Your Sick Friend
A new column by Casey Wait now on Blind Archive
Hi everyone! Beatrice here!
I am so excited to share with you all a new part of Blind Archive featuring the work of my comrade Casey Wait. Casey and I met years ago now through online disability and chronic illness communities. They are an artist and writer who has been working on a really wonderful column for their local paper called Your Sick Friend which has been one of my favorite things to read this last year. I asked Casey if they would be interested in including this body of ongoing work in Blind Archive as part of a long-in-the-works project of expanding BA to include sections highlighting and featuring work on disability, chronic illness, and the pandemic from longtime members, Mods, and Admins of the Death Panel discord community. Stay tuned for more additions to Blind Archive in the future—but don’t forget that this project runs on crip time and it might take a while to get going.
Casey’s column for The Montague Reporter to me has become an incredible documentation of a year in the life of someone who is medically vulnerable as they live through one of the worst years of pandemic normalization that we have seen yet. As we do not know what the next year will hold, and what further horrors, neglect and abandonment that we will have to contend with in the coming months—I’m excited to look back at Casey’s columns, and republish them here one by one, starting with the first from February 2022.
Each archived column will feature a reflection on the post from our current moment and then the original text as written by Casey at the time of publication. We are grateful to The Montague Reporter for giving us permission to archive and share this work here. Before each post, expect some reflection from Casey, and some contextualization from me about the state of Covid in the US when the piece was originally published.
February 2022, the month this first column was written, was a bleak moment in our recent Covid history: On February 15th, 2022 the New York Times reported over 115 thousand positive cases and over 2,800 people died of Covid in a single day. During the month of January 2022, about 60,000 people died from Covid in the United States, and in the two weeks of February 2022 before this first column was published just over 17,000 people died from Covid. Vaccines were out, boosters had already been made available, online Covid communities began to grapple with how much David Leonhardt’s pandemic coverage really sucked—and just how quickly it felt that we were being pushed back to normal.
This is the context and landscape of the pandemic in which Casey was writing, and it is important to remember just how recent this all has been, yet how far it often feels from our current moment.
To think of that moment now, in the context of how many pandemic protections we’ve seen rolled away since, is rather staggering. Before I pass it to Casey, I want to echo a line from their first column, which you are about to read.
“I’m writing this column so that every time you, dear reader, see a headline or hear a talking head invoke the meaninglessness of disabled death, you can think of me, Your Sick Friend – not some abstract, silent sacrifice to the economy and “the new normal,” but a human being with a full life and people who love me.” — Your Sick Friend
We, my dear sick friends, are not burdens, our deaths are not “pulled from the future” and we cannot be contained by the economic valuation of life. The only way we can stay alive another week is together.
xB
Introducing: Your Sick Friend by Casey Wait
[image descriptionColor photograph of Casey, a pale white nb with freckles and wire frame glasses, laying on a squishy green pillow, face framed by the hood of their pink tie dye sweatshirt.]
Hello dear Blind Archive readers,
I’m Casey Wait, a disabled and chronically ill writer, artist, and moderator of the Death Panel Discord based in Western so-called Massachusetts, occupied Nipmuc/Pocumtuc territory. I live on the banks of the Connecticut River in a tiny town called Montague.
For the past year I’ve been writing a monthly column called Your Sick Friend for our remarkable local paper, The Montague Reporter. As you’ll read below, I began my column because I was fed up with the way disabled people were being discussed in media about the pandemic—often as barely regrettable sacrifices, becoming sicker or dying so that the “normals” could get on with their lives. Your Sick Friend is a record of what my life as an immunocompromised person has been like during the on-going pandemic. It was important to me to write for a general audience, rather than post to already like-minded folks online. I wanted to reach people who weren’t necessarily used to thinking about the pandemic from a disability justice framework.
Beatrice and I thought it would be interesting to publish my column here, starting with the very first installment that came out in February 2022, to reflect on what has changed and what hasn't–both in my own life and thinking and in the world more generally–and to reflect on the politics and practice of writing about public health and personal health issues for a general audience. While I do stand by everything I’ve written in the past year, I wouldn’t necessarily write about everything the same way and I’m excited to have a place to reflect on that tension.
In this opening column, I wanted to push back on what Bea has referred to on Death Panel as the “spoiled identity” trope of disability–that once a person becomes disabled their life is defined by misery and perhaps is not even worth living. I tried to balance discussing the challenges of my disabilities while also emphatically asserting that becoming disabled has enriched my life as much as it has also caused me grief and pain. My hope was to show how disability has equipped me and my fellow crips with unique insight and skills for living in “pandemic world”, even as we also face greater risks.
One detail that feels especially relevant to me in this moment, a little over a year since this column’s publication, is the line “Through online disability communities, I’ve met my best friends – people who keep me alive, and who I’ve helped keep alive, too.” This has proven itself true a hundred times over. Right now my friends and I are crowdfunding for a disabled comrade in the UK who is living in untenable conditions. If you’re able, please share and/or contribute to their thriving.
I’ll be posting these reflections and past columns to the Blind Archive once a month! You’ll also see some shorter personal essays and illustrations from me here and there. I’m still writing monthly Your Sick Friend columns for The Montague Reporter, which you can find by searching my name on their archive, subscribing to the paper (it's full of small town charm and sprinkled with pretty radical reporting on local issues like police violence, education policy, indigenous rights and history, and more), or on my website.
Many thanks to Beatrice for this amazing opportunity to share my work with a wider audience. Thank you also to Mike Jackson, my editor at The Montague Reporter for all your support and for keeping our incredible paper pumping out issues weekly!
With Love and Rage,
Casey Wait
Your Sick Friend
[image description: Black and white drawing of a flower person in black opera gloves and go-go boots reclining on a squishy tasseled pillow. The words “ your sick friend” are arranged around their body. The corners are framed with pills, a pill bottle, and flowers with happy and sad faces.]
Original Publication Date: February 17th, 2022
TURNERS FALLS – Hello dear readers and welcome to my new monthly column, Your Sick Friend! Who is this sick friend, you ask? My name is Casey Wait. I’ve lived in Turners Falls for four years, and have been many people’s “sick friend” for… basically my whole life!
I was born with a rare genetic disorder called Hypermobile Ehlers-Danlos Syndrome (hEDS), a condition that affects the way my body makes connective tissue. Because the entire body is made up of connective tissue, this issue impacts many aspects of my bodily functioning. It took me nearly 30 years to get a diagnosis that explained the many debilitating symptoms I have experienced since childhood. I was finally diagnosed this past October, after an exhausting year of seeing 12 specialists, getting many invasive procedures and tests, and doing a huge amount of research and self-advocacy.
There is no cure for hEDS, and very few reliable treatment options. I live with a lot of pain and worsening mobility. At 30 years old, I need a cane or walker to get around in the world. I wear braces around my shoulders, hips, and wrists to stop my joints from sliding out of place. I have a personal care attendant who helps me cook, dress, and bathe, and I take nearly 20 pills a day to function at all. I am entirely financially supported by my partner and our housemate, as I had to stop working last year. I am an artist who can no longer draw because of the pain in my hands. I spend most of my days in bed, often dealing with more than one symptom.
And I have a wonderful life. Not despite all of this, but amongst it and because of it.
Becoming gradually more disabled over the course of my teens and 20s led me to my political home in Disability Justice. As Wikipedia explains it: “Disability justice is a framework that examines disability and ableism as it relates to other forms of oppression and identity (race, class, gender, sexuality, citizenship, incarceration, size, etc.).... Disability justice also acknowledges that ‘ableism helps make racism, christian supremacy, sexism, and queer- and transphobia possible’ and that all those systems of oppression are intertwined.”
Embracing my ever-evolving disabled, nonbinary, queer identity has been more empowering and healing than any of the odd treatments that I’ve tried or had suggested to me. (Ever heard of a coffee enema? No thank you!) Through online disability communities, I’ve met my best friends – people who keep me alive, and who I’ve helped keep alive, too.
My disabled friends and I swap medical horror stories, help each other prepare for doctors’ appointments, coordinate care for friends in crisis (even ones who live halfway across the world), share money from our very small fixed incomes to keep friends housed, and celebrate birthdays, engagements, and long-fought-for diagnoses.
Friends of mine have a fabulous Health Justice podcast called Death Panel, and the signoff for every show has become something of a mantra for our community: “Medicare for All Now, Solidarity Forever, Stay Alive Another Week.”
These words have never meant more to me than they have in the last three years. The COVID-19 pandemic continues to hit my community hard. Being disabled and loving disabled people is very scary in a pandemic, and would be under any circumstances! But in the United States, where healthcare is a for-profit industry and where anyone who is not healthy, white, straight, cisgendered, male, and wealthy is essentially disposable, “staying alive another week” is not a given.
Over the course of the pandemic, many hospitals, local ones included, have been over capacity. This often leads to medical triage – choosing to treat patients thought to have the highest likelihood of survival. If I walk into an ER with severe COVID-19, I fear being marked as “not worth treating” simply because I use a walker.
I decided to write this column after a friend said: “The only time you hear pundits, government officials, and politicians talk about disabled people anymore is when they’re assuring everyone else that ‘it’s only the already sick people who are dying.’” And she’s right! Rochelle Walensky, head of the CDC, actually used the word “encouraging” to describe COVID deaths occurring mostly among vaccinated people with preexisting conditions. On February 5, the New York Times buried a front-page headline that said “900,000 Dead, But Many Americans Move On” under Olympics news – and a story about how well the economy is doing despite Omicron.
I am writing this column because I am not moving on. My friends are dying, becoming more disabled, and living in fear for their lives every day this pandemic rages on. I’m writing this column so that every time you, dear reader, see a headline or hear a talking head invoke the meaninglessness of disabled death, you can think of me, Your Sick Friend – not some abstract, silent sacrifice to the economy and “the new normal,” but a human being with a full life and people who love me. I am writing this column so that people can hear directly from someone with several pre-existing conditions and know that my life, and the lives of others like me, matter and are worthy of protection.
A tenet of Disability Justice is the phrase “Nothing About Us, Without Us,” so here I am – a sick person here to talk about sickness! Navigating the health system, changing abilities, and finding creative ways to connect to the world when you have to stay home or in bed all day is pretty much my specialty.
This column will be a monthly check-in where I give a window into what it’s like to be disabled, get medical care, and have a social life against the backdrop of COVID-19. I’ll also share wisdom I’ve gained from my sick and disabled friends that could help us all get out of this crisis alive!
Until next time –
Your Sick Friend
Right now my friends and I are crowdfunding for a disabled comrade in the UK who is living in untenable conditions. If you’re able, please share and/or contribute to their thriving.
Thank you for reading the first installment of Your Sick Friend! Like I said, I’ll be sharing these columns here once a month. You can also expect other writing and work from me sprinkled throughout the month on a less regular basis. Find more of my work here and donate to The Montague Reporter here. Please share this post and subscribe to Blind Archive!