‘another game day’ essay in narrative medicine lit mag

I was honored to have my essay, “Another Game Day,” published by Intima: A Journal of Narrative Medicine.

The essay — structured around my disappointment about having to miss yet another Boston Red Sox game due to multiple sclerosis — is an exploration of how, since being diagnosed with MS in 2014, I’ve been on a long learning curve adjusting to my new normal, adjusting to an unpredictable life with chronic illness.

The essay begins this way:

It was game day.

I had tickets to see my beloved Red Sox play at historic Fenway Park. They were in the hunt for a Wild Card playoff spot.

But I couldn’t attend the game.

Again.

Why? Because it was going to be hot and humid. Because the weather conditions – not the spate of uneven Red Sox performances – would make me ill. Because multiple sclerosis has caused damage to the area of my brain that controls my temperature and, when I’m in hot and humid conditions, that damage causes me to, essentially, short-circuit.

Marleen Pasch

Over on Intima’s blog, Crossroads, writer Marleen Pasch, compared themes in “Another Game Day” with a newly-published essay of her own, “Rocks and River.”

Pasch (on right) said, “O’Brien understands the need to assess risk then listen to and heed the more protective voice of wisdom.”

Read Pasch’s Intima essay here.

pittsburgh’s women on the move luncheon

Since the COVID pandemic essentially shut down the world in early 2020, I haven’t really had the opportunity to speak in front of actual, live people about my medical memoir, Uncomfortably Numb, or about the fact that I have multiple sclerosis. Other than one event to launch the book in March 2020, all my other events have been virtual, and, given the circumstances, that’s entirely reasonable.

Then the Pennsylvania Keystone Chapter of the National Multiple Sclerosis Society invited me to speak at their annual Woman on the Move luncheon for Sept. 29, 2021. The event would occur after we’d had our COVID vaccines. The event would be outdoors. And when not sitting at the tables or speaking at the podium, most folks would wear face masks.

Now that the event has concluded (and I can breathe again … I was low-key terrified about speaking to tell you the truth), I’m experiencing a rush of joy at having been able to not just share my MS experience with others, but about seeing and speaking with fellow MS patients. It’s like a fellowship of sorts, a collection of people who just get it, who understand the unpredictable and chronic nature of the disease, who understand heat sensistivity and what it’s like when you hit a wall of fatigue.

For instance, I spoke with a Pennsylvania man who, despite having MS, has run four marathons, including the Boston Marathon. After my speech — in which I mentioned I have MS-induced heat sensitivity — he wanted to show me photos of how he was able to regulate his temperature while running the marathon (sleeves and a baseball hat filled with ice that would be replenished at different stops along the marathon route).

Several people shared that they, like me, were initially disbelieved or dismissed when they sought medical help for what they feared was multiple sclerosis.

Two nurses who work with MS patients were bursting with pride about their vocation, while someone who does physical therapy with MS patients slipped me her business card and told me she’d be reaching out to me with some advice.

I even got to speak with CBS affiliate KDKA-2 News Anchor Ken Rice — the event emcee — about journalism and baseball, two of my favorite subjects.

Everything from the orange gift bags on the tables — which included candy Boston baked beans (because I’m from the Boston area) and little notebooks (because I’m a writer) — to the authentic warmth everyone exuded, it became shockingly clear to me why so many of us have deeply and vicerally missed being in one another’s presence and why having to understandably be relegated to the safety our COVID bubbles has been painful.

Don’t get me wrong, I’m not running around and partying maskless. I wear my mask outside, indoors (except when eating), and in the classrooms where I teach. (I’m one of the few folks who even wear them to baseball games.) I’ll get a booster shot as soon as I am able. But being with people today at this Women on the Move luncheon made me realize, man, have I missed people!

how to get through a brain mri when you’re claustrophobic

Young woman lying and relaxing on bench in Barcelona beach, Catalonia, Spain.

One of the many aspects of having multiple sclerosis that rattle me is the fact that I have to endure regular MRIs of my brain and spine to determine if MS has caused new damage and whether my current disease modifying medication is still working.

For some folks, this isn’t a big deal. They lie down on the scanning bed, allow themselves to be tucked in with a soft blanket, listen to music through special ear buds, and are perfectly content inside that narrow MRI machine tube for anywhere from a half-hour to an hour-and-a-half (depending on what’s being scanned).

I am not one of those people.

If you are claustrophic like I am, these scans can be a nightmare.

I spoke with a writer from the National Multiple Sclerosis Society’s Momentum Magazine about how I’ve learned to cope with my MRIs without having a panic attack. This doesn’t mean I like these scans any more than I ever did, or that I no longer experience the strong desire to flee once I’ve been delivered inside that machine. I’ve just figured out what I need to do in order to get through it.

Here’s how the story begins:

Meredith O’Brien won’t soon forget the magnetic resonance imaging (MRI) scan she had in 2014. “I didn’t know my head would be locked down in a hard plastic ‘face cage,’” she says. When she told the technician she was claustrophobic, he directed her to a mirror she could use to see around the room. “I know he was trying to be kind, but I had a panic attack,” says O’Brien, 51, a Boston-based writer with relapsing-remitting multiple sclerosis (RRMS). She ended up removing the blankets given to her and getting out of the machine to calm down before trying again.

Here’s a link to the whole story: https://momentummagazineonline.com/7-tips-for-getting-through-an-mri-if-you-have-ms/

Image credit: Momentum Magazine.

got readers on your holiday list? give ’em signed books from an indie bookstore

Tatnuck Booksellers in Westborough, MA has signed copies of three of my books (a memoir, a novel and a work of nonfiction) for sale, just in time for the readers on your holiday lists. Given that COVID has severely affected small businesses like independent bookstores, I’m sure they’d appreciate your support.

Signed books include:

Uncomfortably Numb: a memoir about the life-altering diagnosis of multiple sclerosis Kindle Edition

Uncomfortably Numb: a memoir. My medical memoir about the life-altering impact of a multiple sclerosis diagnosis. It chronicles the two years it took to get an MS diagnosis and confirmation that the symptoms I was experiencing weren’t simply in my imagination (as one physician suggested), as well as the uneasy piece I reached an uneasy peace with my post-MS life.

Mr. Clark's Big Band: A Year of Laughter, Tears, and Jazz in a Middle School Band Room Kindle Edition

Mr. Clark’s Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room. A book about the 2012-2013 school year I shadowed the Southborough, MA middle school jazz band as they were recovering from mourning the sudden death of one of their own, a 12-year-old trumpet player named Eric Green. This award-winning book would be great for any educators on your list.

Mortified: a book about oversharing by [Meredith O'Brien]

Mortified: a novel about oversharing. Set in 2004 at the height of mommy blogging, this darkly humorous work of contemporary fiction follows a thirtysomething mom of two who started venting about her frustration with modern parenting through her blog. When her family discovers the unkind things she’s been writing about them online, well, all hell breaks loose.

book decoder blogger calls ‘uncomfortably numb’ ‘inspiring’

cropped-the-book-decoder1-1The Book Decoder blogger recently reviewed Uncomfortably Numbcalling it “inspiring.”

Here’s an excerpt:

I cried as I read Meredith’s prognosis. I don’t think I can ever express my feelings in words. Sometimes I wonder how our lives change within a fraction of a second. A diagnosis, untimely death – it’s as if, we were happy for a second and the next thing we know, we are hit by a freight train. It is easy to say “adjust to the new normal” or “learn to live with uncertainty” but it is not as easy as it sounds. Traumatic experiences make “adjusting” difficult.

Read the whole review here.

new post on the mighty: how covid-19 & ms make for a high-stakes summer

A woman with a hat in the sun

The second week of July marked the first string of days this year where I could not go outside because of my multiple sclerosis-related heat sensitivity. What makes 2020 different from the five other summers in which I’ve dealt with this particular MS symptom? There’s a pandemic going on.

I wrote a piece for the website The Mighty about the confluence of the two illnesses. Here’s how it starts:

Today was the first summer day in 2020 when stepping outside the house made me feel as though I was going to vomit. The moderate heat, combined with high humidity, enveloped me and made me instantly feel ill.

Somewhere, deep inside my brain, signals went haywire. The temperature regulation area of my brain has been damaged by my relapsing remitting multiple sclerosis (MS), meaning I can’t tolerate heat and humidity. Subjecting my body to such conditions results in nausea and/or vomiting, dizziness, blurry vision with bright lights in the corners of my eyes, and a weakening of my legs, as though my thighs have been infused with Jell-O.

To read the rest of the piece click here.

Image credit: The Mighty.

lockdown lit @ lunch, july 7, 2 pm ET

Book talk on Facebook Live

Florida journalist Leslie Gray Streeter, author of Black Widow, and I will chat about our memoirs on Tuesday, July 7 at 2 p.m. EST/11 a.m. PST.

lockdownlit4The event is co-sponsored by The Booksmith in San Francisco and Zyzzyva Magazine as part of their Lockdown Lit @ Lunch series. Both Leslie and I are members of Lockdown Literature, a collection of over 80 authors who banded together as our books were published during the coronavirus pandemic and the ensuing lockdown.

Leslie038_lesliesz is a columnist for the Palm Beach Post and the author of Black Widow: A Sad-Funny Journey Through Grief for People Who Normally Avoid Books With Words Like ‘Journey’ In The Title. She lives in West Palm Beach with her mother Tina and her son Brooks.

You can watch the live-stream of this Facebook event — or watch it later, but then you won’t be able to ask us questions live — here.

 

 

talking hope, healing & loss w/new york writers workshop

Screenshot 2020-06-15 12.45.59Christina Chiu — working with the New York Writers Workshop and 2040Books — organized a virtual author event where she invited three writers to discuss our recent books which all touch on the subjects of “Hope, Healing and Loss.” Chiu’s recent novel is Beauty.

I was thrilled to discuss my medical MS memoir, Uncomfortably Numb, alongside memoirist Maya Lang who wrote What We Carry about her mother’s Alzheimer’s, and novelist Jacqueline Friedman whose That’s Not a Thing features a character who develops ALS.

The hour-long discussion was lively and varied, as we touched on topics from approaches to writing and research, to how the medical industry treats female patients differently than male ones.

I had to fend off Tedy, who kept trying to climb up on my chair and eventually succeeded. Then there was Max, who was snorting and moaning loudly on the floor. My husband decided it was the perfect time to make dinner so there were ambient cooking noises as well. Ah … the joys of the coronavirus quanantine and working from home!

You can watch the video of our discussion here.