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.
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.”
I have been remiss in posting about the wonderful literary event which took place at one of my favorite indie bookshops — Tatnuck Bookseller in Westborough, Mass. — featuring members of the Lockdown Literature writers’ group.
You may recall that during the shutdowns of 2020, I banded together with a group of 70+ authors whose books, like my medical memoir, were being released in the midst of an historic pandemic. Our group included writers of memoirs and nonfiction, of dark novels and wry works of contemporary fiction. We hailed from the east coast and the west, from overseas, and even included a superstar author who won all the big 2020 literary prizes (I’m talking about Douglas Stuart of Shuggie Bain fame).
I was incredibly honored to arrange to have some Lockdown Lit folks gather — just prior to the omicron COVID-19 surge — gather and read aloud from their work at Tatnuck Bookseller. Those talented writers included:
I consume news in the form of two daily, hard copy newspapers (I know, I’m ancient), the Boston Globe and the New York Times. I also read online subscriptions of the Washington Post and the Wall Street Journal, as well as devour magazines, the New Yorker and New York Magazine (yes, in hard copy), and the online version of The Atlantic.
When I’m not busy reading all of that journalistic and literary goodness (I just added the literary magazine Creative Nonfiction to my subscription list), I’m reading books. Funny books. Serious books. Fiction. Nonfiction. New England-centric. Politically-oriented. My tastes run wide.
Halfway through the year I published a list on Instagram of the books I’d read starting in January 2021 through early June 2021:
Then, as 2021 drew to an ignominious close with lines for COVID-19 tests wrapping city blocks, I shared the second half of my 2021 reading list:
What did YOU read in 2021? Give the authors a shout-out. They’d appreciate some social media love.
The rapid development and rollout of coronavirus vaccines is one of the biggest news stories in recent memory. As the novel and highly communicable virus began spreading at the end of 2019, the hunt for a vaccine began in early 2020, relying heavily upon a foundation of knowledge created by little-known scientists and researchers. By the time vaccines were being injected into arms at the end of 2020, the United States had lost hundreds of thousands of people to covid-19.
A story this expansive and consequential could surely fill many books. (Think of how many have been written about the 1918 influenza pandemic.) So it really isn’t surprising that two journalists have tackled the same big story in separate new books — with similar titles and stark covers featuring syringes. The books offer dueling tales of how coronavirus vaccines were developed in what seemed like record time. While they cover some of the same territory and quote some of the same people, the books largely shine their respective lights on different narrative slices of the story.
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.
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!
You can purchase copies of Meredith’s books online AND support an independent bookstore to boot.
When you buy Mr. Clark’s Big Band for your teacher or music friend, when you grab a copy of a medical memoir — Uncomfortably Numb — about what happens when one’s life is involuntarily upended by illness, or you are seeking a darkly humorous novel — Mortified — about a thirtysomething mommy blogger who reveals TMI about her family and lands into hot water, you can feel good about supporting an independent publisher (Wyatt-MacKenzie), and an indie bookshop.
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.
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.
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.