The creation of this piece was commissioned in part by the Verein Fraufeld. A version of it was performed at their salon at the echoraum in Vienna on the evening of 17 September 2024.
Dear friends and colleagues,
thank you for your interest in my work as a composer and writer. Following a second COVID-19 infection I now have Severe Myalgic Encephalomyelitis [my-AL-jick en-SEFF-aloe-my-el-EYE-tis], also called ME or ME/CFS. Muscle weakness, loss of motor control, tachycardia, blurred vision, nausea, cognitive dysfunction, memory loss, digestive problems, vertigo — all this plus a constant, burning, neuropathic pain are among the dozens of symptoms I experience. Every time I exert myself — using my muscles or my mind — the symptoms become worse. I now have no choice but to spend at least 22 hours a day, every day, lying flat in bed in a dark, silent room. My neurologist can give me no prognosis. My internist can give me no prognosis. There is no prognosis because my body has arrived at the outer reaches of medical understanding and so right now the only music I have for you is this incandescent keening.
I wanted to be there with you in person tonight. Instead, I’m lying in bed and breathing softly and listening as a dirge coalesces in the close air of my quiet room. This dirge is not a lamentation of my life. My grief is for those who, in this moment, are falling sick with the same disease that confines me to bed. This song is a ceaseless siren, a warning of an uncontrolled wildfire burning dangerously close to your home.
My case of ME was initially triggered by a viral infection when I was very young. It became increasingly severe after subsequent viral infections. Despite acute symptoms, I lived undiagnosed for decades until I was no longer able to walk.
My case of ME is typical: our disease often begins with a viral infection and can become worse with each new infection. We all experience symptoms for months or years before diagnosis — should we happen to be among the lucky few to ever receive a diagnosis. There are neither approved treatments nor a cure.
ME is a post-viral disease that is currently incurable and can become worse with every new viral infection — especially if that infection is COVID-19.
The COVID-19 pandemic continues. COVID-19 is not a cold, it is a serious vascular disease that can damage or disrupt your immune system for months or years after the initial infection, even if the infection itself was mild and you show no symptoms of Long COVID.
The illness currently known as Long COVID is often just another name for ME and other related post-viral diseases. At least 7-10% of all new COVID infections will result in symptoms of Long COVID. Every day, young, healthy people are being flattened by Long COVID, and children are very much at risk. We are living through a pandemic of disablement caused by Long COVID and ME.
Since the beginning of the COVID-19 pandemic, people with ME and other post-infectious diseases have been warning that this new virus is going to drastically increase the number of people living with severe chronic illness. We are sadly being proven correct — it’s estimated that the number of ME patients in Europe will double in the coming years. We are a chorus of Cassandras, too sick to do anything but whisper 'fire' while watching you run into the flames.
I am lying at home in bed and moving my body as little as possible and very softly singing this very loud song: I have a serious, incurable disease that you have probably never heard of, but which you and your loved ones are increasingly likely to acquire as you are repeatedly infected with COVID-19. We are all becoming more broken with every new mutation of the virus.
My message is essentially this: I am you. I will haunt you through my computerized window to the world until you hear this.
I wanted to be there with you in person tonight. Instead, I’m lying at home in bed because I am also made of meat, just another coincidence of cells, vulnerable to the long-term effects of repeated COVID-19 infections.
I wanted to be with you tonight, sitting in a room with my colleagues, discussing the connection between music and our bodies. But I do not have the luxury of sitting in public and thinking in the abstract. Even if I were still physically capable of getting out of bed, of getting dressed, of leaving my home, I could not sit in this room with you right now because there are no COVID safety measures in place here — no ventilation, no air filters, no masks.
COVID-19 is an airborne virus. It is transmitted from human to human almost exclusively through the air, and the majority of transmissions happen indoors when people are not wearing masks.
During this ongoing pandemic, people with illnesses like mine — and our astute friends who want to avoid acquiring an illness like mine — must avoid indoor spaces where others are not masked.
Masks work best when the person who is currently infected with a virus is wearing a mask. If we want to avoid becoming infected ourselves, masks protect us only moderately well for short periods of time if the infected person is exhaling the virus freely into the room.
I wanted to be there with you in person tonight. I wanted to put on my favourite clothes and brush my hair and be part of your conversation. But even before my illness became so severe I could not safely have done so. Since mask requirements were lifted, my creative community has become completely inaccessible to me. There is no indoor performance space, no rehearsal space, no cultural space in our city right now that is accessible for my body.
As creators of culture, we can create spaces that safely welcome our Disabled, immunocompromised and chronically ill colleagues and audience members — spaces that also work to stop the pandemic of disablement caused by Long COVID and ME.
To create these COVID-safe cultural spaces, reduce the transmission of the virus through the air:
COVID safety techniques like masking are not all-or-nothing behaviours. Do as much as you are able to do in every situation. If you stopped masking completely in 2022, now is a great time to begin again. If you've already had a few COVID infections, it is perfectly logical to start masking again now. Every small action helps to make our creative community safer.
My body is not there with you tonight. Many others are also missing from this space. Like us, you are also just another meaty unit, vulnerable to Long COVID. But you're not just one individual body. You're also part of this community and this society, made up of millions of bodies, all vulnerable, all enduring an ongoing pandemic together.
I’m lying at home in bed, forced to remain far away from you, far away from the inaccessible spaces you inhabit, far away from a society that is trying very hard to pretend that I do not exist. To assert my continued realness and to make certain I am heard, my gentle keening songs now end in a shout.
I shout this because our creative community is being systematically weakened by an irrational, ableist response to the ongoing pandemic. I shout because it is very much within our power to do something about this. I shout from frustration, from urgency, and from my deep desire to return to making music with you some day.
It is our job as artists to create culture. We have a duty to use this power to create a culture of behaviour that acknowledges our shared biological reality. We have a duty to use this power to create a culture of care and kindness through COVID-safe behaviour.
Wearing a mask is fundamental to creating culture within a framework of intersectional feminist activism. More than 80% of people with ME are women. Wearing a mask is an essential part of anti-racist work, because the ongoing pandemic continues to disproportionately affect BIPOC communities. Wearing a mask is Queer justice, because Trans people are much more likely to be severely affected by Long COVID. Wearing a mask acknowledges that poverty is a risk factor for ME and Long COVID, and that managing these diseases is impossible without long-term paid leave from work. Wearing a mask shows Disabled people that we are welcome in your spaces, that you care about us remaining alive, that you understand that we are also real, human persons. Wearing a mask is the best way to reject the capitalist notion that maintaining the economic status quo is more important than our own health, the health of our families, the health of our audiences and creative collaborators. Wearing a mask is a sign of strength and sophistication. Wearing a mask is radical love.
We are alive, human artists in real, vulnerable human bodies creating culture together during an ongoing pandemic of a serious, airborne disease. Wearing a mask is what we do.
I remain, still breathing, Caitlin
PS Help us to solve the ME/Long COVID mystery: