Story Behind The Story

In the middle of a steamy August 2012 afternoon, I was sitting inside a chain restaurant located in a suburban mall some 40 miles west of Boston. Across from me sat the man who would be the main character in the book I was just starting to research.

I needed to get to know the fortysomething Jamie Clark — a Massachusetts middle school jazz band director who bore a striking resemblance to Kris Kringle — because he was going to be the central figure around whom the action was going to circle. I planned to shadow him and his student musicians during the upcoming school year to see how Clark handled his young charges who were mourning the recent loss of a trumpet player in the band.

The cooled remains of our lunches were hardening on our plates in the nearly-empty eatery as the super-chatty Clark explained the meaning behind the Celtic necklaces he kept tucked beneath his shirt. It was during his explanation when I first noticed it: a weirdness with my left leg.

Over the next few weeks — as I continued meeting with Clark at his home, at the middle school music room, over drinks at a local pub, over cups of coffee at coffee shops — a numbness spread like ivy along my left side. It wrapped itself around my leg and torso, diminishing skin sensitivity to such a degree that I became alarmed and consulted my primary care physician. I figured I had something like a pinched nerve, or, perhaps, Lyme disease.

Two years later, I learned it wasn’t either of those things. It was multiple sclerosis. 

In May 2017, I launched Mr. Clark’s Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room into the world at a party in the middle school where the book was set. A few weeks after Mr. Clark’s Big Band’s publication, I submitted the first draft of my medical memoir, Uncomfortably Numb, as my thesis for my MFA in creative nonfiction program. That memoir would be published in March 2020, during a lethal global pandemic.

These two books — one about a charismatic band director leading his grieving middle school jazz musicians, the other about the onset of an incurable disease of the central nervous system that thoroughly upended a life — may sit on different bookstore shelves, but are inextricably tied together, as their stories unfolded simultaneously, one layered atop the other.

I never aspired or planned to write a memoir, never mind a medically-oriented one. But as I worked on Mr. Clark’s Big Band, and was ultimately diagnosed with MS in July 2014, I realized the autoimmune disease was lurking behind every page about the jazz band I followed from September 2012 through June 2013. 

Months after I finished shadowing Clark, in the fall of 2013, my 64-year-old mother was diagnosed with a fast-moving cancer that killed her in early March 2014. My 67-year-old father fell ill over the July 4th weekend that year and required hospitalization. A few weeks later, in late July, I became seriously ill several times, was taken to the hospital via ambulance and was finally diagnosed with MS. I began taking medication for my MS in the fall 2014, but continued to struggle with a host of symptoms.

As the calendar flipped to 2015, I felt as though my life had been disrupted by a succession of meteor strikes. The stunning turns my life had taken slowed the progress I’d been making on the manuscript for Mr. Clark’s Big Band. For long stretches of time — between my mother’s illness and death, and my multiple sclerosis — it was incredibly challenging for me to work on the jazz band book as I was mired in my own confusion, anger and grief. I couldn’t clear my head.

It was my enrollment in an online MFA creative nonfiction program that helped jump-start Mr. Clark’s Big Band, affording me opportunities to workshop great swaths of the manuscript, so much so that I was able to deliver a voluminous first draft — in an orange, three-ring binder — to Clark’s house on June 26, 2015, the same day the Supreme Court legalized gay marriage. 

After editing and streamlining the manuscript, in mid-2016, I found a publisher who said she could get Mr. Clark’s Big Band into the hands of the student musicians about whom I wrote — my older son Jonah included — before they graduated from high school in May 2017.

However, I hadn’t yet completed my MFA classes; I was set to graduate in May 2017 and didn’t relish the idea of further tinkering with a manuscript that was already in a publisher’s hands. Impulsively, I made the decision to write a meta kind of memoir for my thesis, one about not only the impact of MS on my day-to-day life, but how I also feared the fatigue and lethargy, the foggy-headedness and physical MS discomforts (numbness, spasticity, heat sensitivity, migraines) might prevent me from finishing the tale of that jazz band. 

The launch party for Mr. Clark’s Big Band — an achievement I saw as a personal moment of triumph over MS — is the last scene in Uncomfortably Numb, one where I reach an uneasy peace with this chronic illness, a baton pass from one book and one experience, to another. Both are stories about overcoming grief — about the loss of a young friend for the middle schoolers, about the loss of one’s health and vision of one’s own future for me. In the end, we all found solace in community, in love and in hope in between the four covers of two books.

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Meredith O’Brien has written four books including her most recent, Uncomfortably Numb: a memoir. Mr. Clark’s Big Band won an Independent Publisher Book Award and was a finalist for a Foreword INDIES award. Follow her on Twitter, @MeredithOBrien and visit her website, mereditheobrien.com.

UNCOMFORTABLY NUMB, Meredith O’Brien

About losing one’s life as it was once imagined, and the ultimate, uneasy peace that’s achieved with the permanent uncertainty which accompanies living with a chronic illness. It begins with numbness on her left leg. Then it spreads. Even though an MRI finds a “mass” on her brainstem, it takes two more years for Meredith O’Brien to learn what is causing that numbness.

Months after her 65-year-old mother dies from a fast-moving cancer, weeks after her father is hospitalized and she experiences an unexpected job change, she learns she has multiple sclerosis.

Suddenly, Meredith, a married mother of three teens, has to figure out how to move forward into a life she no longer recognizes. Reimagining her life as a writer and an educator, as a mother and a spouse, she has to adjust to the restrictions MS imposes on her. It is a life, altered.

“A journalist by training and a writer by nature, she fearlessly investigates, contemplates, and confronts her diagnosis of multiple sclerosis as she learns to adapt to her body’s new way of being in the world. Her frank look at what this process is like for both herself and her family will be heartening to anyone who has lived with the uncertainty of chronic illness.” — New York Times bestselling writer Andrea J. Buchanan, author of The Beginning of Everything

“In Uncomfortably Numb, Meredith O’Brien writes unflinchingly about her life before and after her MS diagnosis. Detailing her treatment, her struggles to be taken seriously by doctors, and the effects of it all on her family, career and sense of self, she writes in a clear-eyed and courageous voice, bringing the reader along with her as she navigates this profound, life-altering experience.” — Sarai Walker, author of Dietland

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Category: On Writing