How COVID-19 and MS Make for a High-Stakes Summer

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.

For much of the year, when it’s neither hot nor humid, I can pretend that I’m not heat sensitive. However when buildings are overheated in the winter, when I’m teaching in classrooms where there’s no fresh air and I cannot adjust the room thermostat, I am reminded anew about my heat sensitivity.

Now that it’s summer, and the heat and humidity have arrived in earnest to southern New England, I confront my MS heat sensitivity on a daily basis, in addition to my other MS symptoms with which I struggle.

During the first few months of 2020 — when much of the country was in lockdown in an attempt to flatten the curve of coronavirus cases — many people took to social media to lament feeling as though they were under house arrest. They said they hated not being able to do what they wanted because of this disease which, to date, has killed tens of thousands of Americans. COVID-19 is, indeed, lethal and merciless. Its effects on survivors can be devastating. But when millions are asked to shelter in place, and that sheltering makes them feel as though they’re going “stir-crazy,” I recognize that feeling because that’s what my post-MS summers have felt like.

In the summertime, I typically only go outside late in the day and only if the temperature and/or humidity level have dropped. I can go to the beach if I follow this routine: someone drives me — in an air conditioned vehicle — to the beach entrance. Wearing a cooling cloth around my neck and a hideous cooling vest over my bathing suit, I head straight for the water, often retching as flashing light appears in my eyes and I become light-headed. I drop my flip-flops, cooling cloth and vest on the sand and plunge into the water. In a few minutes, my nervous system stabilizes and the symptoms abate. In the water, I become me again. If I wish to hang out on the beach after getting out of the water, however, there has to be a sea breeze or a temperature/humidity drop. If neither of those are present, I need to leave if applying cold drink cans and ice packs to my face, neck and the palms of my hands don’t help.

For most of the summer, I can only go from cool locale to cool locale, or wait for a non-humid, cool day in which to enjoy the outdoors and non-air conditioned stores/restaurants.

In the era of the coronavirus, the restrictions on what I can do are even tighter. Many restaurants have set up outdoor dining in the hope that fresh air and the distance between the tables will prevent COVID-19 from spreading. That’s exciting for the general public, folks who are dying to get out of the house, but for me, that means I can visit these places only if the hot, humid weather won’t trigger my heat sensitivity. Going inside air conditioned restaurants — where the air is often recirculated — would alleviate my heat sensitivity concerns, but would make me fret about contracting the coronavirus, particularly since people have to remove masks in order to eat and drink.

For the members of the general public who are weighing the dangers of shopping in stores, eating and drinking in restaurants and bars, their decisions are likely based on the ability to social distance, how many people are masked and whether the establishment is potentially recirculating the virus via the air conditioning. For me, I consider all those factors, plus whether it’s hot and humid in that location and, if it’s air conditioned, whether I’m putting myself at risk for COVID-19 from recirculated air.

Since being diagnosed with MS, summers have been tough, requiring that I make daily risk assessments before leaving the house. In summer 2020, everyone has health and safety factors we’re calculating, as we decide when and where to venture outside our homes. It’s high stakes for everyone now.