THE ONES LEFT BEHIND

By: Daniel G Wilson | Photo by: Daniel G Wilson | Art by: Michael Rancic

I have had many bad days in my life, so awful they remain burned into the black matter of my brain: the day I got my first diagnosis; the Christmas I spent stuck in the emergency room; the day my father died; and even the day I lost my best friend. Those days chipped away at the core of my being like an artist taking a chisel to clay, forever changing the trajectory of my life and outlook on existence and humanity itself. March 11, 2020, the start of the lockdown, was another such day.

I am a long-time sufferer of autoimmune disorders, primarily neurosarcoidosis, a disease that causes granulomatous lesions to grow on parts of the body, and severe gastrointestinal issues that cause myriad defects when I experience a flare-up. Sarcoidosis is the most frightening because it directly impacts my central nervous system. Insomnia, chronic pain, disrupted mental capacity, and complete loss of motor function in my limbs are a small sample of the maladies my sarcoidosis can cause. By comparison, my stomach issues seem less horrifying despite disturbing memories of vomiting blood into a bucket while my stomach literally twisted into a knot.

I am also a musician, one of many artists who suffer from conditions that force them to be conscious of their bodies at all times and how they live in the world. Daryl Palumbo of Glassjaw is one of the most famous examples in punk music and one of very few people I know of who wrote a song about their experiences with an autoimmune disease. Dan O’Bannon turned the horror of his experiences into art by writing the original Alien movie. Comedian Bernie Mac’s death always stood out to me because he died from complications caused by a different variety of the same diseases I have. Part of the reason why so few prominent artists talk about autoimmune disorders is the fact that these are not pleasant, widely known about, or even easy to understand. These conditions exist because our bodies are, in a way, fundamentally different. Where a healthy immune system is supposed to keep the body running in top form, auto-immune disorders are a cruel inversion that cause the very thing that is supposed to keep us alive to become a threat to our bodies. The experience is like having a body that can leave us in a state of humiliating and debilitating pain when left unchecked—and, in many cases, lead to our death. There is no true cure because you can’t “cure” the body you were born with. It marks you as an outsider. For these reasons, it comes as a shock when members of popular touring bands like King Gizzard and the Lizard Wizard frontman Stu McKenzie announce that they must take a break from touring to deal with auto-immune-related health issues that were previously never mentioned.

When the first COVID-19 lockdowns were being announced in Canada, I felt a familiar feeling, the deep dread of re-lived trauma. I’d kept up with the news, so I knew what was coming. Everyone thought COVID-19 was a simple virus that would be gone in a few weeks, or a few months at most. But I didn’t have to be a student of history to know how world governments and general populations would react to a global pandemic of an unknown disease—being in and out of the health-care system for half my life was enough to prepare me for the worst of this new threat. In hindsight, I would be surprised by how low the bar turned out to be.

Daily reports of COVID-19 numbers were the metric by which I gauged how widespread the virus was in my local community and my odds of contracting it from even the briefest interaction. Thanks to restrictions like occupancy limits, vaccine passports, social distancing, and mask mandates, I was able to experience semblances of normality⁠— albeit with caveats. I could see my bandmates during short periods when case numbers were down but restrictions were tight enough that everyone treated public health as a priority. My bandmates and I were able to record an album by ourselves (mostly over the internet) and even got to record a live set (again, with no crew except me and our drummer). These strictly scheduled meet-ups where everyone was masked at all times were some of the only consistent human contact I had outside of my mother, with whom I live, and my brother, who drove me to my appointments.

These moments did not last. I have not seen either of my bandmates in a year and half. With no restrictions, slowed vaccination efforts, a decline in public safety measures, a lack of consistent case reporting, and the forgoing of mask mandates, the probability of my bandmates spreading the virus to me is much too high. They are still young and need to live their lives, and so do most of the people I have not seen in years. I can’t ask them to be cautious and not enjoy their youth just so we can hang out or make music, and I wouldn’t expect them to even consider it an option.

The loss of identity that comes with not being able to perform live or interact with other musicians face-to-face has been profound. Music gave me so much. It gave me confidence when I felt hopeless, community when I felt alone, and a guiding light when I felt lost in a storm of pain and fear. To have so much of what made music special for me stripped away in the blink of an eye due to a literal force of nature and human error and be left with no recourse but to return to the confined existence I thought I had left behind is a nightmare come true. I’ve spent so many hours and weeks reevaluating my life, cursing the days when I thought I could finally live with tomorrow in mind and put things off for later. A highway of options is now indefinitely closed. The music has died.

I personally know numerous music industry workers who are in a similar position because they’re immunocompromised themselves or taking care of an immunocompromised loved one and can’t risk being a vector of infection: people with conditions that directly impact the immune system, like auto-immune disorders, or require medication that impacts it, such as treatment for cancer or HIV/AIDS. In our talks, we air our misgivings about the current attitudes towards public health and our shared pain at not being able to freely do the things we used to. So many musicians have been left behind by both the world and the industry in which they work. In many cases, they have even been left behind by the very scenes they used to call home.

Over the past three years, I’ve been constantly reminded how little my life matters to the society in which I live, whether by strangers on the news blocking hospital entrances in protest against public health measures or people in my own family who tell me with no sense of irony that the vaccines are the real danger and how it is all a conspiracy, people who reveal how much their “right” to not be inconvenienced matters more than the health of their community. 

The music industry is not very forgiving either, to those who are unable to perform or are unwilling to follow the status quo including conforming to a set image. This is an unspoken truth of not only the highest levels of the mainstream music industry (the realm of stadium tours by multiplatinum pop stars) but even in the DIY world where great pains have been taken to avoid the pitfalls of the former. Live performance has always been crucial for gaining career traction, developing a network (both supporting and professional), and forming a genuine sense of camaraderie with like-minded individuals. This is how scenes are born, which poses a problem for those of us who are physically unable to “play ball.”

When musicians are expected to play through physical maladies as mild as the common cold or severe as a broken leg, it becomes difficult for people to sympathize with those who don’t want to perform in an enclosed space with potential vectors of a disease to which they’re uniquely at risk. Without burning a bridge, how do you tell a promoter you can’t play a show because you don’t want to contract a virus people think does not exist anymore? How do you tell your “friends” you can’t attend their  unmasked shows, or even hang out with them like you used to, without sounding avoidant and non-committal? These are questions so many of us have had to ask questions I have asked myself in cold sweats in the middle of the night as I wonder if I will ever get to exist in the world again.

The way the live music industry operates is incompatible with the measures necessary to prevent the spread of disease. Most venues rely on selling alcohol to survive, and patrons cannot drink if they are expected to wear a mask at all times. Promoters and bands need as many people in a room as possible to ensure a profit, which has led to overbooking venues. Concert organizers have shown that they do not want to require patrons to be vaccinated to attend. In some cases, those patrons even become violent if such measures are proposed. Venue staff do not want the hassle of ensuring people follow mandates they themselves might dislike. And finally, the majority of venues may not have the desire or means to update their ventilation or hygiene protocols (evident to anyone who has ever been in a venue washroom). Due to these factors, the majority of music venues will not enforce safety measures unless prompted by government mandates. Without such mandates, responsibility shifts to venues, who then pass it onto artists and concertgoers. As a result, artists find themselves in a difficult position: they risk alienating portions of their audience, and they risk missing out on much-needed performance opportunities and potential revenue.

So much could be done to improve the conditions for immunocompromised individuals on a governmental level and a societal level. Attitudes about illness, disability, and public health need to change in practical and tangible ways. The notion that personal convenience is more important than the health and safety of those around us has to be challenged. 

Years into the pandemic, it is clear that the music industry hasn’t learned many lessons about how it could transform the sector into one that puts the health and safety of performers, workers and audiences first. For the sake of artists like myself and immunocompromised peers, and others who love music but recognize the need to protect everyone as the industry gets back to work, change is needed⁠—now.