Dianna Gunn recently interviewed me for her podcast, called the Spoonie Authors Podcast, a group which spotlights writers with disabilities.
For those who are unfamiliar with the phrase “spoonie,” the podcast offers this definition:
A Spoonie is a person who suffers from a chronic illness, condition, or disability that regularly drains them of their energy and/or causes acute pain, resulting in impaired function of ordinary activities. The nickname came from an article called The Spoon Theory by Christine Miserandino, which you can read on butyoudontlooksick.com. In my opinion, it’s still the best way to describe to non-Spoonies what life for us really feels like.
In The Spoon Theory, spoons are used as symbols for every-day activities, such as showering, making lunch, collecting the mail, and so on. Many of us don’t have enough ‘spoons’ to handle the simplest of routines.
“Uncomfortably Numb is a wonderful, absorbing memoir where the author chronicles her transformation after being diagnosed with multiple sclerosis. O’Brien, who is an author/journalist by trade, writes about her life pre- and post-diagnosis, and provides an honest account of how her diagnosis impacted her life and family. The author shares the long diagnostic process where many doctors did not take her seriously.
O’Brien writes with openness of heart and insight. I found her to be honest, relatable, and authentic. I admired her strength, courage, and perseverance as she finally accepts her diagnosis and learns to adapt to her ‘new normal,’ and hold onto her identify as a writer, she states that her ‘reluctance to move forward into uncertainty is rooting me in place, paralyzing me.’
Throughout the book, O’Brien showcases her talents as an investigative journalist by weaving in medical reports, physicians’ notes, and lots of valuable information about MS. She also spends a lot of time talking about her wonderfully supportive family.
… Prospective readers should know that this book is about much more than MS. There are universal themes throughout, and the lesson that readers can take away and apply to their own lives.”
Amy Wilson Sheldon — a writer and editor whose Instagram account, “A Lifely Read” discusses and features books and authors — recently reviewedUncomfortably Numb.
This is a different kind of memoir, and it should be noted that MS is a chronic disease and that you can’t ‘conquer’ it and watch it disappear. O’Brien has a reporting background and teaches journalism at Northeastern, so her book definitely reads as reportage. That’s important because her work lays bare the acute nuts and bolts of living with MS. (There are a couple of scenes that are particularly tough.) That being said, other things happen in one’s life that help shape how we’ll respond to crisis. In the author’s case, it includes her relationship with her mother (and coping with her death), infertility struggles, a reckoning with her career. (“While I cling to my identity as a writer like a drowning woman to a life raft, I haven’t accepted that I’m also the writer who takes two pricey pills a day with a tablespoon of peanut butter in the morning and evening.”)
How does one’s diagnosis, one’s obstacles shape a life? It’s more than not letting it “dominate” you.
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.