Month: July 2025

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.

tidepool bookshop in worcester hosts ‘louie’ talk

The lovely indie store TidePool Bookshop in Worcester kindly provided me the opportunity to chat about Louie on the Rocks with longtime journalist and former opinion editor of the Worcester Telegram & Gazette, Tony Simollardes.

Tony also reflected on his Clark University writing students’ reactions to various Louie threads as I’d spoken with his class earlier in the semester. One poignant question one of his students asked asked made me realize something. Beyond the obvious connection between the deceased mother, Helen, in the novel, and my own mom who passed away in 2014. I realized that, perhaps, I was trying to imagine having conversations with my mother about the events of the day through the Helen character. (My mom would’ve been epically peeved by everything that’s been happening, just like Helen.)

genx & older millennials need a guide to parenting our parents

The Fort Worth Star-Telegram recently ran an opinion piece I wrote about the challenges faced by GenXers and older Millennials who are caring for aging parents, many of whom belong to the massive Baby Boomer generation that’s fond of drinking and predicted to develop dementia at higher rates than prior cohorts.

Here’s an excerpt:

All of us [GenXers] have arrived at the stage of our lives where we’ve become the glue holding the generations together. We host the holiday events. We keep everyone up-to-date on family news, like the family town crier. This being-the-glue-of-the-family seems to have happened slowly, then all at once. We went from being the ones with the lives built around raising our children and trying to advance our careers to the ones who’ve added parenting our parents to our to-do lists.

… Yet as we enter this new era of our lives, guidance is sparse. How-to books on raising kids tend to top out at the teenage years. There isn’t much guidance on how to give young adult children the support they need while simultaneously respecting their autonomy and trying not to anger them. Meanwhile, we’re doing the same thing with our parents, most of whom are living solo for the first time after decades of marriage. We’re trying to give them the support they need while simultaneously respecting their autonomy and trying not to anger them.

Read the full piece here.

podcasting with ra cook & ms doc brandon beaber

Multiple sclerosis challenges ranging from misdiagnoses and obtaining work accommodations, to advocating for chronic illness causes and writing from the patient perspective were chief among the many issues I recently discussed with two podcasters.

Southern California’s Dr. Brandon Beaber, a neurologist specializing in multiple sclerosis, chatted with me recently for his podcast about my new book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients, touching on topics like when or whether to tell people you have MS and what lessons I’ve learned since I was diagnosed in 2014. Spoiler alert: There’ve been a lot of them.

Meanwhile, podcaster RA Cook, a fellow author and western Massachusetts native, hosted me as a guest on her podcast, Well Done You. Our wide-ranging conversation addressed topics like writing and teaching journalism at the university level, to being a multiple sclerosis patient and advocating for issues facing those living with chronic illnesses.

I was honored to be a part of both of their podcasts.

Be sure to follow Dr. Beaber’s podcasts here and RA Cook’s podcasts here.