by Juli Lasselle
The ableds are complaining. They’re doing analyses on the effects of Covid-19 lockdown isolation or close quarters with their families: the depression, the strain on relationships, the tedium. They’re writing op-eds and Medium posts about what personal discoveries they’ve made while doing puzzles or making Tik Tok videos or meeting the neighbors they never had before. They’re posting twitter threads about the extra costs that come with not being able to leave their homes for work or school like increased utility bills, toilet paper, grocery and restaurant delivery charges. The yearning to return to their normal lives is palpable. Their pre-Covid lives. But not all lives exist within the able-bodied understanding of normal. Normal life for the chronically ill is often one of isolation. Depression. Strained relationships. Expense. The non- or poor functioning chronically ill are the Other to the able-bodieds’ normal. Eight years ago, I lay down and couldn’t get up. The sun rose and set, taking a southernly trajectory in the winter months, an overhead one in the summer, light stretching out in a crisscross pattern across my living room wall in the morning and glaring off my neighbor’s front window in the afternoon. My back got sore and my belly soft as my green velvet sofa deepened with an egg-shaped indentation the size of my body. Fog seeped into my brain until I lost names first, then words, objects, purpose, and at times the will to continue. I said No to so many invitations they stopped coming. Friends drifted away. They don’t grasp the chronic part of chronically ill or they don’t believe me because I don’t present as sick in a way they understand. Cancer they understand. Diabetes they understand. But lay some Epstein-Barre or adrenal fatigue or mold toxicity on them and their eyes glaze over. Maybe it reminds them of their own fragility. Or maybe it’s simply because illness is boring. It’s boring for me, too, except I can’t walk away. I have to stay; it’s in my body. What I’ve realized is if people can’t recognize the word for your illness, can’t see it on your face like a garish shade of lipstick, they forget you’re ill. They stop taking it into consideration. They forget you. I have been forgotten. I’d moved home and left my teaching job to take care of my mother. She died two years later. I white-knuckled my way through my last year of graduate school while my beloved dog battled cancer. By the time my dog died, I was crippled with fatigue and grief and my HMO doctor couldn’t (or wouldn’t) help me. I was alone, I was sick, and time stretched out in front of me like a neighbor who parks in front of your driveway and lets their dog bark in the middle of the night. The first three years, I didn’t know what was happening with my body. In year four I found a naturopathic doctor who would listen, test, and set a course of action toward recovering health. During those first years my life got real basic real fast: meds, food, sleep, maybe a shower. I could barely move so there was nowhere else for me to go but inside, into my thoughts and my feelings. The only other option was continued mental suffering since I didn’t have access to most of the distractions the able-bodied do on the regular—I couldn’t do much more than lie down, nap, watch TV. It’s like being the protagonist in a horror film—there is no safe place until you face the danger and realize you had the strength, courage, and wiles all along. That’s the only way to survive. There’s another difference besides Covid restrictions being imposed from an outside entity and the restrictions chronic illness requires if a person is to recover some functional health. Covid restrictions have a projected end date; with chronic illness a person has either a non-functioning life or a functioning one and there is no end date barring death. And so, when the ableds complain about how they’re bored or depressed or anxious, my response is always the same—you can get right with yourself or you can suffer. It sounds harsh but it’s true. There’s no way out but through. In the land of Freedom, we are taught to perceive restrictions as limitations when, in actuality, they can be a door to a deeper experience if you choose to pick up that gauntlet. The privilege of having that choice is the privilege of being able-bodied. It’s been a small comfort to watch the ableds grapple with the imposed restrictions, the interruption of their pre-Covid lives. I have felt less alone, relief in the now mutual experience of isolation, uncertainty, and anxiety. “See, see!” I want to shout. “See what it’s like for me, for so many of us.” But the public focus is on the short term, on how to persevere until it’s over. For them, it will be. For me, I will keep on with my regimen of meds, supplements, restricted diet, and the myriad of other habits I must maintain to function. For me, hope rises and sets, casting shadows from bad days and an untrustworthy body. To be betrayed by my own body has undermined my trust in myself and in others, in food, in sleep, in exercise. What was regular life is now rife with boobytraps that could lay me out for days, keep me up all night, make me vomit or unable to breathe. It’s impossible to feel safe when the vehicle—your body—in which you navigate the world is undependable. And if you can’t feel safe, you can’t thrive. Every month I order two ten-pound bags of shelled peanuts to be delivered. I toss handfuls of peanuts onto my front lawn and whistle. They come. My crows. I pour fresh water into a ceramic dish my mother made and retreat inside. I watch them from a supine position on the sofa. One pair of crows has been coming for three years now. The first year they brought one chick with them. Last year they brought two. One of the now grown chicks still comes with them. And sometimes a whole murder lands first on the overhead wires like so many discordant notes and then, one by one, swoop down to the ground. Every morning they come. Every afternoon. I know when I stop feeding them they’ll find someone else but, for now, they’re my company. Before Covid, during Covid, after Covid. Aside from wearing a mask and seeing my doctor by phone rather than in person, my life hasn’t changed. I still get up at 5 and go to bed by 9. I still walk my new dog every day. I still spend an inordinate amount of time lying down, watching the light change with the hour and the season. But eight years later, my memory is coming back, my ability to find the right word, to remember a name. I haven’t found a purpose but I have found a desire to keep going. The vaccine is here. The rollout is proceeding faster than expected. “Normal” life will resume. The ableds will go out into the world. They’ll go to restaurants and movies, concerts and museums. They’ll have parties. They’ll hug and laugh and dance and make love. Their normal lives will carry on much like before and they will rejoice. But those that are debilitated by chronic illness will not. We will keep doing what we’ve been doing since long before Covid. We’ll get by as best we can. Don’t forget us. * Sixty percent of Americans have been diagnosed with a chronic illness.
by Juli Lasselle
It was lovely hearing your voice yesterday. It’s been too long. I’m sorry I won’t be able to visit over the summer but this global pandemic has hampered all my plans. I’m glad you had a good Memorial Day weekend visiting your friend in Chicago, though. Flying at this time must be relatively easy with so many people staying home. It’s nice that you can benefit from that. Your trip to France sounds exciting. Two weeks! I’ll keep my fingers crossed that they’ve opened the borders by then so your travel plans won’t be jeopardized. Unfortunately, my owns plans to go to Sicily are on hold until we know more—a second or third wave later in the summer or into the fall and I’ll cancel. The friends I’m going with are still eager to go, not wanting to lose their money on non-refundable deposits or flights but what price health, amirite? I haven’t brought up the possibility of rescheduling for next year but, in my mind at least, that would probably be for the best. In the meantime, I look at pictures and watch videos of Italy—the pristine water, the views, the historical sites, and the famed mummies I’ve been dying (wink wink) to see since I first heard about them last year. I realized it’s been ten years since I’ve been able to even consider international travel and am doing everything I can to be able to go in September. Did I send you the link to the place we’re supposed to stay? It’s stunning. Thank goodness for generous friends. None of this will matter, of course, if we can’t go, and I’ll have to content myself with videos. Please send me pictures of your trip, though. Provence at that time of year is supposed to be gorgeous. And with so few tourists this year it’ll be extra special. It sounds like your business is going well after that dip at the beginning of the Shelter in Place order. I know you’re healthy and think you shouldn’t have to follow that order like the rest of us but I’ll forward you the email from my Naturopathic Doctor with her recommendations for herbals and other supplements in case you’re interested. Maybe there’s something in there you would find beneficial. The four herbs that help combat viruses that I’ve been on since last December are working to de-activate the EBV (who knew having mono as a child could be so debilitating as an adult?) along with vitamin D, zinc, and the vitamin C IVs I get every couple of weeks. We’re going to have to agree to disagree that taking high doses of vitamin C are as effective as the IVs. I’d tell you to Google the research but, as you said, you don’t have time to fact check everything. Listening to you talk about how happy you are most of your clients continue to come in even during this national emergency, I realized I actually miss working. I bet you never thought you’d hear me say that! I can’t believe it’s been eight years since I had to leave my job because of my health. Sometimes I think I might be able to go back to work but then I have a bad day—a CFS flare-up or something—that turns in to a bad week and, there I am, supine on the sofa again. (That reminds me—the name of that store I ordered the replacement foam for my sofa cushions is called The Foam Shop. They cut to spec.) Thanks for the bird seed suggestion, by the way. I can now watch a parade of birds and squirrels out my front window on those days TV or a book is too much for me. My neighbor told me they’ve nicknamed me Snow White. Too funny! I better sign off now. I’ve got to get this urine test to the post office in time to ship overnight. I hope it comes back negative. Can you imagine having to deal with yet another chronic illness?! Wish me luck. Love, Juli p.s. Costco is now selling disposable masks if you need some for your clients since I know you don’t wear one yourself.
Sent to us on: March 6, 2021
How will the Coronavirus Pandemic shape storytelling for the years to come?
Calling all Dispatchers!
San Francisco Creative Writing Institute is pleased to announce we were awarded California Arts Council Local Impact Grant!
With support from the California Arts Council, San Francisco Creative Writing Institute will present Dispatches from Quarantine: hybrid storytelling events and writing workshops.
The project is scheduled from January 2023 to August 2023! Come to our next event on May 1, 2023 (an online writing workshop) and May 3, an in-person Poetry reading at Medicine for Nightmares!
We will be broadcasting the public readings and discussions on our youtube channel as well as hosting four creative writing workshops with writers from diverse genres. The project will continue to be interactive as we will encourage viewers/participants to send in their “dispatches” to be published on our blog, keeping it alive as a living document.
We invite you to submit a dispatch:
What is your Covid story? How will you tell it?
You can send submissions in any format to us via email at: All genres will be considered for publication on the blog. email@example.com The theme should be somehow related to this time of Coronavirus. We are particularly interested in posts/ideas/writings from 2022-23.
Submissions can be sent by email to: firstname.lastname@example.org
Categories: Journal Entry, memoir, Reopening, The Reopening, The Surge, The Vaccine
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