It’s only because MS patients and professionals were willing to take the time to answer my questions, share their experiences — some of them excruciatingly personal — that I have this book at all.
I want to express my boundless appreciation to the folks who made Uncomfortably Numb 2 possible. Today’s post is dedicated to three of the contributors: Sarah Quezada, Noelle Connolly, and Paige Butas.
I met Sarah Quezada in Washington, D.C. this past March when we were both volunteer patient advocates for the National MS Society getting ready to descend on the Capitol to plead with our elected officials to protect Medicaid from steep cuts and to maintain the bipartisan, $22 million MS research program through the Department of Defense. Sarah met her task with enthusiasm and determination. She is a force. She has not only cultivated an online following for her Instagram page MSfitmomma, but she uses her voice to speak up for those who will be affected by various government policies.
Noelle was a young teen away at school when she started to experience what would later be considered multiple sclerosis symptoms including numb feet, difficulty walking, nerve pain, and fatigue. At the time, she was dismissed as “a dramatic, 17-year-old blond girl.” It took until she was 23 and couldn’t control her left hand for her to receive the MS diagnosis. Now, Noelle, who has an Instagram account called MS.LivingBalanced is a powerful advocate for focusing on what one CAN do while living with MS. For the past several autumns, she’s participated in the Greater New England Chapter of the National MS Society’s fashion show, taking to the runway with her mobility devices. “I still make a difference,” she says, “and I’m still valued.”
Paige Butas wasn’t a casual weekend warrior. An endurance athlete who seriously competed in triathlons, when she was in her late thirties she suddenly experienced numbness on her head “that spread down the entire right side of my face over the course of a week,” in addition to “auditory hallucinations.” A physician told her she might develop MS saying, “It’s not a matter of if but when you have another episode.” It took four years for her to get the officials MS diagnosis. She handled her frustrations and deep disappointment about the changes multiple sclerosis made to her life by channeling them into TikTok videos meant to educate and provide community to fellow MSers. Here’s her TikTok account.
I’m thrilled that the sequel to my 2020 medical memoir is now on sale. Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients tells the stories of a variety of multiple sclerosis patients who are in varying stages of the autoimmune disease. A neurologist who specializes in MS and pediatric neurology, as well as a National MS Society state advocacy professional’s stories are also included.
Kirkus Reviews gave it a shoutout:
This follow-up to O’Brien’s memoir, Uncomfortably Numb (2020), follows several multiple sclerosis patients and experts on their emotional journeys. It’s easy to see shared experiences across the many narratives; many of the people presented here have faced similar challenges with aspects of their illness, from dealing with insurance and prescription drug cost issues to other people’s judgement of using the Americans with Disabilities Act parking when their symptoms aren’t visible to others. A project that many will find relatable.
The president and CEO of the National Multiple Sclerosis Society, Dr. Tim Coetzee was kind enough to write the foreword in which he says, “This book is essential readding for anyone who wants to fully understand the journey of MS from the perspective of those living with the disease.”
It was a fraught and contentious atmosphere in which to be visiting the Hill. A few of our volunteer MS Activists — many of whom have MS themselves — reported being met with disrespectful staffers, including one who complained that he was “tired of all the lies” when it came to their Medicaid pitch.
During the training portion of our conference, MS Society volunteers heard from Evan Conant, a full-time employed husband whose wife has severe MS to the point where she needs round-the-clock care in their home. They have private health insurance through his work, but were shelling out over $70,000 annually for her care, which he said was financially unsustainable. They learned of a Medicaid waiver program which enables people who demonstrate tremendous need to be able to pay monthly premiums (if your state allows it) in order to get assistance with medical costs. In Conant’s case, after three years of rigorous vetting, he said his family was allowed to buy into the program to provide four hours of health aide coverage so he could continue working and his wife was safe in their home. This is the kind of story that was met with disregard for some folks (as examples of “waste, fraud, and abuse in the system”), whereas, historically, MS Activists have said, they’ve been warmly welcomed by lawmakers because multiple sclerosis issues, and the MS Society as a whole, are nonpartisan.
However my Massachusetts crew (pictured in the photos above), was fortunate in that all of our meetings — with US Senator Elizabeth Warren and Ed Markey’s staffers, as well as with congressional staffers from our various districts — went well. Staffers were uniformly understanding and kind, even if some were palpably stressed by what’s currently transpiring in Washington, D.C.
Will volunteer MS patients speaking up for MS research help? I know that without prior medical research into possible MS treatments, the medicines upon which I rely to cope with my MS symptoms and to prevent more spinal and brain lesions from forming would likely have NOT been developed. My life could look much different. Who knows if I’d be working, or writing, or volunteering. And for working folks whose MS is severe and requires services they can’t afford, sharing their stories with people who control the funding mechanisms of government, could, perhaps move a person or two. Sometimes, that’s all you need.
Advocating for policies and laws needed by those with chronic illnesses, like MS, is a subject I cover in my forthcoming book,Uncomfortably Numb 2 (available for pre-order). This is a relatively recent (since 2022) endeavor for me, this advocating business, but it’s left me feeling as though, even though I can’t control my what ultimately happens with my MS, I can use my voice to try to make the world a bit better for people with chronic illnesses. It also makes me feel less alone in the fight. We’re stronger, the saying goes, when we fight together.
While I’ve already announced the upcoming February release of my second novel — Louie on the Rocks, a dark comedy set in central Massachusetts about a dysfunctional family influenced by Trump era politics, circa 2019 — I can now proudly announce my second 2025 book.
Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients is slated for publication in May 2025 by Wyatt-MacKenzie, which published my 2020 medical memoir, Uncomfortably Numb, about the life-altering impact of my MS diagnosis.
This nonfiction book will feature the stories of MS patients at varying stages of the incurable autoimmune disease of the brain and spinal cord, and of MS advocates who work to better the world for multiple sclerosis patients. Additionally, I share new stories about how I have morphed from being a stunned, newly-diagnosed patient to an MS Activist who lobbies state and federal lawmakers on behalf of the National Multiple Sclerosis Society.
It’ll be quite the tonal shift to move from promoting a dark comedy about an alcoholic MAGA dad squaring off against his progressive, bookseller daughter just weeks after the presidential inauguration, to discussing the experiences of MS patients. I hope you’ll join me on what promises to be one bizarre ride.
Ten years ago today, I was discharged from a Boston hospital and officially received my MS diagnosis. My husband Scott and I left the doctor’s suburban Boston area office and drove directly to Firefly’s, which served our son Casey’s favorite BBQ. It was his 13th birthday and we wanted him to bring him some of his beloved dishes because we NEEDED to celebrate.
Let me back up a bit and set the stage …
In the preceding week, my family of five had taken a much-needed trip to Los Angeles. It had been four months since my 65-year-old mother had died from a fast-moving cancer. It had been a couple weeks since my 67-year-old father was admitted to the hospital and then to a rehab center to regain his strength. It’d been weeks since my young nephew had been treated and released from Boston Children’s Hospital after what was believed to have been a pancreatitis attack. It hadn’t been very fun around my house. We wanted to flee Massachusetts, so we sought a journey to the land of make-believe, hoping to outrun our bad luck.
Ha, said fate.
On the first morning in our Air-BNB, I received a stilted phone call from my Boston-based neurologist. The MRI I’d had of my brain weeks earlier — the one about whose results I’d been hounding the neurologist’s staff for in the days leading up to the trip — showed I had new lesions and a couple of them were actively inflamed. The doc wanted me to see him immediately. Irritated, because this was the exact situation I’d been trying to avoid, I told him we were in LA for 10 days. He scheduled an appointment for the Tuesday after we returned home. He never officially said I had MS, never told me to avoid heat or humidity, and didn’t give me any advice for how to proceed until I got home. He must’ve thought it was evident that the presence of multiple lesions meant I had MS, but Scott and I decided, since we were in the land of make-believe we were going to make believe this call never happened.
Until the Hollywood Bowl. As comedian Jack Black took the stage to emcee a pops performance of music from Pixar films at the famed outdoor venue, the days spent in hot and humid conditions caught up with me. I became violently ill. Not only was I sick to my stomach, but I was dizzy, weak, saw flashing lights in the periphery of my vision, and couldn’t really walk. Since we were seated at the top level of the facility, staffers had to locate a wheelchair and in order to take me down to the medical station on the ground floor. My then-15-year-old twins — eyes wide with worry — “watched” over me while Scott and Casey, then-12, ran to fetch our rented vehicle. They arrived just as fireworks were being detonated in thunderous fashion, the explosions echoing against the walls, creating an ominous, end-of-the-world-like soundtrack.
Weakened, I spent the next day resting, but rallied to attend an evening Anaheim Angels’ game for which we already had tickets. Scott and I pretended the whole thing was either food poisoning or a result of me accidentally eating something that didn’t agree with my dairy allergy. In the ensuing days, we went to see the famed British football team Manchester United play the LA Galaxy at the Rose Bowl, goofed around in Madame Tussauds‘ wax museum, and visited the Ronald Reagan presidential library in Simi Valley.
On the day we were supposed to return to reality in Boston, I experienced an attack like the one at the Hollywood Bowl. Only worse. I was again sick to my stomach. Again, I was weak and could barely walk. My daughter said I was lying on the floor and so out of it that it seemed like I was drugged. The fact that our rented Santa Monica bungalow had no AC and that my damaged brain — which MS had rendered incapable of handling heat and humidity — couldn’t handle the weather never occurred to us. Then again, in that moment, I couldn’t hold a cogent thought in my head as my family packed up the Air-BNB and Scott called my neurologist to get some medication so I could board a plane back to Boston.
Two days later, on a Sunday, I woke in my own bedroom to a third attack worse than the preceding two. I couldn’t stop vomiting. I was weak. I couldn’t walk. I saw stars in my eyes. Nine-one-one was called. I was transported from a small local hospital then transferred to a large Boston facility where my doctor worked. I kept trying to get the neurologists at the hospital to contact their colleague, the one who called me that first morning in LA. But they didn’t. And I didn’t receive any treatment to stop the attack — which would’ve been IV steroids, something I received the following week.
On that Tuesday morning, Casey’s 13th birthday, I was released from the hospital and went straight to the neurologist’s office, just outside of Boston. It was there where he looked surprised when I asked him if I had MS. Clearly, he thought it should’ve been obvious that I did. He told me we had to decide what kind of medicine I’d take to try and slow down the disease progression but, in the meantime, we scheduled another MRI, which would show the presence of even more angry and inflamed lesions that would lead to three days of outpatient, steroid IV treatment. Scott and I left the neurologist’s appointment facing a new and uncertain landscape. But we had one immediate concern: Casey’s birthday.
Since my hospitalization, our dear friend Gretchen had been taking our three kids out, feeding them, and even brought the twins shopping so we’d have gifts to give Casey. Gretchen also pulled together the ingredients for Casey’s favorite birthday dessert, the lava cake similar to the one The Rainforest Cafe used to serve, only much sloppier. While Gretchen had the gifts and dessert all ready for us when we got home, Scott and I ordered barbecue from the car. Casey, who’d spent his 13th birthday hanging with Gretchen’s younger son, was thrilled with his presents, with the BBQ, and with the cake, and declared it the “best birthday ever.”
Now, that kid is 23. And he’s riding in a Bike MS event in Maine. He’s trying to raise money for the National Multiple Sclerosis Society — for which I serve on as a trustee on my local board and as a volunteer advocate. It’s an organization which has financially supported nearly every new development in the MS field. On his fundraising page, Casey wrote that he’s participating in the Great Maine Getaway because he is “inspired by my mother’s courageous battle with multiple sclerosis.” He added, “Throughout her life, she has not only navigated the challenges of MS but has also become a beacon of strength and education within our community.” He also said a bunch of other really nice things about his old mom. *Blushing.*
I’m proud of him, as well as of my nearly-26-year-old son Jonah, and my husband Scott, who are participating in their second Bike MS event together. But since my diagnosis date is so closely tied to Casey’s birthday, I’m plugging his donation page. If you have someone in your life who struggles with MS, if you’d like to see a world without MS, please consider contributing to Casey’s bike ride.
It’s been 10 years. My symptoms may have worsened but my hope has not dimmed.
Some 700 walkers converged upon Worcester Technical High School on a warm Saturday morning in late April to raise awareness and money for multiple sclerosis research.
At Walk MS: Worcester, I had the privilege of hosting the event — using a finicky, hand-held mic which didn’t like the wind — where I was honored to spotlight a local woman’s story about her diagnosis of MS in the middle of the COVID-19 pandemic.
Tanisha Stevens, her husband, her two young daughters, her sister, and her best friend took to the stage as we celebrated her strength, her perseverance, and her loving circles of support. Circles were the big theme this year, hence pictures of people holding circles on plastic sticks: Orange for those with MS, green for those who love someone with MS, and yellow for those who work to support the cause.
Participants — some of whom dressed in very colorful, creative attire including orange tutus — said they felt a sense of camaraderie and really liked the message that no one is in this alone.
A week later, under mildly threatening skies, I hosted the Walk MS: Longmeadow event at Longmeadow High School in western Massachusetts. As someone who grew up in The 4-1-3 (the area code), I was so pleased to run into people who not only knew colleagues of mine, but also folks who knew my mom, Judy O’Brien, when she was the manager of two stores in Northampton, Mass. and appeared in regular “Wine Mother” segments on a local radio station.
I even met the effervescent, take-no-BS Judy Potter (second down on the right in the collage above) who pulled from her purse the op/ed I wrote which she’d ripped out of the paper that morning. After reading the piece — where I compared Taylor Swift’s “I Can Do It With a Broken Heart” to pretending all is well when you have MS — she said she, someone who’s had MS for decades, had to meet me. Turns out, Judy’s friends with the first editor I worked with at The Republican, Cynthia Simison, who later went on to run the whole operation, becoming the paper’s first woman to hold the post.
While the Longmeadow crowd was smaller than Worcester’s, it felt supportive and enthusiastic nonetheless, something I experienced acutely when an adorable, beefy bulldog practically knocked me over with excitement as I pet him just a few feet beyond the finish line.
So … yeah … I’ve been a tad incommunicado here on this blog where I said I’d be chronicling my nascent Liverpool fandom. I’ll share with you some of the reasons why because I like to hold myself accountable:
I spent December wrapping up the fall semester and grading dozens of submissions from students in my undergraduate journalism class and two master’s of fine arts classes. When I completed that task, I revised three syllabi and three sets of online course modules for the spring 2024 semesters for three courses.
Additionally, there was the whole Christmas holiday prep — buying presents for the family and spending hours wrapping, planning the menus for two holiday dinners, cooking/baking, cleaning the house, and squeezing in a mid-December trip to visit my daughter Abbey and her boyfriend Anthony in their Bronx apartment.
In addition to helping my senior citizen father with his weekly medicine, paying his bills, and taking him to his medical appointments, I had meetings for the National Multiple Sclerosis Society (where I’m a member of the local chapter’s Board of Trustees, as well as an MS Activist, which means I lobby state and federal officials for bills which help those with chronic illnesses). I also did some more research for my work-in-progress about a Massachusetts Millennial minister, and, this is my low-key announcement, started working with a publisher to prep my second novel for a February 2025 publication date.
So … yeah … maybe taking on this British football project was a tad too ambitious. I realized early in December that I just would not have the opportunity to pull together blog posts for each game I watched. And I did watch all but one Liverpool game since I last blogged about the Reds. (I missed the Dec. 6, 2023 game against Sheffield United — which Liverpool won 1-nil — because there were too many people logged onto our streaming account. We’ve remedied the situation by purchasing our Liverpool-fan son Jonah an online streaming subscription for Christmas.) I watched eight games during December and one on New Year’s Day in my Boston area home, in our family’s Cape Cod place, en route to and in church, at Sean’s Bar & Kitchen in New York City, and at an in-law’s house during a holiday event. I took notes while watching most of these contests, but lost the ones I jotted on a Sean’s Bar & Kitchen napkin.
The Reds have compiled an impressive record during the past 10 games, winning seven, tying two, and losing one, the Europa group league game vs USG, which my Chelsea-fan son told me didn’t matter because Liverpool was advancing out of group play anyway, so I’d say they had a good December, in spite of my blogging lapse.
While I’ll post some highlights from my notes below, one question has been haunting me over the over-packed month of December: How can fans possibly keep up with all these games? Do they watch all of these games or some of them?
I, for example, don’t watch every Boston Red Sox game, given that they have 162 of them a season, and I still call myself a fan. I think I’ve been unduly influenced by my Chelsea-fan son who’s of the mind that only real fans watch every football game. (Yes, he’s employed.) I now realize that it’s unlikely that I’ll be able to blog about every game, and that’s okay. I’ll still watch as many as I can, taking notes when I can, and posting as I can.
As a British football newbie, I still find all these concurrent tournaments — EFL, Europa, never mind players leaving to play for their national teams’ continental football tournaments (like Mo Salah leaving Liverpool to participate in the Africa Cup of Nations for much of January) — befuddling. I’m unaccustomed to trying to balance all of the competitions in my mind. I think following just the Premier League would be simpler, but my Chelsea-mad son has strongly implied that would be very “plastic” of me. And, God knows, I don’t wanna be plastic.
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.)
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!
Meredith OBrien 