While I was disappointed that I couldn’t meet folks in person — thanks COVID — I recorded my brief speech for the virtual fundraising luncheon and spoke on the theme of making peace with wherever you are in your life at this very moment, whether you have MS or some other unpredictable obstacle with which you must contend.
(My speech starts in the 37th minute of the video above.)
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.
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.
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!
Dianna Gunn recently interviewed me for her podcast, called the Spoonie Authors Podcast, a group which spotlights writers with disabilities.
For those who are unfamiliar with the phrase “spoonie,” the podcast offers this definition:
A Spoonie is a person who suffers from a chronic illness, condition, or disability that regularly drains them of their energy and/or causes acute pain, resulting in impaired function of ordinary activities. The nickname came from an article called The Spoon Theory by Christine Miserandino, which you can read on butyoudontlooksick.com. In my opinion, it’s still the best way to describe to non-Spoonies what life for us really feels like.
In The Spoon Theory, spoons are used as symbols for every-day activities, such as showering, making lunch, collecting the mail, and so on. Many of us don’t have enough ‘spoons’ to handle the simplest of routines.
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.
Christina 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.
I recently wrote a post for the website Healthline about the things I wish were common knowledge about multiple sclerosis.
Here’s an excerpt:
In late July 2014, my life felt like it imploded after I was diagnosed with relapsing-remitting multiple sclerosis.
Since then, I’ve had to not only adjust the way I move through the world, but have found myself educating others about what this incurable autoimmune disease is actually like.
It would make life a whole lot easier if a few things about multiple sclerosis (MS) became common knowledge. To that end, here’s what I wish everyone understood about MS.
Read the whole piece here.
Image credit: Healthline.
Boston Globe writer Kate Tuttle recently interviewed me about how and why I wrote my memoir, Uncomfortably Numb.
The piece, published online and in the print, included this lovely sketch of my author headshot (originally taken by photographer Nancy Gould).
You can read Tuttle’s article here.
Image credit: The Boston Globe.
While I was gearing up to promote my memoir —Uncomfortably Numb, about the life-altering impact of my multiple sclerosis diagnosis — I realized I should probably tell my employer about both the memoir and the chronic illness.
Thus far, I haven’t had to ask for any accommodations, although I do have a handicapped parking pass to use on campus when I need it. But I thought it would be best if I told the administrator who runs my department in person. (This was well before the coronavirus caused nationwide school shut-downs.)
It prompted me to write an essay which was published by STAT News. The piece starts this way:
As I prepared to tell my employer that I have relapsing remitting multiple sclerosis, I worried about what to expect.
Maybe I’d get a shocked look from the administrator who oversees the department where I teach part-time. Or maybe I’d be quietly phased out, informed that future teaching opportunities have dried up.
This “big reveal” would be, according to multiple sclerosis advocates, a risky move.
Read the rest of the essay here.
Image credit: STAT News.
As I’ve seen events to promote my medical memoir Uncomfortably Numb canceled due to the coronavirus pandemic, I’ve been so grateful for the work of many people who are stepping in to fill the void.
Several woman have been extremely generous in helping me spread the word about my medical memoir through their online book groups.
Ashley Spivey’s book club: Instagram takeover
Self-proclaimed book nerd Ashley Spivey allowed me to take over her book club’s Instagram account this past week to promote Uncomfortably Numb.
I’m new to the world of Instagram stories, so it took me a little bit of time to figure out how to layer words atop the images and then throw music into the mix, like combining UB40’s “Red Red Wine” with a snapshot of my mother (whose death is featured in the memoir) sucking down a glass of red wine.
I had to create visual ways of conveying the experience of writing and researching my memoir, including shooting quasi-awkward videos of myself explaining my process. In addition to a photo of my mom –who was given the nickname The Wine Mother by a local radio DJ, I posted a pic of the bathroom where my biggest MS attack took place, a photo of my family on vacation in Los Angeles just before two MS attacks, and an illustration that I first saw on actress & MS patient Selma Blair’s Instagram account (created by artist Erica Root) depicting MS symptoms.
You can see highlights from my Uncomfortably Numb Instagram takeover here.
Readers Coffeehouse Facebook book group: Book giveaway
Prolific author Kimberly Belle — one of the founders of the Facebook book group Readers Coffeehouse — has been instrumental in the “authors helping authors” movement, assisting those whose book events were canceled in the wake of the coronavirus spread.
After she shared my book with her club members, I engaged in lively online discussion with them before giving away two signed copies.
Annie Horsky McDonnell, of The Write Review: Gives kudos to the memoir
After our recent flash-interview on The Write Review, Horsky McDonnell wrote a short review of Uncomfortably Numb.
“Wow! This book should be read by anyone with Multiple Sclerosis, or other autoimmune disease,” Horsky McDonnell wrote. “… It is a book that is going to help so many people needing a voice to hear when they get their diagnosis with MS, or even a loved one does. It will certainly bring comfort to know they are not alone! After my interview with her, I trust she will be a huge voice for Multiple Sclerosis. I cannot get her out of my head, and I’m sharing her book with my doctors!!”
Yellow Brick Reads Facebook group: Book giveaway
Led by Jady Bernier Babin, members of the Yellow Brick Reads Facebook group vied for a chance to win signed copies of Uncomfortably Numb by sharing ways (other than reading, which, of course, we all adore) they are coping with being asked to shelter-in-place so as not to spread Covid-19.
I was honored to virtually converse with Yellow Brick Reads folks, as well as with the members of Readers Coffeehouse, The Write Review and Spivey’s book club.
Thank you Jady, Kimberly, Annie and Ashley for your support!
Meredith OBrien 