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.”
Reuniting with deeply-admired colleagues is always a joy. Reuniting with colleagues who leave you feeling like a rock star is utterly fabulous.
Such was my feeling after Suzanne Strempek Shea — my former newspaper colleague, writing mentor and fellow MFA creative nonfiction writing instructor — interviewed me for a book talk about my novel, Louie on the Rocks, at the Odyssey Bookshop in South Hadley. Suzanne has an uncanny ability of asking incisive questions that frequently give me pause and make me wonder why I’ve never thought of that particular angle before.
Our back-and-forth, as well as the questions from attendees, focused a great deal on the subjects of my vacillating between different writing genres, and how I rendered on the page an authentic depiction of people who hold different political beliefs than I hold. That’s a question I’m getting a lot. It’s no secret that I’m adamantly opposed to all things MAGA and what’s happening under the Trump administration, but when I was developing the character of Louie Francis, I placed my personal politics inside a box and shoved aside. My charge was to create a fully-developed character and figure out how he thought. Additionally, I wanted to illustrate that, in spite of our currently polarized climate, Louie wasn’t and shouldn’t be perceived as just one thing, as just a MAGA dude. He was a good and supportive husband, a loving son-in-law, a reliable employee, and a respected volunteer in his community. Writing Louie required me to think more fulsomely about the layers and texture of his life, not simply through the lens of his politics.
Afterward during the book signing portion, I had the chance to chat with folks and was thrilled to see my very first friend in my hometown of West Springfield there in attendance — Gina! — as well as two pals from my UMass-Amherst days. And the support from the Bay Path University MFA in Creative Nonfiction community, wow, it made me feel blessed. In addition to Suzanne, there was her husband Tommy Shea (who mentored me when I was a young newspaper reporter), former MFA director Leanna James Blackwell, and Anne Pinkerton, with whom I had classes when I earned my own MFA from Bay Path.
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.
The Springfield Republican, the newspaper for which I used to work — in its Westfield bureau covering the hill towns as well as Southwick, Massachusetts, and in its Springfield office while covering West Springfield — graced me with a story about Louie on the Rocks which explored the political polarization which stressed and already-fragile father-daughter relationship that was on the edge of complete rupture.
It also gave a shout-out to the March 6, 7 p.m. book event I have slated in western Massachusetts, in South Hadley’s Odyssey Bookshop with one of my beloved former newsroom colleagues: Suzanne Strempek Shea, who’ll be in conversation with me at the event.
Included among the attendees were MFA in creative nonfiction students of mine from Bay Path, as well as a dear friend from my Massachusetts hometown, and even a relative from the Philly area.
It was a meaty conversation and no, I didn’t spend most of the time looking like I was casting a Harry Potteresque spell that the still image above might suggest. A review of the video, however, shows me how much I use my hands when I talk.
The Washington Independent Review of Books gave kudos to Louie on the Rocks in a recent review saying, “With sharp, clear prose and a grounded tone, [O’Brien] captures a fascinating snapshot of American dysfunction in the Trump era.”
The review concludes this way:
“For readers of all political stripes, much of Louie on the Rocks will likely feel familiar. Lulu groans at the cruel memes and insults her father posts on Facebook, a platform that thrives on discord and hatefulness. Louie doesn’t see a problem. It’s easy to imagine this book one day — when MAGA inevitably recedes — being categorized as a simple, occasionally over-the-top satire. Future readers, laughing at the absurdity it portrays, may not understand just how true to life it is.”
In spite of ominous snowy weather outside, I was thrilled that friends, family, and interested readers showed up to Tatnuck Bookseller in Westborough, Mass. help me launch Louie on the Rocks into the world.
Fellow UMass-Amherst alum Kevin Koczwara — who once took a media criticism class with me there — asked ample creative and probing questions about political polarization, journalism, and family conflicts.
As I signed copies of books, a number of people shared that they, like the Francis family in Louie, have experienced family angst and division in the Trump era (both the current one and the previous one). I told them I hoped that, as they read the novel, that they feel seen and understood.
Lots of book events coming up to promote Louie on the Rocks.
Incredible writers — with connections to western Massachusetts, to UMass Amherst, and to Bay Path University’s MFA program in creative nonfiction — have graciously agreed to appear with me. I’m very appreciative of their time.
Meredith OBrien 