV and a segment on fall fashion trends for men told me that red capri’s are in and khaki-colored khakis are so last year, which made sense since I was wearing khaki-colored khakis.
Everything in the office, even my pants, were from another time.
Mom sat with the back of her head pressed against the panel wall. Her eyes were closed. She looked tired and I had a feeling the last few hours had been tougher on her than on me.
A nurse entered the waiting room and called my name. She wore pink modern scrubs, and a rose tattoo inked her right forearm. She looked out of place. Like she had wandered into Mike Brady’s living room. She smiled and told us to follow her, and I felt a little more at ease. She led us down a hallway into the biggest examination room I’ve ever been in. Aside from the obligatory examination table, there were two chairs, another coffee table, a changing closet, and a fish tank with a Fat Nemo clownfish floating inside. There was a hi-fi record player with wooden speakers that shared a shelf with gift shop knickknacks: a mug announcing, “Virginia is for Lovers,” a miniature Statue of Liberty, a snow globe with the Goldengate Bridge inside, and a glass ashtray from St. Louis.
And in a way, the weird, the tacky Americana décor magnified the absurdity of the last twenty-four hours of my life.
Dr. Simon rushed into the room with his eyes glued to the prints of my MRI. He stood in the middle of the room with his eyes held on the MRI as Mom, Fat Nemo and I waited. When he looked up, Dr. Simon bore an uncanny resemblance to his famous namesake in a lab coat. Of course, this was not the real Paul Simon but in moments of crushing heartbreak, everything is distorted. It’s difficult to tell where fantasies end and dreams begin.
“Can I call you Jay?”
“You can call me Al.”
Dr. Simon did not laugh. If you didn’t laugh, I suggest you familiarize yourself with Paul Simon songs right now.
I always play music for my children. My father played music for me. In troubled times, I find great refuge in the comfort of song. As I tell you the rest of this story, I will make allusions to Paul Simon songs. My hope is that when you finish reading, you will retreat to the source of your music and comfort yourself with some Paul Simon songs. My personal favorites are woven into the rest of the story. See if you can find them.
Dr. Paul Simon studies the MRI. Except for the bubbles from Fat Nemo’s fish tank, there was the sound of silence
Then finally, Dr. Simon said, “Jason, when did these symptoms start?
As I told him, he stood listening, arms folded and every so often he would scribble something down on a yellow notepad. His demeanor was professional and reserved until I told him that since I spoke to Dr. Thomas yesterday, I’d been doing some research on my own.
He looked up. “So, you’re playing doctor?”
I sensed I was standing on a bridge over troubled water.
“No. Just curious.”
“Okay, so what do you think you have?
“From your Googling, what do you think you have? And I will tell you if you have it or not.”
I was suddenly thrown into a game of diagnosis roulette. I looked at mom. I looked at Fat Nemo.
“Doctor, this is not a fun game.”
“I understand. Do you want to know what I think you have?”
Sheepishly, I answered, “Yes.”
Dr. Simon explained my MRI clearly revealed a diffuse cerebellar atrophy. However, it was his opinion the atrophy could indicate the onset of Parkinson’s or a form of Spinocerebellar Ataxia, or SCA for short.
Thanks to Marty McFly, I knew about Parkinson’s. Spinocerebellar Ataxia (SCA) sounded scary, and I didn’t ask. But Mom did. Moms are good for that. Asking the hard questions their children would rather avoid.
“There are many different strands of SCA. And we can’t know what strand Jason has until he has further testing. Some strands progress slowly over years and others progress quickly and are fatal.”
I looked at mom. Then at Fat Nemo. Neither said a word.
Dr. Simon wrote a few scripts for me and urged me to get tests and blood work done immediately. He also said he wanted me to go see Dr. Reardon, a renowned neurologist, at Jefferson Hospital in Philadelphia.
Mom and I left the office in silence and as we crossed the parking lot she slipped her arm through mine and rested her head on my shoulder. If I was a dead man walking, mom just wanted to be as close to me as life allowed. Mom had always been that way. Trying to take away her son’s pain. So much of what I have written in this book is my attempt to feel what mom has felt. To recognize the deep, uncompromising love that welds the bond between parent and child. A mother-child reunion.
We got into the car and mom drove toward the testing center while I Googled Spinocerebellar Ataxia on my phone.
Homeward bound, I wish I was.
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