Audiobooks.com is putting my MS memoir, Uncomfortably Numb, on sale for the month of May.
Narrated by Erin deWard, the audiobook traces the two years it took me to finally get diagnosed with multiple sclerosis (after being told my symptoms were psychosomatic), and then the three years it took me to reach an uneasy peace with the ways in which the incurable, neurological disease changed my life.
If you click on this link, you can listen to a sample of deWard reading my words aloud (something that still feels surreal, someone else giving voice to my experiences).
Uncomfortably Numb — my medical memoir about the life-altering impact of a multiple sclerosis diagnosis — has been transformed into an audiobook.
I can’t tell you how odd it is to have this intensely personal story about my health and ultimate MS diagnosis, which occurred months after my 65-year-old mother died from a fast-moving cancer, read aloud by somebody else.
When I was first approached about having the memoir professionally narrated, I was excited but also concerned. How could anyone possibly use the emphasis I intended, the specific tone of voice that was in my head when I wrote those words, I wondered.
Well, in the trusted hands of narrator Erin deWard, I fret no longer.
I recently had the pleasure of participating in the Friends of the Hatch Library author series at Bay Path University in Longmeadow, Mass. — where I teach in the MFA in creative nonfiction program, a program from which I graduated in 2017.
I discussed my medical memoir, Uncomfortably Numb, read an excerpt that took place in Martha’s Vineyard aloud, as well as fielded myriad questions about writing, research, and inspiration.
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.)
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.”
A few years into my life with multiple sclerosis, I started noticing that food and beverages tasted … off.
Coffee was bitter. Wine was acidic. Sweet food was bland. And, worst of all, I couldn’t taste salt very well.
The folks at the National Multiple Sclerosis Society’s Momentum Magazine interviewed me for a story about taste dysfunction called, “Does this taste weird to you?”
The article starts by featuring yours truly:
As a salt-lover, Meredith O’Brien used to eat Ritz crackers upside down to savor the salt crystals dissolving on her tongue. But one day, two years into her diagnosis of multiple sclerosis, those same crackers tasted like plain paste. The next morning, her coffee tasted burnt. Red wine at dinner tasted sour. When O’Brien, who is based in the Boston area, brought up the issue to her neurologist, he said he’d never heard of such a thing.
“Taste alterations are a primary MS symptom that has flown largely under the radar,” confirms Mona Bostick, a dietitian-nutritionist in Greensboro, North Carolina, who also lives with MS. A 2016 study in the Journal of Neurology suggested that 15% to 32% of people with MS may experience taste deficits. A 2019 study in the Journal of Community Dentistry and Oral Epidemiology puts that number closer to 40%. The latter study also found that 68.4% of survey respondents complained of dry mouth, which further dampens flavor, as saliva helps taste buds do their job.
Read the rest of the article — which also quotes fellow MS patient and author Trevis Gleason, a chef who shares his “umami bomb” tips — here.
I was honored to be invited to serve as a fellow for the Disability Justice Project. As part of my work with the group, I’ll serve as a mentor to a journalist as she works on journalistic projects.
The Disability Justice Project (DJP) is a strategic partnership between the Disability Rights Fund, an international NGO funding grassroots organizations of persons with disabilities (OPDs) in the Global South, and journalism educator and human rights filmmaker Jody Santos and other nationally recognized media makers from Northeastern University’s School of Journalism in Boston, Massachusetts. Based on a fellowship model, newer professionals with lived experience of disability from the Global South are paired with mentors/professional journalists in the U.S. In an exchange of ideas and experiences, the fellows learn about digital storytelling from some of the best in the industry, while the mentors learn about the global disability justice movement from frontline activists – with the goal of incorporating that new understanding into their reporting for publications like The New York Times and The Guardian or for broadcasters like PBS and ABC.
The group recently ran a feature story about me as I’m writer and journalism faculty member who has a disability (multiple sclerosis). The article entitled, “Meet DJP Mentor Meredith O’Brien,” began:
Disability Justice Project mentor Meredith O’Brien has always loved reading and writing. “As a kid, I was often reading and trying my hand at writing little stories,” she says. “I’d find notebooks around the house and just start writing stories in them.”
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!
Blogger and Instagrammer Jessica Gregory participating in the Instagram #hotdisabilityaidsummer challenge.
Many folks with chronic illnesses regularly use “disability aids” to help them move through the world and do the things they need to do on a daily basis.
Some need mobility aids like crutches, scooters, or wheelchairs. Others need permanent ports in their chests to make the administration of regular doses of medication easier. Yet others need braces, cooling vests, or supportive tools.
The problem is, these items are oftentimes stigmatized. Rather, the people using these items are stigmatized, pitied, looked upon with raised eyebrows. This makes some — including yours truly — reticient to use these aids or reveal them in public.
Author Elissa Dickey posing with the fan she needs to cope with MS-related heat sensitivity.
I was thinking about this subject during a recent conversation with fellow writers as we were discussing our disability aids. I mentioned how I was worried about being able to sit through an upcoming evening game at Fenway Park in Boston to see my beloved Red Sox play. Multiple sclerosis has damaged a part of my brain that regulates my temperature, so that when I’m in a place where it’s hot and/or highly humid, I immediately start to feel ill. Symptoms can include vomiting, stars in my peripheral vision, leg weakness, and dizziness. I can begin to feel “normal” again once I cool off. (This is the reason why, after I take a shower, I need time to cool off before getting dressed, otherwise I’ll become sick.)
When I saw the forecast for this Sox game — temps in the 80s — I was concerned. In order to make it through the game, I’d need to rely on a host of disability aids like a specialized (and very unfashionable) velcro-enclosure cooling vest, cooling cloths, and pressing a series of ice packs onto my neck and in my hands.
A writer who lives with life-threatening allergies — Sandra Beasley, who wrote, Don’t Kill the Birthday Girl: Tales from an Allergic Life –– said she has to tote an Epi-Pen with her everywhere she goes in the event she accidentally ingests something that could kill her. Beasley said she has had to explain to venue personnel at events she’s attending what it is and why she needs it. She encouraged me not only to attend the game, and to openly and unabashedly use my disability aids, but also suggested I create an Instagram challenge where I post a picture of myself wearing that hideously ugly cooling vest, a way to destigmatize it. I was too shy to use some of the hashtags she suggested, like #hotgirldisabilitysummer, so I came up with the more anodyne hashtag: #hotdisabilityaidsummer.
Writer Jennifer Steil, participating in the #hotdisabilityaidsummer challenge, in her neck brace that allows her to work at her computer without excruciating pain.
A post I’ve written for The Mighty, promoting the #hotdisabilityaidsummer challenge, has been published, and others have been joining in on Instagram.
The first image on this post was shared by Jessica Gregory, who goes by the nickname “Delicate Little Petal” on Instagram. In her #hotdisabilityaidsummer post about her crutches, Jessica wrote, “I’m freshly vaccinated and looking forward to my first sexy summer on four legs!”
Author Elissa Dickey (second image), a fellow MS patient who suffers from heat sensitivity, shared a pic of her face next to a fan.
Writer Jennifer Steil (third image) posted a photo of herself wearing the neck brace she needs to don when she’s writing because she said, “My neck is held together with titanium. I have occipital nerve damage and cervicogenic chronic nerve pain.”
Collectively, I’m hoping that #hotdisabilityaidsummer will at least encourage those with chronic illnesses to be less embarassed by their disability aids. I know that I have been less afraid to don my cooling vest as a result of the challenge.
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.
Meredith OBrien 