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.
Leslie is a columnist for the Palm Beach Post and the author of Black Widow: A Sad-Funny Journey Through Grief for People Who Normally Avoid Books With Words Like ‘Journey’ In The Title. She lives in West Palm Beach with her mother Tina and her son Brooks.
You can watch the live-stream of this Facebook event — or watch it later, but then you won’t be able to ask us questions live — here.
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!
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 Republican — the daily newspaper for which I used to work way back in the day, back when it was called The Union-News –ran a feature story about my medical memoir, Uncomfortably Numb, and my experiences with MS.
Fatigue hit her hard while she was watching her son at a Christmas musical event at the high school in Southborough where she now lives. “Quite quickly, my thinking became foggy and my legs were on the verge of giving out,” O’Brien recalls. “I had to ask my husband to drive me home immediately. I spent the next several days in bed, unable to do what I wanted because my body needed the rest.”