in her workshop “diction and (dis)ableism”, joselia rebekah hughes (@joselia_pdf) said something that continues to ring in my mind almost daily.
“allow yourself to grieve. we have all survived our own pandemics that no one saw”
last march, the mainstream suddenly knew what “immunocompromised” meant. it was on TV, coming out of politicians mouths. it was being passed around like a whisper “you only die if you’re old or compromised.” like a secret key that meant you would be fine. but for me, an immunocompromised person in my 20s, it was like a target on my forehead for an invisible assassin.
people who had stopped inviting me out were suddenly reaching out to see if i needed anything. people who hadn’t really understood the severity of my illness were suddenly faced with the daily news talking about how my life was at risk.
the sudden global awareness about something so intimate in my body was overwhelming. in some ways this felt good. i was like WOW now i don’t have to ramble about T-Cells to people, they kind of get it! people CARE!
this feeling evaporated as the spring came. people now knew the risk, and chose not to care. all the years i’ve been willfully excluded or left behind because of my illness, but this year people were doing it knowing full well that my literal life was at risk of ending.
last march i was living in a dense neighbourhood that quickly became the seventh worst area in the world for the pandemic. i had already been on medical leave from my job for several months due to an autoimmune flare. i was having intense environmental sensitivities from tap water with high-risk of lead poisoning that caused my face and eyes to painfully swell, so was going to the store daily to pick up heavy bottles of drinking water. not great for someone with a spinal disease. not great when the pandemic hit.
as we near the second march of the pandemic, i am now relatively safe. i moved across the country because the provincial government denied funding my medication, but the sudden change has brought me to a better situation. still, i sit with a dull ache, unsure of how to process the last year or the last decade.
as someone on heavy immunosuppressants, i’ve fallen ill for months at a time with a lung infection from a common cold. for years, i’ve been washing my hands after the grocery store. disinfecting my hands after shaking hands with new people. standing back from people’s spit as they talk. been seen as rude for not sharing food. my ability to stay functional relied on learning how to become a germaphobe, and i did so while trying to seem as ‘normal’ as possible. i was an incognito immuno-spy.
two years ago, i’d have to ramble on in and out of intimate details for anyone to be able to accommodate me on the most basic level. now that people know what immunocompromised means, it’s easier. i say two words and people are like OK FOR SURE.
except of course, for the politicians. time and time again politicians have made choices that accept rising death tolls of disabled, elderly and marginalized people as collateral. they balance the economy and the spread of the virus like they balance the books. numbers in, numbers out. death tolls vs economy. this is not surprising since this is how governing bodies love to (de)value disabled people. our imagined fiscal worth.
my immunosuppressant medication costs nearly 30K a year, and is covered by the government for those in low-income brackets because the drug has been proven to get people back to work, and therefore back to paying taxes. if i am not currently employed at any given time, it puts my access to medication at risk. my medication was denied twice in the last two years because i had not improved enough on the one-to-ten pain scale (i must ‘improve’ on the pain scale by 30% every six months to be eligible!) my funding was therefore cut off and i was forced to switch medication, which put my body into shock and caused me to miss several job opportunities. for anyone who has not done a pain scale, it is literally “on a scale of 1 to 10, how bad is your pain.” imagine trying to summarize your experience into 1 to 10 while on literal fire. this is just one part of my kafkaesque immunocompromised existence.
the ways in which we navigated and survive these systems depends on who we are, where we are, and what we have or do not have access to. there are so many times i see myself fall through the cracks of the system. there are so many times something or someone catches me from slipping through. there are so many times i make it through because of privilege i have that others do not.
the weight of this past year is those who did not make it. young people, old people, moms, dads, kids, frontline workers. immunocompromised people. cancer survivors. trauma survivors. those who had already been fighting for their lives. lives that were as full, rich and complex as yours. lives that held as much magic and potential as all of ours.
this year is an insurmountable loss.
take care of your grief <3