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!
One of the many aspects of having multiple sclerosis that rattle me is the fact that I have to endure regular MRIs of my brain and spine to determine if MS has caused new damage and whether my current disease modifying medication is still working.
For some folks, this isn’t a big deal. They lie down on the scanning bed, allow themselves to be tucked in with a soft blanket, listen to music through special ear buds, and are perfectly content inside that narrow MRI machine tube for anywhere from a half-hour to an hour-and-a-half (depending on what’s being scanned).
I am not one of those people.
If you are claustrophic like I am, these scans can be a nightmare.
I spoke with a writer from the National Multiple Sclerosis Society’s Momentum Magazine about how I’ve learned to cope with my MRIs without having a panic attack. This doesn’t mean I like these scans any more than I ever did, or that I no longer experience the strong desire to flee once I’ve been delivered inside that machine. I’ve just figured out what I need to do in order to get through it.
Here’s how the story begins:
Meredith O’Brien won’t soon forget the magnetic resonance imaging (MRI) scan she had in 2014. “I didn’t know my head would be locked down in a hard plastic ‘face cage,’” she says. When she told the technician she was claustrophobic, he directed her to a mirror she could use to see around the room. “I know he was trying to be kind, but I had a panic attack,” says O’Brien, 51, a Boston-based writer with relapsing-remitting multiple sclerosis (RRMS). She ended up removing the blankets given to her and getting out of the machine to calm down before trying again.
Here’s a link to the whole story: https://momentummagazineonline.com/7-tips-for-getting-through-an-mri-if-you-have-ms/
Image credit: Momentum Magazine.
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.
Why?
I was petrified to sit, face-to-face, with my potential future.
Read the whole piece here.
Uncomfortably Numb: a memoir is … launched. Consider Multiple Sclerosis awareness month officially marked.
My husband Scott kicked off the event at Tatnuck Bookseller — shout out to independent book stores! — as he comically lamented the lot of those who are married to writers and who ultimately see bits of their lives used as grist for books and articles. (He’s a very good sport about it.)
After detailing how I came to write the memoir, I read a few excerpts and later signed copies.
I was honored to meet two fellow MS patients who shared their experiences with me. Hopefully I’ll meet many more as I continue to promote Uncomfortably Numb.
My daughter Abbey and her college roommate Stephanie helped out at the book table, where we collected donations for the National MS Society. (My son Casey, it should be noted, surprised me by coming home from school to celebrate the release.)
I’m looking forward to the next book event: March 28 at 1 p.m. at the Holyoke, MA Barnes & Noble.
I’ve been furiously updating my Google calendar to add new book-related events to promote my memoir, Uncomfortably Numb (released on March 3).
Here’s a list of what I have scheduled thus far:
Book launch: March 7, 1-3 p.m., Tatnuck Bookseller, Westborough, MA
My first event for Uncomfortably Numb is a March 7 book talk and signing at Westborough, MA’s independent bookstore, 18 Lyman Street, Westborough.
The event runs from 1-3 p.m. Light refreshments will be available.
I’ll be collecting donations for the National Multiple Sclerosis Society.
Book talk: March 26, Northborough, MA Lyceum
I have been invited to talk about the impact the Southborough middle school music program had on two of my children as chronicled in my 2017 nonfiction book, Mr. Clark’s Big Band: A Year of Laughter, Tears & Jazz in a Middle School Band Room.
The book examined how a larger-than-life music teacher helped his grieving students in a small Massachusetts town find strength and peace through the creative expression in their music and the camaraderie of the band room.
The talk — whose details are still being worked out — will take place in Northborough, MA.
Book talk/signing: March 28, 1 p.m., Barnes & Noble, Holyoke, MA
I will be heading back to western Massachusetts — where I grew up and went to college — to promote Uncomfortably Numb at the Barnes & Noble, 7 Holyoke Street, Holyoke, MA (near the Holyoke Mall).
The event begins at 1 p.m.
I will be collecting donations for the National Multiple Sclerosis Society.
Book talk/signing: April 9, 7 p.m., Southborough Public Library, Southborough, MA
I will be discussing why I wrote Uncomfortably Numb and will read aloud from the memoir at the Southborough Public Library, 25 Main Street, Southborough.
The event starts at 7 p.m.
***
I’m working on scheduling other events and will post them when plans are nailed down.
Several people with ties to the multiple sclerosis community graciously agreed to take a look at advance copies of my MS memoir, Uncomfortably Numb, which will be published on March 3, during MS Awareness month.
Of all the folks I asked to take a look at the early version of the book, I really wanted to know what people who have lived with MS — or know a great deal about it — had to say about my chronicling of my initial symptoms and eventual diagnosis of relapsing remitting MS, as well as the struggle with how the disease changed my life. Did it ring true to them?
Award-winning health blogger, Cathy Chester, who writes about her decades-long experience with MS at An Empowered Spirit, said this about Uncomfortably Numb:
Meredith O’Brien’s fourth book, Uncomfortably Numb, may be her most important. It is an intimate, generous memoir of living with MS that will guide newly-diagnosed patients and their loved ones through difficult challenges.
Poignant and thoroughly readable, Uncomfortably Numb is a deeply personal look at how the diagnosis of a debilitating illness such as MS profoundly affects patients and their families. It is also the story of a strong woman who is learning to adapt and is determined to persevere.
Author Diane Cook, whose memoir So Many Angels: A Family Crisis and the Community That Got Us Through It details her family’s experience with her husband’s arrest and her diagnosis of multiple sclerosis, wrote about Uncomfortably Numb:
Meredith O’Brien’s courageous memoir chronicles her struggles leading up to her MS diagnosis, including one doctor telling her that she should simply “de-stress,” then her battle with the symptoms. O’Brien’s tenacity shines through on every page. While managing the MS she continues to work, takes care of her … parents, and raise her children. The author refuses to give in to the many challenges that life throws her way. An inspiring read.
A woman I’ve gotten to know well through her position as the president of the Greater New England chapter of the National Multiple Sclerosis Society, Lori Espino, wrote:
A candid, in-depth look at one woman’s journey with MS and how it touches those around her. A great read for anyone struggling with chronic illness from diagnosis, through acceptance and into thriving in the new normal.
Award-winning author Savannah Hendricks — whose late mother had MS — wrote a novel, Grounded in January, in which the main character has multiple sclerosis. She offered her take on Uncomfortably Numb:
A memoir penned with such truth you won’t know if you should keep reading or pause to shed a tear, Meredith O’Brien showcases the individual effects of the debilitating reality for those facing multiple sclerosis. Not only does the author tackle the painful veracity of the disease, but provides reminders of how critical the healthcare system is to those in need. The truth of MS is as difficult to overcome as the disease is to diagnosis by health care professionals who sideline symptoms mimicked by other diagnoses.
Elissa Grossell Dickey, who blogs about MS for the National Multiple Sclerosis Society and whose novel about an MS patient, The Speed of Light, is set for publication next year, penned this:
Uncomfortably Numb is a moving story that is both achingly familiar to someone living with multiple sclerosis and yet unequivocally Meredith O’Brien’s personal tale of a life changed by a devastating diagnosis. Weaving in the added tragedy of personal loss, O’Brien writes with the measured curiosity of a journalist and yet with a raw vulnerability, giving an honest, unflinching look at navigating life with chronic illness. With courage and tenacity, O’Brien details the frustrations of not being believed by health care providers; dealing with unpredictable, life-altering MS symptoms; and the struggle to hold on to her previous identity, both in her career and her family. Rich with compelling story-telling, Uncomfortably Numb is a triumph that will take readers on an emotional journey and leave them with hope.
Finally, award-winning MS blogger Caroline Craven, Girl with MS, said this:
Meredith O’Brien’s journey is beautifully expressed in reality that only someone with MS understands — a must read for anyone with multiple sclerosis or connected to MS. O’Brien effectively shares what a life with MS can be like. Often, the words could come from my own experience with MS over these past twenty years. The challenges and fears and frustrations she shares with unrestrained honesty. At times, I am brought back to my own diagnosis and initial illness. I was back in the MRI, experiencing the nightmares of some doctors and finding relief in the love and nurture that can be occasionally found.
O’Brien nails it with her ability to connect. To life. To MS. To her own honesty. The normal and not so normal.
Reading O’Brien is like stepping into my own skin fifteen, twenty years ago: The meltdowns, the stress, the unknowns. Anxiety arises reminding me of those times, the utter fear of my body letting my down, of it failing. The fear it brought and the beauty it finally produces. We are diamonds in the rough finding our brilliance through turbulence then love.
… [O’Brien] doesn’t tell what MS – she shows us with her words, her stories. The self care she takes proves beneficial — writing notes, keeping journals, reliable resources. They all add up. She takes command of her disease and the information/research available to her.
This is a book to be read now. It touches on all aspects of living with MS and what we as patients need to know.
Thank you so incredibly much Cathy, Diane, Lori, Savannah, Elissa and Caroline.
I’ve written two new pieces about multiple sclerosis and chronic illness for your reading pleasure:
HealthCentral: Diagnosis story
How and why did it take two years from the initial onset of symptoms for the medical community to diagnose me with multiple sclerosis? This essay details my journey to learn something that would change the course of my life.
Chronic illness lit: Finding solace between two covers
Over on the National Multiple Sclerosis Society’s MS Connection blog, I paid homage to writers who’ve shared their stories of strength and struggle while living with chronic illnesses. When you’re feeling down, reading about the experiences of others can provide an existential balm.
An excerpt:
Sometimes I just need to relate.
I need to see my experiences, my struggles confirmed instead of negated and misunderstood. I need to remind myself that I am not alone in my fatigue, in bouts of cognitive fuzziness, in my hair-pulling frustration.
I have been reading books written by those who are living with multiple sclerosis and other chronic illnesses. I’ve been quite voracious about it, collecting these tales as a way to see myself reflected, helping me feel seen and heard.
Works I noted as being inspirational include: the collection of stories Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine; Sonya Huber’s Pain Woman Takes Your Keys, and Other Essays from a Nervous System, and Andrea J. Buchanan’s The Beginning of Everything: The Year I Lost My Mind and Found Myself. (My praise for Nicola Griffith’s So Lucky — a novel about a character with MS who solves a murder mystery — got edited out of the final piece.)
Read the rest of the essay here.
Image credits: HealthCentral and MS Connection.
The National Multiple Sclerosis Society has published my latest piece, “Black Holes” on its MS Connection blog.
The essay was inspired by the historic image taken of a black hole in April. Here’s an excerpt:
It looked like a glow-in-the-dark doughnut.
When the first image of a black hole 55 light-years away from Earth was made public by astronomers this spring, it was heralded across the globe. Astronomers, the New York Times reported, had “captured an image of the unobservable: a black hole, a cosmic abyss so deep and dense that not even light can escape it.” The writer described the image as “a smoke ring framing a one-way portal to eternity.”
The very idea of “a one-way portal to eternity” is terrifying in an end-of-the-world, Game of Thrones kind of way.
The very idea of a black hole becomes intimately and individually terrifying when you learn that you are carrying one around inside your brain. This is a real possibility for those with MS.
Read the full piece here.
Image credit: MS Connection.
Meredith OBrien 