I 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.
In 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.
I’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.
Chronic 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.
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.
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:
Image credits: Wyatt-MacKenzie Publishing and Publishers Marketplace.
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.