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.

talkin’ political polarization in families at the southborough public library

I enjoyed a substantive discussion with the folks at Southborough Public Library about political divisions in families during the Trump era, as well as how to deal with aging parents who make decisions that negatively affect their health and/or their finances, major themes explored in Louie on the Rocks.

Prior to the Q&A, I gave a 20-minute speech about the impact of our intense political divisions on not just our families but on our local communities as well. Here’s an excerpt:

My Louie character is a proxy for MAGA voters who see the world in which they grew up transformed into something they don’t recognize. Louie was a blue-collar worker who never went to college but who married and put his daughter through school. He thinks the world has left him behind and he’s angry about that. He lashes out against things that challenge his world view, that make him feel insecure, that make him feel less-than. 

Helen represents that middle-of-the-road person who wants to love and stand by Louie for the wonderful things he’s done, but who also chastises him for the homophobic things he says and for supporting a candidate whom she believes spouts hatred. 

The Lulu character is a proxy for progressive voters who just want to be free to live their own lives. They don’t understand why who they love or what kinds of food they choose to eat triggers some people. Lulu’s anger that her mother failed to cut Louie out of her life because of the hatred he espoused, echoes the feelings of a large portion of Democratic voters, particularly younger ones.

We’ve divided ourselves into camps. The MAGA camp, the anti-Trump camp. The pro-ICE immigration raids, the anti-immigration raids. … 

There seems to be no common ground any longer, no place to stand where someone isn’t hurling names at you. There seems to be no way for people to calmly discuss issues without the discussion sinking into black-and-white terms. 

We’ve been pushed into these camps as a response to the success of the MAGA movement and its leader. Their successful tactics – using anger, resentment, demonization, the it’s-us-or-them – have been co-opted across the world. 

I appreciated seeing friends and neighbors — and even my state representative! — in the audience, along with members of the Friends of the Southborough Public Library. Public libraries are our gems!

talkin’ ’bout journalistic courage

GirlTalkHQ recently published my essay about why journalistic courage matters right now, as journalism is being threatened at a moment when we need its skepticism and truth telling more than ever.

It was inspired by watching Tony-nominated actor George Clooney who I met in New York City after seeing his phenomenal play, Good Night, and Good Luck, about how a CBS journalist, Edward R. Murrow, sacrificed his career in order to speak truth to and about U.S. Sen. McCarthy.

The essay begins this way:

I didn’t want a selfie. I didn’t want to grab George Clooney’s hand. I just wanted to tell him something.

I stood on 7th Avenue in Manhattan at the end of a long line by the Winter Garden Theater’s stage door after having seen “Good Night, and Good Luck.” Clutching the play poster I’d purchased while I waited for its star and playwright, I wasn’t there to fangirl but to deliver a message: “I teach journalism and I very much appreciate this show and how you’re standing up for the importance of journalism.” 

With a black “Good Night, and Good Luck” baseball cap tucked low on his dyed-black hair and oversized, tinted aviator glasses covering a substantial portion of his face, Clooney, the son of a journalist, signed my poster and responded to my message saying, “Well I appreciate anyone who teaches journalism.”

You can read the rest of the piece here.

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.

scenes from the natick barnes & noble

In early May, I thoroughly enjoyed a lively discussion about Louie on the Rocks at the Natick Barnes & Noble.

My UMass-Amherst roomie and bestie, Gayle Long Carvalho, showed us her English teacher side by asking insightful and probing questions about Louie’s many themes ranging from generational divisions and understanding the mindset of the lead character as a proxy for MAGA voters, to being the adult child of a parent who isn’t acting in his own best interest and what happens when one spouse in a long marriage dies and leaves behind someone who doesn’t know how to pay the bills.

Gayle was, in two words: rock star.

The lovely crowd boasted friends from Southborough, UMass, and even an MFA student of mine from the Bay Path University MFA creative nonfiction program who I met in the flesh for the very first time. Thanks to all who took the time out of your day to chat with us.

uncomfortably numb 2: ‘amazing resource’

MS Activist and Influencer Jodi Dwyer said the new multiple sclerosis anthology Uncomfortably Numb 2 would’ve been “an amazing resource” had she had it in her hands when she was first diagnosed.

That was the goal of this sequel to my MS memoir. It was to create a guide that I wish I’d had when I received my own diagnosis in 2014. Comprised of stories from patients with varying stages of MS, Uncomfortably Numb 2 includes stories from a woman who was diagnosed as a teen and a neurologist who treats adult and pediatric MS patients.