Tag: multiple sclerosis awareness

celebrating the rock star contributors to uncomfortably numb 2: sarah, noelle & paige

My latest book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients, is chockfull of stories, some inspiring, and some enraging.

It’s only because MS patients and professionals were willing to take the time to answer my questions, share their experiences — some of them excruciatingly personal — that I have this book at all.

I want to express my boundless appreciation to the folks who made Uncomfortably Numb 2 possible. Today’s post is dedicated to three of the contributors: Sarah Quezada, Noelle Connolly, and Paige Butas.

I met Sarah Quezada in Washington, D.C. this past March when we were both volunteer patient advocates for the National MS Society getting ready to descend on the Capitol to plead with our elected officials to protect Medicaid from steep cuts and to maintain the bipartisan, $22 million MS research program through the Department of Defense. Sarah met her task with enthusiasm and determination. She is a force. She has not only cultivated an online following for her Instagram page MSfitmomma, but she uses her voice to speak up for those who will be affected by various government policies.

Noelle was a young teen away at school when she started to experience what would later be considered multiple sclerosis symptoms including numb feet, difficulty walking, nerve pain, and fatigue. At the time, she was dismissed as “a dramatic, 17-year-old blond girl.” It took until she was 23 and couldn’t control her left hand for her to receive the MS diagnosis. Now, Noelle, who has an Instagram account called MS.LivingBalanced is a powerful advocate for focusing on what one CAN do while living with MS. For the past several autumns, she’s participated in the Greater New England Chapter of the National MS Society’s fashion show, taking to the runway with her mobility devices. “I still make a difference,” she says, “and I’m still valued.”

Paige Butas wasn’t a casual weekend warrior. An endurance athlete who seriously competed in triathlons, when she was in her late thirties she suddenly experienced numbness on her head “that spread down the entire right side of my face over the course of a week,” in addition to “auditory hallucinations.” A physician told her she might develop MS saying, “It’s not a matter of if but when you have another episode.” It took four years for her to get the officials MS diagnosis. She handled her frustrations and deep disappointment about the changes multiple sclerosis made to her life by channeling them into TikTok videos meant to educate and provide community to fellow MSers. Here’s her TikTok account.

comfortably chatting about uncomfortably numb 2 & louie on the rocks with jon and john

I was fortunate enough to speak with two different hosts about my two latest books, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients, and my novel, Louie on the Rocks.

On the week when we mark World MS Day, RealTalk MS host Jon Strum and I chatted about my new anthology of MS patient stories, about the power of advocacy for patients who often feel powerless in the face of their illness, and about trying to come to terms with the uncertainty that is the multiple sclerosis diagnosis.

Meanwhile, The Culture Buzz host John Busbee and I discussed my inadvertently of-the-moment novel, Louie on the Rocks, a vodka-soaked tale about an estranged father-daughter duo on opposite ends of the political spectrum.

I appreciate the spotlight these two folks put on my latest creations.

uncomfortably numb 2: an anthology is now on sale

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.”

Contributors include:

Author Elissa Grossell Dickey

MS Influencer/Advocate Sarah Quezada (MSfitmomma)

MS Influencer Paige Butas (MSfighter101)

MS Influencer/Advocate Noelle Connolly (MSLivingBalanced)

Greater New England MS Chapter Trustee Eddy Tabit

Artist and Author Lydia Emily

MS Support Group Co-Leader Dianne B.

Dr. Tanuja Chitnis, MS neurologist at Mass General Brigham and Women’s Hospital

Laura Hoch, an MS Society state policy and issues advocate

podcasts, youtube series feature ‘uncomfortably numb’

I rang out the wretched 2020 and rang in 2021 with interviews about Uncomfortably Numb: a memoir with podcasters and the host of a YouTube series.

We talked about adjusting one’s life to an unexpected turn of events (like having the world shut down because of COVID, as well as, obviously, getting diagnosed with multiple sclerosis), the impulsive decisions we can make when we’re under stress (like “panic adopting” a puppy just months after getting diagnosed with MS, as many folks have done amid coronavirus shut-downs), and the impact of about writing about very personal topics.

Spoonie Author Podcast

Dianna Gunn, of the Spoonie Author Network — a network “devoted to sharing the stories of disabled, d/Deaf, neurodiverse authors (and/or authors who manage mental illness and/or chronic conditions) and educating abled people about what life is like for us as ‘Spoonie’ creatives” — conducted an interview with me where we discussed how a multiple sclerosis diagnosis upended my life and forced a stubborn me to pace myself when it came to my day’s activities (something with which I’ve had mixed results).

The Situation and the Story Podcast

Weeks later, Chris Moore, of The Situation and the Story Podcast — which interviews authors about “the ways our various identities and intersectionalities inform our stories and make us who we are” — chatted with me about writing this intensely intimate memoir which covers rough emotional terrain, from my own illness and questions about who I’d be as a writer if some of my symptoms worsened, to the death of my mother with whom I had a challenging relationship.

Dr. Brandon Beaber’s YouTube Multiple Sclerosis Channel

Then I heard from a California-based neurologist who specializes in multiple sclerosis, Dr. Brandon Beaber, who asked if I’d speak with him about Uncomfortably Numb and my experiences as an MS patient.

Dr. Beaber, the author of Resilience in the Face of Multiple Sclerosis, has a YouTube channel packed with informational videos about all things multiple sclerosis.

Thank you, thank you, thank you to Dianna Gunn, to Chris Moore and to Dr. Brandon Beaber for the time you spent discussing Uncomfortably Numb.