‘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

upcoming events: first memoir event 3/7

Tatnuck eventI’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.

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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.

Southborough library event flyer

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.

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.

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.

an issue of chronic illness & transparency

A new post I’ve written for the National Multiple Sclerosis Society’s blog, MS Connection, explores the issue of how open someone should be when they have an invisible illness.

Do you tell everybody about your illness, immediately? Do you incrementally parcel out the info about what’s happening to you on an as-needed basis? Or do you only tell people when your symptoms force you to become public?

These are questions with which I still wrestle.

An excerpt:

Do I walk over and explain to the dude in the garage—the one who’s been giving me the stink eye ever since I pulled into a disabled parking spot—that, while I appear to be healthy, I actually have MS?
 
Do I tell my students what’s going on when I’m pressing my icy drink against my neck to cool me off while I’m teaching inside an overheated classroom, fretting about whether my MS heat sensitivity will flare up?

I face these situations quite frequently, wondering whether I should explain my MS to people so they will understand my actions and reactions, or if I should just keep quiet.
 
Four years into my MS odyssey, I haven’t yet found the sweet spot.

Read the rest of the post here.

Image credit from 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.