Tag: health writing

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.

spoonie author network podcast talks ‘uncomfortably numb’

Dianna Gunn recently interviewed me for her podcast, called the Spoonie Authors Podcast, a group which spotlights writers with disabilities.

For those who are unfamiliar with the phrase “spoonie,” the podcast offers this definition:

A Spoonie is a person who suffers from a chronic illness, condition, or disability that regularly drains them of their energy and/or causes acute pain, resulting in impaired function of ordinary activities. The nickname came from an article called The Spoon Theory by Christine Miserandino, which you can read on butyoudontlooksick.com. In my opinion, it’s still the best way to describe to non-Spoonies what life for us really feels like.

In The Spoon Theory, spoons are used as symbols for every-day activities, such as showering, making lunch, collecting the mail, and so on. Many of us don’t have enough ‘spoons’ to handle the simplest of routines.

5 things i wish people knew about ms — healthline

Screenshot 2020-06-12 13.03.13I recently wrote a post for the website Healthline about the things I wish were common knowledge about multiple sclerosis.

Here’s an excerpt:

In late July 2014, my life felt like it imploded after I was diagnosed with relapsing-remitting multiple sclerosis.

Since then, I’ve had to not only adjust the way I move through the world, but have found myself educating others about what this incurable autoimmune disease is actually like.

It would make life a whole lot easier if a few things about multiple sclerosis (MS) became common knowledge. To that end, here’s what I wish everyone understood about MS.

Read the whole piece here.

Image credit: Healthline.

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.

publishing news: memoir coming in spring 2020

August 2019 book promo

The memoir on which I’ve been working for several years, Uncomfortably Numb, is being published by Wyatt-MacKenzie Publishing in the spring of 2020.

While chronicling the onset of symptoms that ultimately led to a diagnosis of multiple sclerosis, Uncomfortably Numb tells the story of not only finding an uneasy peace with the permanent uncertainty of living with a chronic illness, but also of coping with the premature death of one’s mother and the ensuing collateral emotional damage.

Here’s the Publishers Marketplace announcement of the deal:

August 2019 Publish announcement

Image credits: Wyatt-MacKenzie Publishing and Publishers Marketplace.

 

what’s it like to have an mri when you’re claustrophobic?

My new piece at the National Multiple Sclerosis Society’s MS Connection blog tackles the topic of what it’s like for a someone (that would be me) to have an MRI when you’re claustrophobic, particularly when your head has to be enclosed by this lovely little thing called a “face cage.”

An excerpt of the piece:

“… [A] technician beckons me into the large room where the behemoth machine resides.

This is when the fun starts. And when I say ‘fun,’ I mean the opposite of fun. I really mean ‘terror.’ I mean a trapped-inside-something-and-can’t-get-out terror. It’s at this point when, after placing my head between two hard pieces of plastic, the technician clicks a hard plastic cage over my face and into those twin pillars. There is a relatively narrow rectangular opening above my face, but there’s no avoiding the fact that I am confined. The face cage is about two inches away from the tip of my nose. Its mere presence makes me feel like I can’t breathe. Like I’m being punished. Locked up.

Did I mention that I’m claustrophobic?”

Read the full post here.