why did i wait so long to join a support group?

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.

stat column asks: should you tell your employer you have ms?

Screenshot 2020-03-28 15.13.08While I was gearing up to promote my memoir —Uncomfortably Numb, about the life-altering impact of my multiple sclerosis diagnosis — I realized I should probably tell my employer about both the memoir and the chronic illness.

Thus far, I haven’t had to ask for any accommodations, although I do have a handicapped parking pass to use on campus when I need it. But I thought it would be best if I told the administrator who runs my department in person. (This was well before the coronavirus caused nationwide school shut-downs.)

It prompted me to write an essay which was published by STAT News. The piece starts this way:

As I prepared to tell my employer that I have relapsing remitting multiple sclerosis, I worried about what to expect.

Maybe I’d get a shocked look from the administrator who oversees the department where I teach part-time. Or maybe I’d be quietly phased out, informed that future teaching opportunities have dried up.

This “big reveal” would be, according to multiple sclerosis advocates, a risky move.

Read the rest of the essay here.

Image credit: STAT News.

READ: ‘uncomfortably numb’ excerpt at healthcentral

Screenshot 2020-03-28 15.01.36In honor of Multiple Sclerosis Awareness Month, the HealthCentral website has published an edited excerpt of Uncomfortably Numb.

Here are the first few lines:

There’s something weird going on with my leg.

I’m interviewing a middle school band director for a book I’m working on, but something doesn’t feel right on my leg and I can’t stop thinking about it. I brush my left calf across my right shin to compare the sensations. The right leg is positively brimming with feeling by comparison.

Yeah, that’s not right. 

After the interview is over, I walk to my car. Now that I’m alone, I can fully focus on how odd the skin on my left shin feels — how the hem of my linen capri pants feels, as though it’s rubbing evenly across my right shin and calf, but not so with my left. I close my eyes and focus on my legs.

Does it feel different on my left? Does it really? Is this just something strange that will go away?

Read the full excerpt here.

Image credit: HealthCentral.

virtual book tour for ‘uncomfortably numb’ continues: book giveaways & an instagram takeover

Screenshot 2020-03-28 13.11.01As I’ve seen events to promote my medical memoir Uncomfortably Numb canceled due to the coronavirus pandemic, I’ve been so grateful for the work of many people who are stepping in to fill the void.

Several woman have been extremely generous in helping me spread the word about my medical memoir through their online book groups.

Ashley Spivey’s book club: Instagram takeover

Self-proclaimed book nerd Ashley Spivey allowed me to take over her book club’s Instagram account this past week to promote Uncomfortably Numb.

Screenshot 2020-03-28 14.31.23I’m new to the world of Instagram stories, so it took me a little bit of time to figure out how to layer words atop the images and then throw music into the mix, like combining UB40’s “Red Red Wine” with a snapshot of my mother (whose death is featured in the memoir) sucking down a glass of red wine.

I had to create visual ways of conveying the experience of writing and researching my memoir, including shooting quasi-awkward videos of myself explaining my process. In addition to a photo of my mom –who was given the nickname The Wine Mother by a local radio DJ, I posted a pic of the bathroom where my biggest MS attack took place, a photo of my family on vacation in Los Angeles just before two MS attacks, and an illustration that I first saw on actress & MS patient Selma Blair’s Instagram account (created by artist Erica Root) depicting MS symptoms.   

You can see highlights from my Uncomfortably Numb Instagram takeover here.

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Readers Coffeehouse Facebook book group: Book giveaway

Prolific author Kimberly Belle — one of the founders of the Facebook book group Readers Coffeehouse — has been instrumental in the “authors helping authors” movement, assisting those whose book events were canceled in the wake of the coronavirus spread.

After she shared my book with her club members, I engaged in lively online discussion with them before giving away two signed copies.

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Annie Horsky McDonnell, of The Write Review: Gives kudos to the memoir

After our recent flash-interview on The Write Review, Horsky McDonnell wrote a short review of Uncomfortably Numb.

“Wow! This book should be read by anyone with Multiple Sclerosis, or other autoimmune disease,” Horsky McDonnell wrote. “… It is a book that is going to help so many people needing a voice to hear when they get their diagnosis with MS, or even a loved one does. It will certainly bring comfort to know they are not alone! After my interview with her, I trust she will be a huge voice for Multiple Sclerosis. I cannot get her out of my head, and I’m sharing her book with my doctors!!”

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Yellow Brick Reads Facebook group: Book giveaway

Led by Jady Bernier Babin, members of the Yellow Brick Reads Facebook group vied for a chance to win signed copies of Uncomfortably Numb by sharing ways (other than reading, which, of course, we all adore) they are coping with being asked to shelter-in-place so as not to spread Covid-19.

I was honored to virtually converse with Yellow Brick Reads folks, as well as with the members of Readers Coffeehouse, The Write Review and Spivey’s book club.

Thank you Jady, Kimberly, Annie and Ashley for your support!

 

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.

‘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.