Christina Chiu — working with the New York Writers Workshop and 2040Books — organized a virtual author event where she invited three writers to discuss our recent books which all touch on the subjects of “Hope, Healing and Loss.” Chiu’s recent novel is Beauty.
I was thrilled to discuss my medical MS memoir, Uncomfortably Numb, alongside memoirist Maya Lang who wrote What We Carry about her mother’s Alzheimer’s, and novelist Jacqueline Friedman whose That’s Not a Thing features a character who develops ALS.
The hour-long discussion was lively and varied, as we touched on topics from approaches to writing and research, to how the medical industry treats female patients differently than male ones.
I had to fend off Tedy, who kept trying to climb up on my chair and eventually succeeded. Then there was Max, who was snorting and moaning loudly on the floor. My husband decided it was the perfect time to make dinner so there were ambient cooking noises as well. Ah … the joys of the coronavirus quanantine and working from home!
You can watch the video of our discussion here.
In the first scene in my recently-released medical memoir, Uncomfortably Numb, I am interviewing Jamie Clark, the music director of the middle school jazz band I’m planning to shadow during the 2012-2013 school year to witness how Clark helps his students through mourning the sudden death of a band member. The year I spend with Clark and his student musicians is the subject of my 2017 book, Mr. Clark’s Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room.
As I’m speaking with Clark, I experience what I will later realize is the first symptom of multiple sclerosis. It will take two years before I’m officially diagnosed with the incurable autoimmune disease, and another three to see the band book through to publication.
The time line covered in my 2020 memoir Uncomfortably Numb starts with that August 2012 interview and ends with the launch of Mr. Clark’s Big Band. Pretty meta.
The inextricable link between the two books is detailed in a piece published on the website Women Writers, Women[‘s] Books. The website is also featuring my book this month as a recommended read.
Image credit: Women Writers, Women[‘s] Books.
Come on over to Twitter on Tuesday, April 7 at 3 p.m. Boston time and join a panel of authors discussing “Perceptions of Femininity.”
Six authors — including yours truly — will be discussing femininity, sexuality and power. Participants include: Christina Chiu, Rachel McLean, Christina Russo, Emma Miles and Rachel Churcher. The moderator is Mai Taylor.
My contribution to the talk? How women’s medical complaints are handled and received by some physicians.
Follow @BookPartyChat and the hashtag #BookPartyChat.
UK Author Madeline Dyer and her Book Party Chat Twitter page hosted me for an hour-long discussion about writing, about memoir, about researching, and about work that inspired me as I wrote Uncomfortably Numb.
We discussed how long it took to write the memoir, what it was like to write such raw and personal material, as well as what projects I’m working on next … to which I would only say that it’s something in the thriller/fiction genre and will be set in Springfield, MA where I used to work as a newspaper reporter. It’s still in its infancy/planning stages.
Thank you Madeline and the Book Party Chat team for taking the time to speak with me about my work and about the craft of writing.
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.
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.
It was a serendipitous coincidence that my latest column for The Mighty website, “Got Milk? Adventures with a Dairy Allergy” was published as many were celebrating National Cheese Day an event in which I, sadly, did not partake.
The piece involves Thanksgiving dinner at my sister-in-law’s house, a jar of gravy, and a couple of doses of Benadryl. It starts this way:
My legs seemed to dissolve beneath me. My eyelids grew heavy as I plunged into sleep like I was falling off a cliff. Actually, it’s more accurate to describe what happened this way: I passed out in my sister-in-law’s guest bedroom, as if I’d been drugged. Blame it on the dry milk.
Read the whole essay here.
Image credit: The Mighty website via Getty Image/Baibaz.
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.
It was in Monson, Mass. where I autographed my first arm.
And my first sneaker.
And a slightly sweaty palm.
Students from the Granite Valley Middle School — where I spoke in March about Mr. Clark’s Big Band — were full of questions, energy, and requests for me to use my green Sharpie to sign … their various limbs and footwear. (They SWORE their parents would be totally okay with this. For the record, I remain skeptical.)
Before I spoke in the auditorium, I visited the Granite Valley band room where students assured me that their Mr. Clark — who goes by the name of Mr. Topham in Monson — is just as lively and off-center as the lead character in my book.
Later, I shared stories about how and why I came to write Mr. Clark’s Big Band about a middle school jazz band about an hour’s drive to the east, told them tales about Southborough’s Mr. Clark, and read passages aloud while a PowerPoint presentation behind me showed various images of Mr. Clark (including one of him in a goofy pink wig during a performance), and of the Trottier Middle School band room.
The image that got the loudest response? The one of chicken-in-a-can that was on screen as I read a segment from the chapter called, cleverly enough, “Chicken-in-a-Can.” At least the presentation was AFTER lunch so it didn’t spoil anyone’s meal.
I also got the opportunity to catch up with my friend from West Springfield (MA) High School, Granite Valley’s Principal Mary Cieplik (above, on the right), who generously invited me to address her students.
If you’d like me to visit your students, or your book club, send me an email: email@example.com.
Images from Granite Valley Middle School’s “In the Loop” newsletter.