I cried as I read Meredith’s prognosis. I don’t think I can ever express my feelings in words. Sometimes I wonder how our lives change within a fraction of a second. A diagnosis, untimely death – it’s as if, we were happy for a second and the next thing we know, we are hit by a freight train. It is easy to say “adjust to the new normal” or “learn to live with uncertainty” but it is not as easy as it sounds. Traumatic experiences make “adjusting” difficult.
The second week of July marked the first string of days this year where I could not go outside because of my multiple sclerosis-related heat sensitivity. What makes 2020 different from the five other summers in which I’ve dealt with this particular MS symptom? There’s a pandemic going on.
I wrote a piece for the website The Mighty about the confluence of the two illnesses. Here’s how it starts:
Today was the first summer day in 2020 when stepping outside the house made me feel as though I was going to vomit. The moderate heat, combined with high humidity, enveloped me and made me instantly feel ill.
Somewhere, deep inside my brain, signals went haywire. The temperature regulation area of my brain has been damaged by my relapsing remitting multiple sclerosis (MS), meaning I can’t tolerate heat and humidity. Subjecting my body to such conditions results in nausea and/or vomiting, dizziness, blurry vision with bright lights in the corners of my eyes, and a weakening of my legs, as though my thighs have been infused with Jell-O.
The Booksmith of San Francisco, partnering with the literary journal Zyzzya, hosted a lunchtime chat between journalist and Black Widow author Leslie Streeter and myself, members of Lockdown Literature, a group of authors whose books have been published amid the pandemic.
Leslie and I talked about the challenges of writing memoir, of worrying about revealing too much information, and about how writing our books — hers about her husband suddenly dying as the couple was in the midst of adopting a child, mine about the death of my mom and the loss of my health courtesy of my MS diagnosis — discuss how we’ve dealt with involuntary changes in our lives.
We both read aloud from sections of our book as well. The section that I read from my book was on the impulsive decision to adopt a second dog — Tedy — so I could focus on something other than death and illness. Ironically, during the COVID-19 pandemic, this is exactly what many others have done in the face of their own helplessness.
You can purchase both of our books via Booksmith, which proudly sells all of the books published by the Lockdown Literature authors.
Putting it in her “Liked A Lot” category, Kolsky Hertzig wrote of the memoir:
“It tells the story of the author’s life being rocked when she is diagnosed with a chronic disease (after being told by doctors that it was anxiety/all in her head). I thought it was really interesting to learn about how her illness has affected every aspect of her life, and I also thought it was a good commentary on how women’s concerns still often aren’t taken seriously by the medical community. It’s a quick read and a I love a good memoir.”
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.
While I was gearing up to promote my memoir —Uncomfortably Numb, about the life-altering impact of my multiple sclerosis diagnosis — I realized I should probably tell my employer about both the memoir and the chronic illness.
Thus far, I haven’t had to ask for any accommodations, although I do have a handicapped parking pass to use on campus when I need it. But I thought it would be best if I told the administrator who runs my department in person. (This was well before the coronavirus caused nationwide school shut-downs.)
It prompted me to write an essay which was published by STAT News. The piece starts this way:
As I prepared to tell my employer that I have relapsing remitting multiple sclerosis, I worried about what to expect.
Maybe I’d get a shocked look from the administrator who oversees the department where I teach part-time. Or maybe I’d be quietly phased out, informed that future teaching opportunities have dried up.
This “big reveal” would be, according to multiple sclerosis advocates, a risky move.
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?
As Dyer — author of several novels including the Untamed series — is working on her own memoir about her chronic illness, her words meant a great deal to me.
While saying she “couldn’t read it fast enough,” Dyer called Uncomfortably Numb “harrowing in places,” adding that it had “so many relatable moments.”
“The writing craft itself in this book is really good too,” Dyer continued. “Stylistically, Meredith’s writing flows and just demands to be read. I’ve read quite a few medical memoirs, but I have to say, I think this is one of the best, and I’ll be recommending it for years to come.”
You wouldn’t know, just by reading this post, but I’m blushing. Thank you Madeline!