Tag: chronic illness

new essay: ‘poison in a coffee cup’ in pangyrus lit mag

The Boston-area literary magazine Pangyrus recently published a braided essay I wrote about the impact of being severely allergic to food containing dairy products. The incident around which the piece is constructed was my accidental March 2023 ingestion of some kind of dairy product in spite of ordering an oat milk latte and a vegan burrito (presumably dairy-free) at an upscale Seattle coffee shop. My rapid consumption led to a trip to the ER.

Ironically, later that afternoon, I had been slated to attend a session at the writers’ conference about writing about one’s disabilities. I was most looking forward to meeting writer Sandra Beasley, someone whose work has delved into her life-altering and life-threatening food allergies. Sadly, I was sitting in an ER bay with epinephrine and steroids flowing through my veins when Sandra started speaking on her panel. I had to later watch her session online from the safety of my Boston area home.

Here’s how the Pangyrus essay begins:

A black bulldog, strapped into a red harness, peers over its person’s shoulder and stares at me. We’re in a line at a small, indie coffee shop, where I’m jonesing for some of that famous Seattle coffee. The bulky canine in front of me, indifferently sniffing the air once I become a boring subject to observe, is likely hoping for a morsel of some of the baked goods the scents of which are subtly threaded through the heavy coffee aroma. 

A New Englander, I’m a regular at my local Dunkin’ Donuts, although I occasionally go to Starbucks to splurge for an oat milk latte. Most mornings, I use my Keurig machine to brew two cups of coffee, hoping that the caffeine will force my brain to focus, like when you need to reboot a laptop. Control. Alt. Delete. 

This coffee shop near Lake Union, not far from one of the several Google office buildings in the city, is brimming with Millennials and Gen Zers, many in running gear and coated with a thin sheen of perspiration. The room is loud as benign chatter bounces off the spartan walls. I feel the sound in my chest. Scott and I — early Gen Xers — definitely feel our age.

To read the rest of the essay in which I experience anaphylactic shock — see the pics above of me in the ER AFTER I’d been injected with medications, when the swelling around my eyes had lessened and I was able to breath easier — click here.

Image credit: Pangyrus.

audiobook for ms memoir on sale through may 31

Audiobooks.com is putting my MS memoir, Uncomfortably Numb, on sale for the month of May.

Narrated by Erin deWard, the audiobook traces the two years it took me to finally get diagnosed with multiple sclerosis (after being told my symptoms were psychosomatic), and then the three years it took me to reach an uneasy peace with the ways in which the incurable, neurological disease changed my life.

If you click on this link, you can listen to a sample of deWard reading my words aloud (something that still feels surreal, someone else giving voice to my experiences).

Image credit: Audiobook.com.

uncomfortably numb’s now an audiobook: get 50% off!

Uncomfortably Numb — my medical memoir about the life-altering impact of a multiple sclerosis diagnosis — has been transformed into an audiobook.

I can’t tell you how odd it is to have this intensely personal story about my health and ultimate MS diagnosis, which occurred months after my 65-year-old mother died from a fast-moving cancer, read aloud by somebody else.

When I was first approached about having the memoir professionally narrated, I was excited but also concerned. How could anyone possibly use the emphasis I intended, the specific tone of voice that was in my head when I wrote those words, I wondered.

Well, in the trusted hands of narrator Erin deWard, I fret no longer.

While the audiobook is available on Amazon, it is also on sale for half price at Audiobooks.com until the end of January.

I’m thrilled to have Uncomfortably Numb now available to those who prefer audible formats. Let me know what you think!

Image credit: Audiobooks.com.

meredith’s speech at upstate new york’s women against ms luncheon

I was thrilled to have been asked to serve as the keynote speaker late last year at the upstate New York chapter of the National Multiple Sclerosis Society’s Women Against MS Luncheon.

While I was disappointed that I couldn’t meet folks in person — thanks COVID — I recorded my brief speech for the virtual fundraising luncheon and spoke on the theme of making peace with wherever you are in your life at this very moment, whether you have MS or some other unpredictable obstacle with which you must contend.

(My speech starts in the 37th minute of the video above.)

‘another game day’ essay in narrative medicine lit mag

I was honored to have my essay, “Another Game Day,” published by Intima: A Journal of Narrative Medicine.

The essay — structured around my disappointment about having to miss yet another Boston Red Sox game due to multiple sclerosis — is an exploration of how, since being diagnosed with MS in 2014, I’ve been on a long learning curve adjusting to my new normal, adjusting to an unpredictable life with chronic illness.

The essay begins this way:

It was game day.

I had tickets to see my beloved Red Sox play at historic Fenway Park. They were in the hunt for a Wild Card playoff spot.

But I couldn’t attend the game.

Again.

Why? Because it was going to be hot and humid. Because the weather conditions – not the spate of uneven Red Sox performances – would make me ill. Because multiple sclerosis has caused damage to the area of my brain that controls my temperature and, when I’m in hot and humid conditions, that damage causes me to, essentially, short-circuit.

Marleen Pasch

Over on Intima’s blog, Crossroads, writer Marleen Pasch, compared themes in “Another Game Day” with a newly-published essay of her own, “Rocks and River.”

Pasch (on right) said, “O’Brien understands the need to assess risk then listen to and heed the more protective voice of wisdom.”

Read Pasch’s Intima essay here.

when multiple sclerosis messes with your ability to taste food

A few years into my life with multiple sclerosis, I started noticing that food and beverages tasted … off.

Coffee was bitter. Wine was acidic. Sweet food was bland. And, worst of all, I couldn’t taste salt very well.

The folks at the National Multiple Sclerosis Society’s Momentum Magazine interviewed me for a story about taste dysfunction called, “Does this taste weird to you?”

The article starts by featuring yours truly:

As a salt-lover, Meredith O’Brien used to eat Ritz crackers upside down to savor the salt crystals dissolving on her tongue. But one day, two years into her diagnosis of multiple sclerosis, those same crackers tasted like plain paste. The next morning, her coffee tasted burnt. Red wine at dinner tasted sour. When O’Brien, who is based in the Boston area, brought up the issue to her neurologist, he said he’d never heard of such a thing.

“Taste alterations are a primary MS symptom that has flown largely under the radar,” confirms Mona Bostick, a dietitian-nutritionist in Greensboro, North Carolina, who also lives with MS. A 2016 study in the Journal of Neurology suggested that 15% to 32% of people with MS may experience taste deficits. A 2019 study in the Journal of Community Dentistry and Oral Epidemiology puts that number closer to 40%. The latter study also found that 68.4% of survey respondents complained of dry mouth, which further dampens flavor, as saliva helps taste buds do their job.

Read the rest of the article — which also quotes fellow MS patient and author Trevis Gleason, a chef who shares his “umami bomb” tips — here.

pittsburgh’s women on the move luncheon

Since the COVID pandemic essentially shut down the world in early 2020, I haven’t really had the opportunity to speak in front of actual, live people about my medical memoir, Uncomfortably Numb, or about the fact that I have multiple sclerosis. Other than one event to launch the book in March 2020, all my other events have been virtual, and, given the circumstances, that’s entirely reasonable.

Then the Pennsylvania Keystone Chapter of the National Multiple Sclerosis Society invited me to speak at their annual Woman on the Move luncheon for Sept. 29, 2021. The event would occur after we’d had our COVID vaccines. The event would be outdoors. And when not sitting at the tables or speaking at the podium, most folks would wear face masks.

Now that the event has concluded (and I can breathe again … I was low-key terrified about speaking to tell you the truth), I’m experiencing a rush of joy at having been able to not just share my MS experience with others, but about seeing and speaking with fellow MS patients. It’s like a fellowship of sorts, a collection of people who just get it, who understand the unpredictable and chronic nature of the disease, who understand heat sensistivity and what it’s like when you hit a wall of fatigue.

For instance, I spoke with a Pennsylvania man who, despite having MS, has run four marathons, including the Boston Marathon. After my speech — in which I mentioned I have MS-induced heat sensitivity — he wanted to show me photos of how he was able to regulate his temperature while running the marathon (sleeves and a baseball hat filled with ice that would be replenished at different stops along the marathon route).

Several people shared that they, like me, were initially disbelieved or dismissed when they sought medical help for what they feared was multiple sclerosis.

Two nurses who work with MS patients were bursting with pride about their vocation, while someone who does physical therapy with MS patients slipped me her business card and told me she’d be reaching out to me with some advice.

I even got to speak with CBS affiliate KDKA-2 News Anchor Ken Rice — the event emcee — about journalism and baseball, two of my favorite subjects.

Everything from the orange gift bags on the tables — which included candy Boston baked beans (because I’m from the Boston area) and little notebooks (because I’m a writer) — to the authentic warmth everyone exuded, it became shockingly clear to me why so many of us have deeply and vicerally missed being in one another’s presence and why having to understandably be relegated to the safety our COVID bubbles has been painful.

Don’t get me wrong, I’m not running around and partying maskless. I wear my mask outside, indoors (except when eating), and in the classrooms where I teach. (I’m one of the few folks who even wear them to baseball games.) I’ll get a booster shot as soon as I am able. But being with people today at this Women on the Move luncheon made me realize, man, have I missed people!

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.

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.