take the #hotdisabilityaidsummer challenge

Blogger and Instagrammer Jessica Gregory participating in the Instagram #hotdisabilityaidsummer challenge.

Many folks with chronic illnesses regularly use “disability aids” to help them move through the world and do the things they need to do on a daily basis.

Some need mobility aids like crutches, scooters, or wheelchairs. Others need permanent ports in their chests to make the administration of regular doses of medication easier. Yet others need braces, cooling vests, or supportive tools.

The problem is, these items are oftentimes stigmatized. Rather, the people using these items are stigmatized, pitied, looked upon with raised eyebrows. This makes some — including yours truly — reticient to use these aids or reveal them in public.

Author Elissa Dickey posing with the fan she needs to cope with MS-related heat sensitivity.

I was thinking about this subject during a recent conversation with fellow writers as we were discussing our disability aids. I mentioned how I was worried about being able to sit through an upcoming evening game at Fenway Park in Boston to see my beloved Red Sox play. Multiple sclerosis has damaged a part of my brain that regulates my temperature, so that when I’m in a place where it’s hot and/or highly humid, I immediately start to feel ill. Symptoms can include vomiting, stars in my peripheral vision, leg weakness, and dizziness. I can begin to feel “normal” again once I cool off. (This is the reason why, after I take a shower, I need time to cool off before getting dressed, otherwise I’ll become sick.)

When I saw the forecast for this Sox game — temps in the 80s — I was concerned. In order to make it through the game, I’d need to rely on a host of disability aids like a specialized (and very unfashionable) velcro-enclosure cooling vest, cooling cloths, and pressing a series of ice packs onto my neck and in my hands.

A writer who lives with life-threatening allergies — Sandra Beasley, who wrote, Don’t Kill the Birthday Girl: Tales from an Allergic Life– said she has to tote an Epi-Pen with her everywhere she goes in the event she accidentally ingests something that could kill her. Beasley said she has had to explain to venue personnel at events she’s attending what it is and why she needs it. She encouraged me not only to attend the game, and to openly and unabashedly use my disability aids, but also suggested I create an Instagram challenge where I post a picture of myself wearing that hideously ugly cooling vest, a way to destigmatize it. I was too shy to use some of the hashtags she suggested, like #hotgirldisabilitysummer, so I came up with the more anodyne hashtag: #hotdisabilityaidsummer.

Writer Jennifer Steil, participating in the #hotdisabilityaidsummer challenge, in her neck brace that allows her to work at her computer without excruciating pain.

A post I’ve written for The Mighty, promoting the #hotdisabilityaidsummer challenge, has been published, and others have been joining in on Instagram.

The first image on this post was shared by Jessica Gregory, who goes by the nickname “Delicate Little Petal” on Instagram. In her #hotdisabilityaidsummer post about her crutches, Jessica wrote, “I’m freshly vaccinated and looking forward to my first sexy summer on four legs!”

Author Elissa Dickey (second image), a fellow MS patient who suffers from heat sensitivity, shared a pic of her face next to a fan.

Writer Jennifer Steil (third image) posted a photo of herself wearing the neck brace she needs to don when she’s writing because she said, “My neck is held together with titanium. I have occipital nerve damage and cervicogenic chronic nerve pain.”

Collectively, I’m hoping that #hotdisabilityaidsummer will at least encourage those with chronic illnesses to be less embarassed by their disability aids. I know that I have been less afraid to don my cooling vest as a result of the challenge.

Here’s the link to my original Instagram post.

Image credits: Jessica Gregory, Elissa Dickey, and Jennifer Steil.

how to get through a brain mri when you’re claustrophobic

Young woman lying and relaxing on bench in Barcelona beach, Catalonia, Spain.

One of the many aspects of having multiple sclerosis that rattle me is the fact that I have to endure regular MRIs of my brain and spine to determine if MS has caused new damage and whether my current disease modifying medication is still working.

For some folks, this isn’t a big deal. They lie down on the scanning bed, allow themselves to be tucked in with a soft blanket, listen to music through special ear buds, and are perfectly content inside that narrow MRI machine tube for anywhere from a half-hour to an hour-and-a-half (depending on what’s being scanned).

I am not one of those people.

If you are claustrophic like I am, these scans can be a nightmare.

I spoke with a writer from the National Multiple Sclerosis Society’s Momentum Magazine about how I’ve learned to cope with my MRIs without having a panic attack. This doesn’t mean I like these scans any more than I ever did, or that I no longer experience the strong desire to flee once I’ve been delivered inside that machine. I’ve just figured out what I need to do in order to get through it.

Here’s how the story begins:

Meredith O’Brien won’t soon forget the magnetic resonance imaging (MRI) scan she had in 2014. “I didn’t know my head would be locked down in a hard plastic ‘face cage,’” she says. When she told the technician she was claustrophobic, he directed her to a mirror she could use to see around the room. “I know he was trying to be kind, but I had a panic attack,” says O’Brien, 51, a Boston-based writer with relapsing-remitting multiple sclerosis (RRMS). She ended up removing the blankets given to her and getting out of the machine to calm down before trying again.

Here’s a link to the whole story: https://momentummagazineonline.com/7-tips-for-getting-through-an-mri-if-you-have-ms/

Image credit: Momentum Magazine.

talking women & health with authors & poets

Author Christina Chiu — who wrote the powerful Beauty (do yourself a favor and read it!) — invited three writers to tackle the topic of women & health, while she also shared candid stories of her own illness, as well as her son’s experiences with food allergies.

Among her guests:

Sandra Beasley, the author of the memoir, Don’t Kill the Birthday Girl: Tales from an Allergic Life, and more recently, Made to Explode: Poems, spoke about her food allergies and how she has embraced her disability as a part of her identity.

Poet Julie E. Bloemeke — whose collection of poems, Slide to Unlock, “investigates how modern technology redirects our erotic and familial lives” — discussed not only how she dealt with depression, but how it and various therapies for it influenced her writing.

I, meanwhile, read aloud a section of my multiple sclerosis-centric memoir Uncomfortably Numb where the neurologist who first examined me — after an MRI showed a lesion on my brainstem — suggested that my symptoms of numbness were likely “psychosomatic.”

I hope the discussion helps give people with illnesses and/or disabilities some sense that they are not alone.

why did i wait so long to join a support group?

My latest post for the National Multiple Sclerosis Society’s publication, Momentum Magazine, describes my initial reluctance — fueled by fear — to join an MS support group. But after attending several online support groups to promote my medical memoir, Uncomfortably Numb, I realized I was missing out.

Here’s how the piece begins:

I was diagnosed with relapsing-remitting multiple sclerosis in July 2014. Upon receiving my diagnosis, I reached out to the National MS Society for information. Included in the materials I received were contact details for MS support groups in my area. But despite the fact that I was perfectly able to attend a support group, I resisted.

Why?

I was petrified to sit, face-to-face, with my potential future.

Read the whole piece here.

podcasts, youtube series feature ‘uncomfortably numb’

I rang out the wretched 2020 and rang in 2021 with interviews about Uncomfortably Numb: a memoir with podcasters and the host of a YouTube series.

We talked about adjusting one’s life to an unexpected turn of events (like having the world shut down because of COVID, as well as, obviously, getting diagnosed with multiple sclerosis), the impulsive decisions we can make when we’re under stress (like “panic adopting” a puppy just months after getting diagnosed with MS, as many folks have done amid coronavirus shut-downs), and the impact of about writing about very personal topics.

Spoonie Author Podcast

Dianna Gunn, of the Spoonie Author Network — a network “devoted to sharing the stories of disabled, d/Deaf, neurodiverse authors (and/or authors who manage mental illness and/or chronic conditions) and educating abled people about what life is like for us as ‘Spoonie’ creatives” — conducted an interview with me where we discussed how a multiple sclerosis diagnosis upended my life and forced a stubborn me to pace myself when it came to my day’s activities (something with which I’ve had mixed results).

The Situation and the Story Podcast

Weeks later, Chris Moore, of The Situation and the Story Podcast — which interviews authors about “the ways our various identities and intersectionalities inform our stories and make us who we are” — chatted with me about writing this intensely intimate memoir which covers rough emotional terrain, from my own illness and questions about who I’d be as a writer if some of my symptoms worsened, to the death of my mother with whom I had a challenging relationship.

Dr. Brandon Beaber’s YouTube Multiple Sclerosis Channel

Then I heard from a California-based neurologist who specializes in multiple sclerosis, Dr. Brandon Beaber, who asked if I’d speak with him about Uncomfortably Numb and my experiences as an MS patient.

Dr. Beaber, the author of Resilience in the Face of Multiple Sclerosis, has a YouTube channel packed with informational videos about all things multiple sclerosis.

Thank you, thank you, thank you to Dianna Gunn, to Chris Moore and to Dr. Brandon Beaber for the time you spent discussing Uncomfortably Numb.

got readers on your holiday list? give ’em signed books from an indie bookstore

Tatnuck Booksellers in Westborough, MA has signed copies of three of my books (a memoir, a novel and a work of nonfiction) for sale, just in time for the readers on your holiday lists. Given that COVID has severely affected small businesses like independent bookstores, I’m sure they’d appreciate your support.

Signed books include:

Uncomfortably Numb: a memoir about the life-altering diagnosis of multiple sclerosis Kindle Edition

Uncomfortably Numb: a memoir. My medical memoir about the life-altering impact of a multiple sclerosis diagnosis. It chronicles the two years it took to get an MS diagnosis and confirmation that the symptoms I was experiencing weren’t simply in my imagination (as one physician suggested), as well as the uneasy piece I reached an uneasy peace with my post-MS life.

Mr. Clark's Big Band: A Year of Laughter, Tears, and Jazz in a Middle School Band Room Kindle Edition

Mr. Clark’s Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room. A book about the 2012-2013 school year I shadowed the Southborough, MA middle school jazz band as they were recovering from mourning the sudden death of one of their own, a 12-year-old trumpet player named Eric Green. This award-winning book would be great for any educators on your list.

Mortified: a book about oversharing by [Meredith O'Brien]

Mortified: a novel about oversharing. Set in 2004 at the height of mommy blogging, this darkly humorous work of contemporary fiction follows a thirtysomething mom of two who started venting about her frustration with modern parenting through her blog. When her family discovers the unkind things she’s been writing about them online, well, all hell breaks loose.

spoonie author network podcast talks ‘uncomfortably numb’

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.

invite me & my fellow ‘authors in pajamas’ to your book groups

With the advent of Zoom-based book groups during this horrendous pandemic, authors have gotten creative.

One way is to offer book clubs the opportunity for us to appear on a Zoom chat wearing funky pajamas.

This fall I joined the group Authors in Pajamas, a group of writers who you can invite to your virtual book clubs. If you schedule a visit, you’ll get a lively chat featuring a writer in cozy PJs!

A list of the authors — as well as links to get our books — is available here.

good book fairy calls uncomfortably numb ‘a wonderful, absorbing memoir’ with ‘heart and insight’

Book blogger, the Good Book Fairy, featured Uncomfortably Numb on her site, giving it four stars.

Her review:

“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.”

a lifely read: ‘uncomfortably numb’ examines how one responds to personal crises

Amy Wilson Sheldon — a writer and editor whose Instagram account, “A Lifely Read” discusses and features books and authors — recently reviewed Uncomfortably Numb.

Her review:

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.