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.

new post on the mighty: how covid-19 & ms make for a high-stakes summer

A woman with a hat in the sun

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.

To read the rest of the piece click here.

Image credit: The Mighty.

essay: adventures with a dairy allergy

dairyIt was a serendipitous coincidence that my latest column for The Mighty website, “Got Milk? Adventures with a Dairy Allergy” was published as many were celebrating National Cheese Day an event in which I, sadly, did not partake.

The piece involves Thanksgiving dinner at my sister-in-law’s house, a jar of gravy, and a couple of doses of Benadryl. It starts this way:

My legs seemed to dissolve beneath me. My eyelids grew heavy as I plunged into sleep like I was falling off a cliff. Actually, it’s more accurate to describe what happened this way: I passed out in my sister-in-law’s guest bedroom, as if I’d been drugged. Blame it on the dry milk.

Read the whole essay here.

Image credit: The Mighty website via Getty Image/Baibaz.

essay: ms keeps some patients under summertime house arrest

the-mighty-300x300The website The Mighty has published a piece of mine about the brutal impact of summertime heat and humidity on multiple sclerosis patients.

“I am locked in a personal war with heat and humidity,” I wrote in the piece, my first at The Mighty where I am now a contributing writer. “To me, they are more than mere summertime annoyances, inconveniences that cause one’s hair to frizz, make-up to melt off one’s face in a colorful oil slick, and perspiration to soak one’s clothing with unsightly blotches. To me, heat and humidity are my jailers.”

Read the whole essay here.

Image credit: The Mighty website.