‘uncomfortably numb’ book launch marks start of ms awareness month

crowd at TatnuckII
Photo credit: Scott Weiss

Uncomfortably Numb: a memoir is … launched. Consider Multiple Sclerosis awareness month officially marked.

Scott intro
Photo credit: Suzanne Strempek Shea

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.

with Tommy Shea
Photo credit: Suzanne Strempek Shea

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.

Abbey flowers II
Photo credit: Scott Weiss

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.)

Abbey and Stephanie

I’m looking forward to the next book event: March 28 at 1 p.m. at the Holyoke, MA Barnes & Noble

health central q&a: living with ms

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To mark the beginning of Multiple Sclerosis Awareness month, HealthCentral interviewed me about my memoir — published today! — and how multiple sclerosis has affected me since my diagnosis:

In 2014, Meredith O’Brien was diagnosed with relapsing-remitting multiple sclerosis. The author, teacher, wife, and mother had spent more than two years seeking help for symptoms that were scary, strange, and unpredictable. 

In her new memoir, Uncomfortably Numb, O’Brien shares her emotional journey from health to illness to empowerment. We talked with her about her experience.

HealthCentral: What was it like coming to terms with an MS diagnosis?

Meredith O’Brien: It was a hard learning curve. Early on, I fought it because I was angry about the fact MS was impinging on my life and my ability to do things. I experienced a lot of fatigue, but I didn’t listen to my body. I continued loading my days with all these activities, and then paid the price of lying in bed afterward, feeling exhausted.

You can read the full interview here.

Image credit: Health Central.

ms-connected reviews of ‘uncomfortably numb’

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?

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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.

41iakd84kll._sx322_bo1204203200_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.

51texzznugl._sx314_bo1204203200_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.

21814Elissa 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.

header_aug2015revisedFinally, 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.

advance praise for ‘uncomfortably numb’

51-iodcld0l._sx330_bo1204203200_I’m deeply honored that several fellow writers have been kind enough to write blurbs for my forthcoming memoir, Uncomfortably Numb.

Take author Jessica Fechtor. When she was a 28-year-old graduate student, an aneurysm in her brain burst, leaving her with a long and difficult road to recovery. Fechtor deftly shared the story of her arduous journey in her bestselling memoir Stir: My Broken Brain and the Meals That Brought Me Home. I greatly admired Stir, so it meant a lot to me to read what she had to say about my story:

Meredith O’Brien’s Uncomfortably Numb is a rare window into everyday life with multiple sclerosis, and how chronic illness can turn one’s very identity inside out. The illness is unpredictable: an initial diagnosis takes years to materialize, symptoms may or may not signal the progression of the disease, and treatments are imperfect. With candor, O’Brien bares her most vulnerable moments as she learns the new rules of working, parenting, and living in the present when the future is uncertain.

paperbackcover_smallThen there’s Maya Dusenbery — author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick — who also did me a solid with this blurb:

Uncomfortably Numb tells a sadly all-too-common story: of a woman whose symptoms were initially dismissed by doctors before a life-changing diagnosis. Frank and relatable, it will speak to anyone who knows the uncertainty that chronic illness brings and the resiliency it demands.

Author Trevis Gleason, a fellow multiple sclerosis patient himself, chronicled the devastating impact the disease has had on his own life in Chef Interrupted: Discovering Life’s Second Course in Ireland with Multiple Sclerosis. He graciously offered this about Uncomfortably Numb:

41phsdlnmjl._sx311_bo1204203200_A modern telling of the newly diagnosed story from a no-nonsense journalist, a gifted writer, a pragmatic New Englander. While uniquely her own — by definition — there will be few who have or know chronic illness who will not glimpse well-told aspects of their own experience in this memoir. Uncomfortably Numb is heart-breaking, it’s harrowing, and it’s heroic.  What is is not is candy-coated. Refreshingly honest, unguarded, and reflective about what is, arguably the most difficult half decade in Meredith O’Brien’s colorful life.

Thank you so much Jessica, Maya, and Trevis.

Image credits: Amazon.

writer andrea buchanan calls memoir ‘heartening’ & ‘frank’

Beginning of EverythingNew York Times bestselling author and memoirist Andrea J. Buchanan was kind enough to read an advance copy of my book, Uncomfortably Numb, and to share her thoughts about it.

Given that Buchanan struggled for over a year with the devastating impact of a tear in the membrane protecting her brain and spinal cord — as detailed in her memoir, The Beginning of Everything: The Year I Lost My Mind and Found Myself her words about my MS-centric book mean a great deal:

Meredith O’Brien writes deftly and gracefully about the shock of becoming an unreliable narrator as she navigates both disbelieving doctors and the challenges of her own changing brain in the process of searching for answers to the concerning symptoms she experiences. A journalist by training and a writer by nature, she fearlessly investigates, contemplates, and confronts her diagnosis of multiple sclerosis as she learns to adapt to her body’s new way of being in the world. Her frank look at what this process is like for both herself and her family will be heartening to anyone who has lived with the uncertainty of chronic illness.

Uncomfortably Numb: a memoir, goes on sale March 3.

Image credit: Amazon.

‘dietland’ author lauds ‘uncomfortably numb: a memoir’ for its ‘clear-eyed and courageous voice’

UNCOMFORTABLY_NUMB_COVER reduced sizeIt’s coming.

In less than a month.

My memoir will be available for sale.

At the beginning of Multiple Sclerosis awareness month.

This is more than slightly terrifying. My memoir, Uncomfortably Numb, is the most personal work I’ve written to date. Hopefully folks will embrace its vulnerability and dark humor. I’ve got my fingers and toes crossed. Tightly.

Dietland coverMeanwhile, it gives me a shot of confidence that Sarai Walker, the author of the much-praised Dietland (yes, the book that was made into a TV show), has kind words for Uncomfortably Numb. In fact, my publisher put an excerpt of Walker’s blurb on the cover.

Here’s Walker’s full blurb:

In Uncomfortably Numb, Meredith O’Brien writes unflinchingly about her life before and after her MS diagnosis. Detailing her treatment, her struggles to be taken seriously by doctors, and the effects of it all on her family, career and sense of self, she writes in a clear-eyed and courageous voice, bringing the reader along with her as she navigates this profound, life-altering experience.

Thank you Sarai!

Image credits: Wyatt-MacKenzie Publishing and Amazon.

 

 

 

new ms-related pieces: diagnosis story & chronic illness lit

Screenshot 2019-11-05 10.03.42I’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.

istock-846475966Chronic 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.

of black holes & brain damage

black holeThe 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.

new post: when ms messes with your sense of taste

The National Multiple Sclerosis Society published my recent post, “A Loss of Taste,” about my vanishing ability to taste foods, as comfort food that I once enjoyed now give me nothing but disappointment.

Here’s an excerpt:

Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.
 
What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found.
 
Over the past two years, my ability to taste these favorites has gradually diminished. More recently, it significantly ebbed to the point where several food and drink items no longer taste familiar. The caramel-flavored coffee I bought the other week? It was outright disgusting in my mouth.
 
Is MS the culprit? My taste thief?

Read the rest of the piece here.

Image credit: National Multiple Sclerosis Society.

after you’re diagnosed with an illness: you suddenly notice it everywhere

iStock-961375112Way back in the late 1990s, when my husband and I were in fertility treatments, it seemed as though pregnant women were everywhere. In stores. On city streets. On TV and in movies. In my friend groups. At family gatherings.

When I was so craving a child — and failing to conceive one — seeing so many gestating women felt like grains of salt in an open wound. I distinctly remember trying to escape all things maternal on Mother’s Day 1997 when the angst of my infertility felt especially potent. I opted to watch NBA games. Certainly I could seek refuge from babies and all things maternal there. Wrong. Pre-recorded segments of athletes thanking their moms for all their support over the years were featured during breaks. Until I eventually became pregnant with twins, reminders of my infertility seemed painfully omnipresent.

I was reminded of those days after I was diagnosed with multiple sclerosis in 2014 and suddenly started paying close attention to every reference to the disease, whereas in the past, they’d whisk past me like the wind. The MS references I saw in pop culture in those early months after my diagnosis, were almost always dire and sent urgent pangs of fear about my future through my heart.

The National MS Society recently published my piece, “Fever Fatale” about this subject on its MS Connection. Here’s an excerpt:

“A fever could be life threatening.”
 
That single line from an old episode of “The West Wing” prompted me to immediately Google whether, in fact, a fever is fatal to someone with relapsing remitting multiple sclerosis, something with which I was diagnosed in the summer of 2014. Fresh from learning I had MS, this mere suggestion plunged me into a panic. A search of “fever and multiple sclerosis” yielded over 590,000 results.

Read the rest of the piece here.

Image credit: MS Connection.