Losing the Mask

I think of myself as a brave person. I am often terrified (sweating, shaking, nauseated) of living, but I go on doing it anyway. This was not always the case. As a preteen, I was bullied by the popular girls. I faked a stomach flu to stay home from school on more than one occasion, horrified by the idea of facing those particular shiny, well-dressed demons. As I aged, and as I was encouraged to fake it until I made it, I learned to compartmentalize. I’ve become excellent at performing under pressure, of putting on a smile while I melt down inside.

This is a skill many people in the service industry learn quickly, and a skill that capitalism requires of almost all of us to some extent. No matter what personal disasters may be occurring, we must keep performing our roles. It’s a skill I’ve honed so finely I no longer am aware I’m utilizing it. My happy employee mask permeates my behavior at all hours of the day.

It’s not the only mask I wear.

After being diagnosed two years ago with a chronic, terminal autoimmune disease, I was put on a course of high-dosage steroids to kill my immune system. Let me explain: Your immune system is meant to protect your body from outside harm. When you touch your phone to your face after it’s been sitting on a cafe table, your immune system protects you from the germs that enter your body. When you have an autoimmune disease, however, your body perceives itself as a risk, and attacks accordingly. The treatment then is to shut off your malfunctioning defense system, leaving you vulnerable when your coworker openly coughs in your office.

Many people are immunocompromised. This is not only due to autoimmune disease treatment; it can also result from genetics, an organ transplant, cancer treatment, malnutrition, and age, among other cause. Millions of people can be killed by diseases that functioning immune systems would easily fight off. To protect themselves from stray germs, doctors advise many immunocompromised patients to wear face masks when in public, and so I tried.

It was easy, when I was able-bodied, to believe that I would do anything necessary to keep myself alive and healthy. The privilege of the well is to believe they know what it’s like to be sick. After my diagnosis, which required dozens of doctor and hospital visits, innumerable invasive tests, and months of precious time, we started talking treatment. I had already gotten lucky: typically it takes seven years for people with autoimmune diseases to be diagnosed, but the doctors didn’t want to waste time. My lung was failing, my muscles were deteriorating, and I had become emotionally raw in the process.

In addition to the expensive medications I was prescribed, I was also told to go on the “autoimmune diet” (no: gluten, dairy, sugar, alcohol), to attend physical therapy three times a week, do yoga regularly, and to wear a medical mask on public transit. The physical therapy was the easiest to follow through with. Entrenched in capitalism, if I am paying for something I feel like I have to do it. The yoga at home seemed too hard with my increasingly inflexible muscles, the diet depressed me, but worst of all was the idea of wearing a medical mask.

Here in the United States, one does not often see medical masks outside of a medical setting. I knew that other countries had normalized wearing them in public, and I have vivid memories of articles about the SARS scare with large photos of face mask wearers in China plastered under the headlines. Unfortunately, knowledge of masked normalcy in other countries did not soothe my concerns. As a masculine gay Jewish woman in a conservative-leaning Catholic area on the Near South Side of Chicago, I like to try to blend in when possible. A face mask would certainly single me out and I wasn’t sure I was ready to answer strangers’ questions about my body. (Such is the privilege and curse of the invisibly disabled: no one can tell you’re ailing.)

During that first winter I chose to cover my face with scarves, but as the Northern Hemisphere thawed, I knew I had to give in to my doctor’s desires. After a particularly upsetting visit with my specialist team, I took a light green medical mask from the hospital office and pulled the stretchy loops over my ears. What no one tells you about wearing masks (well, very few people seem to talk about it at all, actually) is that they’re annoying as hell. They caused my breath to fog up my glasses, they tickled my cheeks, they made my chin feel moist and hot with breath, and they really clashed with my outfits.

That first day on the bus home from the hospital, the bus driver was especially nice to me, a man offered me his seat, and two old ladies told me they’d pray for me as they exited the vehicle. No one seemed to think that I might be protecting myself from them. They all assumed I must be the one with the infectious disease because I was the one covered from public view.

A few weeks into my resolution to protect myself, I sat down on a full bus next to a young mother and her child. I smiled at the kid before realizing my mouth couldn’t be seen, and then turned my attention to my phone. The child, probably around three, couldn’t stop looking at me, specifically at my mask. I felt my neck grow hot but reminded myself that kids are just curious, and for once no one else was staring. Everything was fine until I felt tiny fingers scrape down my cheek. The child yanked my mask off one ear, shouting the word “monster” from a small mouth.

The mother did nothing. She didn’t apologize, she didn’t look regretful or embarrassed, and she didn’t reprimand her child: she simply shrugged and looked away. I thought about what a teachable moment this could be, the kind words of education I could say to the little one, the patience I would show as a disabled, Jewish lesbian. After all, what has capitalism prepared me for if not to give of myself in every moment? But something inside me cracked that day, pulled aside with the protective mask, and I felt the thick, angry tears long before they slid down my face into the medical fabric. I stumbled off the bus at the next stop and just let myself grieve. I let the masks slide away.

Understanding the intersection of my identities has been a struggle over the last two years. Reading what the Torah has to say about my sexuality or my failing health has led me to find new paths for my faith. Attempting to attend queer events only to have to leave due to smoke (from mood-setting machines or cigarettes) or knowing that one day I won’t be able to make it up the steps to a second-floor setting troubles me. Through it all, I have worn the thick mask of the silent, accommodating queer disabled. Now I am done. Now I will move into the world and make space for myself where it does not yet exist, join the spaces that are welcoming to me, and encourage able-bodied allies to join me. When I wear this mask, know: it’s not me, it’s you.


Al Rosenberg is a chronically ill lesbian in Chicago who reads and writes about Judaism, disability, and video games. Find her on Twitter: @sportsmyballs