I consume news in the form of two daily, hard copy newspapers (I know, I’m ancient), the Boston Globe and the New York Times. I also read online subscriptions of the Washington Post and the Wall Street Journal, as well as devour magazines, the New Yorker and New York Magazine (yes, in hard copy), and the online version of The Atlantic.
When I’m not busy reading all of that journalistic and literary goodness (I just added the literary magazine Creative Nonfiction to my subscription list), I’m reading books. Funny books. Serious books. Fiction. Nonfiction. New England-centric. Politically-oriented. My tastes run wide.
Halfway through the year I published a list on Instagram of the books I’d read starting in January 2021 through early June 2021:
Then, as 2021 drew to an ignominious close with lines for COVID-19 tests wrapping city blocks, I shared the second half of my 2021 reading list:
What did YOU read in 2021? Give the authors a shout-out. They’d appreciate some social media love.
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.
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.