The Disability Justice Project (DJP) is a strategic partnership between the Disability Rights Fund, an international NGO funding grassroots organizations of persons with disabilities (OPDs) in the Global South, and journalism educator and human rights filmmaker Jody Santos and other nationally recognized media makers from Northeastern University’s School of Journalism in Boston, Massachusetts. Based on a fellowship model, newer professionals with lived experience of disability from the Global South are paired with mentors/professional journalists in the U.S. In an exchange of ideas and experiences, the fellows learn about digital storytelling from some of the best in the industry, while the mentors learn about the global disability justice movement from frontline activists – with the goal of incorporating that new understanding into their reporting for publications like The New York Times and The Guardian or for broadcasters like PBS and ABC.
The group recently ran a feature story about me as I’m writer and journalism faculty member who has a disability (multiple sclerosis). The article entitled, “Meet DJP Mentor Meredith O’Brien,” began:
Disability Justice Project mentor Meredith O’Brien has always loved reading and writing. “As a kid, I was often reading and trying my hand at writing little stories,” she says. “I’d find notebooks around the house and just start writing stories in them.”
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!
You can purchase copies of Meredith’s books online AND support an independent bookstore to boot.
When you buy Mr. Clark’s Big Band for your teacher or music friend, when you grab a copy of a medical memoir — Uncomfortably Numb — about what happens when one’s life is involuntarily upended by illness, or you are seeking a darkly humorous novel — Mortified — about a thirtysomething mommy blogger who reveals TMI about her family and lands into hot water, you can feel good about supporting an independent publisher (Wyatt-MacKenzie), and an indie bookshop.
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.
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.
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.
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.
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.
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.
Facebook-based book groups The Write Review and Sue’s Reading Neighborhood teamed up with six other book groups to create a virtual, day-long St. Patrick’s Day “parade” of authors. Since we can’t stand on the sidewalks to watch live St. Patrick’s Day parades anywhere due to the coronavirus, this was the next best thing, plus it gave us the opportunity to speak with authors who are in Ireland right now, while we’re stateside. The Irish Echo even ran a feature story about the unusual, COVID-era event.
I appeared on a panel where the writers discussed the “Irish DNA” in our work. The night before the panel, I looked over my four books and discovered that there’s Irishness deep within the bones of each, in one way or another.
The only explicit reference to my Irish connection (via my father’s father), was found in my collection of humor/parenting columns in my book A Suburban Mom: Notes from the Asylumwhere I included a piece called, “Celebrating St. Patrick’s Day with All-American mutts.” In it, I talk about how my husband and I served our three young kids the same corned beef, cabbage and Irish soda bread my family used to eat every March 17 (full disclosure: my husband almost always made the corned beef.) While Scott took care of the corned beef, I’d have the kids create shamrock-themed crafts while I blasted U2 and the Dropkick Murphys (“Shipping Up to Boston” of course) as Scott and I enjoyed Guinness. That was usually followed by the kids’ consumption of super-sweet shamrock shaped cookies with sprinkles set atop their shamrock paper plates. One year, Scott and I took them to South Boston, where my brother lived at the time, to watch the famous Southie St. Patrick’s Day parade, not too far away from the L Street diner, which was featured in “Good Will Hunting.”
My next book, Mortified: a novel about oversharing, didn’t explicitly have Irish references, although the main characters were Irish. You had Michael Kelly who married Maggie Finn, whose mother was Molly Mahoney, whose mother Emily had lace curtains in the window. The novel was set in a suburb outside of Boston, an area where Irishness is deeply felt. When I was a newspaper reporter for a brief time, covering Boston City Hall in 1998, I was frequently asked, “What county are you from?” I’d wrinkle my brow, recall the western Massachusetts county where I was raised (Hampden), but then realized they meant from which IRISH county did my family hail (Cork).
Years later, my two works of narrative nonfiction included Irishness not only because the second one, Uncomfortably Numb: a memoir, was my story and I have Irish heritage, but because both books made frequent reference to Jamison Clark, the main character ofMr. Clark’s Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room. He not only was the hero in Mr. Clark’s Big Band, but he appeared at the beginning (and the end) of Uncomfortably Numb as he was there when I first experienced numbness in my left leg. During one of my first long interviews with him (the one with the numbness), Clark told me about and showed me his Celtic necklace with the “triple Goddess” that he wears, saying it symbolizes eternity and rebirth, this from a man who married a woman named Colleen O’Brien (no relation) and who, before they had kids, would spend the entire St. Patrick’s Day in the Black Rose in Boston.
While a recent DNA test told me I am 53 percent British and Irish (designating County Cork as a likely ancestral location), Irish influence has always been strong, particularly because of that O apostrophe at the beginning of my last name.
A ton of authors, with some connection to the Emerald Isle, will be participating in the day-long festival of all things books and Irish. (Plus there will be giveaways.) Join The Write Reviewers Book Club on Facebook in order to participate.
I’ll be speaking during the 11 a.m. panel about the Irish DNA of my characters, focusing on the protagonist in Mortified: a novel about oversharing, the stressed out Maggie Kelly.
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.
I was petrified to sit, face-to-face, with my potential future.
Fast-forward to early February 2021: I was contacted by MFA Program Director Leanna James Blackwell and asked if I could take over the already-in-progress Intro to Narrative Medicine class because Suzanne had to take a temporary leave due to an injury. (This is such a weird confluence of events, an injury preventing her from teaching narrative medicine.) Luckily, I was already familiar with the Canvas learning management system which they utilize — also used by Northeastern University where I teach journalism classes — and had already read one of the main texts.
Now as I plan to have my second evening Zoom class with a group of seven writers, I finally feel as though I’ve got a handle on the class and its rhythm, and cannot wait for the rest of the semester to unfold as we devour Writing Hard Stories by Melanie Brooks, Bodies of Truth edited by Dinty W. Moore, Erin Murphy, et al., and engage with the students’ creative nonfiction work about issues of illness and trauma.
Meanwhile, we’re sending healing vibes to Suzanne!