Why the healthcare system needs to be reformed and how chronic pain has affected my life as a performance artist and worker.
My original vision for this platform was to have a space to write about lighthearted things that interest me like horror movies, retro games, and other pop-culture stuff; things that inform my work as an artist but may not fit the tone and aesthetic of my Instagram. Nevertheless, here I am making my first post about the decidedly not lighthearted topic of chronic pain, a thing I will have been dealing with for four years at the end of this month, and that for many others is a lifelong affair that they suffer in silence.
*CW: Self Harm, Body Stuff*
For the last eight years the main focus of my artistic practice has been making performance art. These years split pretty neatly into two eras for me: pre-chronic pain and post-chronic pain.
My pre-chronic pain years (spanning the first four years of my practice) were about excess. My work at this time was mostly informed by performance artists like Ron Athey and Regina Jose Galindo, people whose art explored the aesthetics of pain as a vessel for reaching some greater truth or profound empathy.
It was also influenced by pop-culture icons like Iggy Pop, the legendary punk rock pioneer whose high-energy live performances typically included bleeding and broken glass; and professional wrestler Mick Foley, whose “every-man” physique belied an ability to survive incredible amounts of pain that would incapacitate his more musclebound peers. A typical early performance of mine may have involved being whipped by audience, force-feeding myself till the point of vomiting, slamming myself onto floors or walls, and walking on glass. It helped that like my pop idols, I have a high tolerance for pain.
As I became more confident as a storyteller, I began to rely less on shock value during my performances. I didn’t abandon spectacle outright, but became better at knowing when to withhold it and when to unleash it. Instead of constantly punishing my body during performances, I began to celebrate the things I could do with it: how many pushups can I endure, how long can I hold this challenging yoga post, things of that nature. These actions may sound mundane, but when done with enough intensity and outside of their usual contexts, they can feel transcendent. As a short POC male I’m not really encouraged by society to like my body (I’ve been body shamed in articles reviewing my work more than once), so making work that celebrated how much I enjoyed inhabiting my body felt very subversive to me.
Because of the art I was making, I became very obsessed with fitness at this time. I had been extremely physically active during my high school years, but totally neglected my body in college (a habit that followed me to NYC). Now physical fitness was a core part of my artistic practice, and therefore part of my identity and every day life. I would cook myself simple healthy meals, do regular yoga and body weight exercises at home, and run several miles in the evening if I hadn’t already run a 5k in the morning. Running was my exercise of choice. It gave me a designated time of day where I couldn’t look at a screen: it was just me, the park, whatever deathrock tunes were coming out of my headphones, and my thoughts. It became like a form of meditation and provided me with time to think about what my next art piece would be.
While my high tolerance for pain was an integral part of my artistic toolset, it also allowed me to ignore the warning signs that something was wrong and I was pushing myself too hard. I was developing a small sharp pain in my right shin, one that was ever present but easily ignored. A performance involving running was ironically the thing that put this pain over the edge. For years I did not regret doing this performance: it was a collaboration with an artist that I admire and for a festival that I hold in high regard; though with the benefit of hindsight I can say that I shouldn’t have ignored the warning signs like I did. The small sharp pain became a large dull throbbing pain that was impossible to ignore.
For one reason or another, the full time jobI had at the time could not or would not offer me health insurance. This is likely the reasonwhy I am still experiencing this pain four years later. With no health insurance I couldn’t afford to see a specialist or even a primary care doctor and relied on urgent care clinics to diagnose what was wrong with me. The medical staff at the first clinic I went to did their absolute best, but the incorrect diagnosis I received from them set me down the wrong path. The worst part of this was being told over and over again that rest and a little ice was all I needed. Six weeks and I’d be up and running again… when these six weeks came and went and I was still in pain, I was told I wasn’t resting hard enough.
My second era as a performance artist began. I made an effort to turn down opportunities unless they really excited me and when I did perform I had to change things up. At first I would try to do physical things that wouldn’t utilize my legs: pushups were still okay but using my trusty jumprope was out of the question. I’d wrap my legs up with various sleeves and braces and bandages and hope they’d offer enough protection without getting in the way.
I told myself that I needed to start making lower-key work, but never quite got the hang of it. Subtlety was just never on the cards for me. I would directly address the audience during my performances and began relying more on props again, one time I even took some intense prescription painkillers as part of an improvisational piece.
While my priority at this time was making sure my performance art didn’t suffer, my performance at work certainly did. The job I had was 10 hours a day for four days a week, most of that time spent on my feet. Some days the pain was so bad at work that I could hardly think about anything else. I gave a customer an incorrect answer within earshot of my boss once, and when he asked me why I got that wrong I complained about the pain I was in and got told to suck it up. My boss and I both came to the same conclusion; I started to look for a new job and he started looking for a new employee. The day before I was going to put in my two weeks, I was told there was no room on the schedule for me anymore.
My next job offered me benefits, including health insurance, and 8 hour work days sitting at a desk. I wish I could say that was when my story took a turn for the better, but my one year at this new job was one of the toughest in my life. The culture there was extremely anti-employee, benefits were constantly being cut, and there was absolutely no solidarity between the workers in my department. The product we produced was known to be faulty, it was our job to convince customers otherwise, and I simply didn’t have the stomach to do it. Employees who were ruthless enough to fall in line were promoted and encouraged to police their fellow workers. It wasn’t uncommon for people in my department to leave the building for their lunch break and never be seen again. I would have done the same if I had any money in savings or if I didn’t need the health insurance. The health insurance was the light that propelled me forward. It meant that I could finally see a specialist. The first thing they did was put me on crutches, I used them for almost two months, and had to incorporate them into several performances.
The pain and terrible work environment meant I was making some of the angriest performances of my career at this time. One performance that I hoped would become a transformative experience for me, one that would allow me to contextualize my pain and anger, instead became a miserable experience. The fact that a person who reviewed it felt compelled to negatively comment on my body made me contemplate leaving art altogether. I just wanted to feel “normal” again and make the type of art that excited me. The truth was I had constructed an ideal version of myself in my head, one that I considered the only valid version of me, and then I grew frustrated that I was stuck in a sort of limbo between having been that person and being that person again. I wanted to run again and to fit into my old clothes.
I wasn’t able to start physical therapy even though I now had a new diagnosis and a referral. Work told me they would accommodate me taking time off for therapy, but they also started being even stricter about me making certain quotas. Only a few months in and enough people had quit or been fired that I was now the senior-most employee in my department. They resented the fact that I wasn’t leadership material, and they made that clear. If I took time off to see a therapist, I would have to work significantly harder to pump my numbers up. I had to make a choice between my mental health and physical health, and I ended up choosing my mental health. The day I was laid off and given a severance package was one of the first days I felt completely at ease in years.
I soon got another job that offered insurance, though it was more expensive and covered less than what I had before. I was also back on my feet for forty hours a week again, which meant I eventually lost a lot of the progress I had made regarding my chronic pain; my pain got so bad again that for a while I was back to using crutches. The more consistent schedule of this new job meant I could finally see a physical therapist regularly. The first therapistwho saw me told me to take off my shoes and hand them to him. He looked at the way the heels had been worn down and was able to diagnose the source of my chronic pain immediately. For as long as I’ve been walking I have caused the heels of my shoes to become worn down in a specific way, a 45 degree angle sloping up from outside-in — this was a tell-tale sign that my extremely flat feet caused me to overpronate (more than he had seen anyone do ever). At this point I had been waiting fora proper diagnosis for almost three years, and this man was able to provideonewithin minutes of meeting me. Armed with this information, my girlfriend bought me a pair of therapeutic shoes built for my foot type and I have been wearing them for over a year now… I used to have to replace my shoes every four to five months. I am still not healed yet, our budget didn’t allow me to attend therapy indefinitely even with insurance, but those therapy sessions I did greatly improved my quality of life.
I can’t help but think about how different my life would be if I had this diagnosis the moment I first needed it. Would I be in good health? Would I be working on lowering my 5k time right now? Would I have been able to quitthat previous job that caused me so much mental anguish? Would I still feel like I was stuck in a transitional state?
This experience was one of many that opened my eyes to class consciousness. My chronic pain was not the result of one ill-informed art piece, or even years of “going too hard” in the name of performance art or fitness. It was the result of living under a system that put lining the pockets of insurance companies ahead of my well being. Insurance companies are gatekeepers who exist to make money and deny coverage. They exist to keep you tethered to jobs you would rather not do. Those in power have a vested interest in upholding this structure, why else would they make Medicare-for-all sound like such a pie in the sky proposition, when other countries have similar systems in place. I’ve only dealt with chronic pain for 4 of my 34 years, and I can’t imagine how much the system has failed those who have dealt with it for all of their lives. Those suffering in silence from mostly invisible ailments.
Since receiving my correct diagnosis I have made some of the best performance art of my life. Sure, I am not getting the amount of attention that I was before my pain started, but each opportunity gets my full attention. Whatever anger I felt towards myself when I first got hurt is now directed towards the proper targets, and I can still get physical when I need to. My series about the death toll in Puerto Rico following Hurricane Maria (2,975) is probably my proudest statement as a performance artist, and the fact that I don’t currently “look” like I can perform the 100 pushups it requires adds an extra layer of meaning to me. Nevertheless, I hope to heal fully soon to be able to go for a long run when I want to clear my mind.
As I write this, I must acknowledge that the chronic pain in my right leg feels like a secondary concern in relation to my now ongoing battle with COVID-19. Out of the frying pan and into the fire. I started feeling the symptoms of COVID-19 in early April, and while I’ve mostly recovered I am still feeling residual symptoms here in September. My initial case was a mild one compared to many other COVID-19 long haulers who have even worse ongoing symptoms. One of the worst aspects of being a long-hauler is being told by medical professionals that I am being paranoid or that I simply need to lose weight, while I sit in front of them with intense chest pain gasping for air. I once again feel like I am in a transitional state, except this time I am not alone, there are thousands of others experiencing my same pain.
The US healthcare system is not only failing chronic pain sufferers and coronavirus long-haulers, it is failing every poor person, everyone living paycheck to paycheck or making minimum wage. We can’t just hope and pray that those in charge grow a heart, the system must be dismantled and re-built from the ground up.