Tag: MS diagnosis

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.

boston globe features ‘uncomfortably numb’

Screenshot 2020-05-13 11.15.22

Boston Globe writer Kate Tuttle recently interviewed me about how and why I wrote my memoir, Uncomfortably Numb.

The piece, published online and in the print, included this lovely sketch of my author headshot (originally taken by photographer Nancy Gould).

You can read Tuttle’s article here.

Image credit: The Boston Globe.

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.

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.