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.”
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.
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!
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.
My latest post for the National Multiple Sclerosis Society’s publication, Momentum Magazine, describes my initial reluctance — fueled by fear — to join an MS support group. But after attending several online support groups to promote my medical memoir, Uncomfortably Numb, I realized I was missing out.
Here’s how the piece begins:
I was diagnosed with relapsing-remitting multiple sclerosis in July 2014. Upon receiving my diagnosis, I reached out to the National MS Society for information. Included in the materials I received were contact details for MS support groups in my area. But despite the fact that I was perfectly able to attend a support group, I resisted.
I was petrified to sit, face-to-face, with my potential future.
I rang out the wretched 2020 and rang in 2021 with interviews about Uncomfortably Numb: a memoir with podcasters and the host of a YouTube series.
We talked about adjusting one’s life to an unexpected turn of events (like having the world shut down because of COVID, as well as, obviously, getting diagnosed with multiple sclerosis), the impulsive decisions we can make when we’re under stress (like “panic adopting” a puppy just months after getting diagnosed with MS, as many folks have done amid coronavirus shut-downs), and the impact of about writing about very personal topics.
Dianna Gunn, of the Spoonie Author Network — a network “devoted to sharing the stories of disabled, d/Deaf, neurodiverse authors (and/or authors who manage mental illness and/or chronic conditions) and educating abled people about what life is like for us as ‘Spoonie’ creatives” — conducted an interview with me where we discussed how a multiple sclerosis diagnosis upended my life and forced a stubborn me to pace myself when it came to my day’s activities (something with which I’ve had mixed results).
Weeks later, Chris Moore, of The Situation and the Story Podcast — which interviews authors about “the ways our various identities and intersectionalities inform our stories and make us who we are” — chatted with me about writing this intensely intimate memoir which covers rough emotional terrain, from my own illness and questions about who I’d be as a writer if some of my symptoms worsened, to the death of my mother with whom I had a challenging relationship.
Then I heard from a California-based neurologist who specializes in multiple sclerosis, Dr. Brandon Beaber, who asked if I’d speak with him about Uncomfortably Numb and my experiences as an MS patient.
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. 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. 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 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.
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.