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 in which I chronicle the diagnosis of multiple sclerosis, the death of my mother from a fast-moving cancer, and the changes that accompany those two things is now available for pre-order.
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.
A new post I’ve written for the National Multiple Sclerosis Society’s blog, MS Connection, explores the issue of how open someone should be when they have an invisible illness.
Do you tell everybody about your illness, immediately? Do you incrementally parcel out the info about what’s happening to you on an as-needed basis? Or do you only tell people when your symptoms force you to become public?
These are questions with which I still wrestle.
Do I walk over and explain to the dude in the garage—the one who’s been giving me the stink eye ever since I pulled into a disabled parking spot—that, while I appear to be healthy, I actually have MS?
Do I tell my students what’s going on when I’m pressing my icy drink against my neck to cool me off while I’m teaching inside an overheated classroom, fretting about whether my MS heat sensitivity will flare up?
I face these situations quite frequently, wondering whether I should explain my MS to people so they will understand my actions and reactions, or if I should just keep quiet.
Four years into my MS odyssey, I haven’t yet found the sweet spot.
Read the rest of the post here.
Image credit from MS Connection.
The National Multiple Sclerosis Society published my recent post, “A Loss of Taste,” about my vanishing ability to taste foods, as comfort food that I once enjoyed now give me nothing but disappointment.
Here’s an excerpt:
Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.
What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found.
Over the past two years, my ability to taste these favorites has gradually diminished. More recently, it significantly ebbed to the point where several food and drink items no longer taste familiar. The caramel-flavored coffee I bought the other week? It was outright disgusting in my mouth.
Is MS the culprit? My taste thief?
Read the rest of the piece here.
Image credit: National Multiple Sclerosis Society.
Way back in the late 1990s, when my husband and I were in fertility treatments, it seemed as though pregnant women were everywhere. In stores. On city streets. On TV and in movies. In my friend groups. At family gatherings.
When I was so craving a child — and failing to conceive one — seeing so many gestating women felt like grains of salt in an open wound. I distinctly remember trying to escape all things maternal on Mother’s Day 1997 when the angst of my infertility felt especially potent. I opted to watch NBA games. Certainly I could seek refuge from babies and all things maternal there. Wrong. Pre-recorded segments of athletes thanking their moms for all their support over the years were featured during breaks. Until I eventually became pregnant with twins, reminders of my infertility seemed painfully omnipresent.
I was reminded of those days after I was diagnosed with multiple sclerosis in 2014 and suddenly started paying close attention to every reference to the disease, whereas in the past, they’d whisk past me like the wind. The MS references I saw in pop culture in those early months after my diagnosis, were almost always dire and sent urgent pangs of fear about my future through my heart.
The National MS Society recently published my piece, “Fever Fatale” about this subject on its MS Connection. Here’s an excerpt:
“A fever could be life threatening.”
That single line from an old episode of “The West Wing” prompted me to immediately Google whether, in fact, a fever is fatal to someone with relapsing remitting multiple sclerosis, something with which I was diagnosed in the summer of 2014. Fresh from learning I had MS, this mere suggestion plunged me into a panic. A search of “fever and multiple sclerosis” yielded over 590,000 results.
Read the rest of the piece here.
Image credit: MS Connection.
The website The Mighty has published a piece of mine about the brutal impact of summertime heat and humidity on multiple sclerosis patients.
“I am locked in a personal war with heat and humidity,” I wrote in the piece, my first at The Mighty where I am now a contributing writer. “To me, they are more than mere summertime annoyances, inconveniences that cause one’s hair to frizz, make-up to melt off one’s face in a colorful oil slick, and perspiration to soak one’s clothing with unsightly blotches. To me, heat and humidity are my jailers.”
Read the whole essay here.
Image credit: The Mighty website.