Multiple sclerosis challenges ranging from misdiagnoses and obtaining work accommodations, to advocating for chronic illness causes and writing from the patient perspective were chief among the many issues I recently discussed with two podcasters.
Southern California’s Dr. Brandon Beaber, a neurologist specializing in multiple sclerosis, chatted with me recently for his podcast about my new book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients, touching on topics like when or whether to tell people you have MS and what lessons I’ve learned since I was diagnosed in 2014. Spoiler alert: There’ve been a lot of them.
Meanwhile, podcaster RA Cook, a fellow author and western Massachusetts native, hosted me as a guest on her podcast, Well Done You. Our wide-ranging conversation addressed topics like writing and teaching journalism at the university level, to being a multiple sclerosis patient and advocating for issues facing those living with chronic illnesses.
I was honored to be a part of both of their podcasts.
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.
Baltimore-based author Leslie Gray Streeter and I met one another in 2020 just when our memoirs — mine, Uncomfortably Numb, and hers, Black Widow — hit the shelves. Our book promo plans upended by the pandemic, we joined a group of 70+ writers who all had books released at the same time, and we collectively tried to help one another.
A few years later, I met Leslie in person when I invited members of our writers’ group, Lockdown Lit, to a group book event at Tatnuck Bookseller in Westborough, Mass.
When it came time to solicit blurbs for Louie on the Rocks, her name immediately popped into my head because she and I are frequently liking one another’s posts on social media.
I also had the pleasure of reading an advance copy of her forthcoming novel, Family and Other Calamities. I LOVED it and can’t wait for others to have the delightful experience.
Here’s her full blurb:
Louie On The Rocks is a frank and, at times, blisteringly funny testament to the corroding influences of grief, addiction , polarization, regret and emotional abandonment. It’s told with multiple vivid voices giving witness to a tragic chain of events that might be stoppable – but probably aren’t.
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.
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.
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 