From one essential worker to another.
My name is Rick Nash, and I am lucky. Lucky to have survived one epidemic, and to have devoted my life to eliminating it. I was diagnosed at age 12, and it was trough my diagnosis that my family learned of the source, my mom. We were diagnosed with Hepatitis C. At the time, there was no cure, the treatments were hell and had a low chance of working. The disease was slow-moving, but my mother’s first treatment happened as I was navigating middle school. She would ultimately suffer through three of the roughest treatments to rid herself of Hep C. And it was her sincerest hope that these treatments would also work for me. This was not the case. I would go into End-Stage Liver Disease and spend a year nearly dying every day. A liver transplant, six treatments, and over 40 hospitalizations would ultimately allow me to survive.
Those six years I spent in End-Stage were rough for me, but also for her. The guilt in my mother’s eyes only grew when in 2011, she was cured, and the same treatment nearly killed me, causing me to hemorrhage blood from my esophagus. I would not be cured until 2017, after my transplant, as I had become too sick to treat. It wasn’t until then I truly saw the stress begin to leave my family. The guilt had taken its toll on our relationship, making it hard to be around each other during times in our lives. Which is a large reason we all must collectively do what we can to follow mitigation best practices put forth by the CDC and WHO, the keys being Hand Washing, Social Distancing and Personal Protective Equipment. No one wants to un/knowingly give this to anyone else.
Hold up. Before this gets too emotional. What does this have to do with COVID-19 and essential workers?
(Let’s drop some resources here because a handful of essential workers are going without because their employers aren’t providing PPE: How to make a face mask, How to make a different face mask, and what materials you should use and how best to sanitize or reuse a mask. Layers help a mask filter well. Also handwashing should include “good Hygiene” which refers to trim nails, minimal excess hair, regular bathing, and washing hands before/after bathroom, food handling, entering the home at the minimum.)
Fear and stigma regarding viruses are always an issue. Whether someone has COVID-19, Hepatitis C, Hepatitis B, and/or HIV, they understand this feeling. The notion that should I become infected and pass it on, how will I internalize and understand the guilt. The fear that when we bring people closer, that we might infect or harm them in some way, when all that’s sought is love can be exceptionally lonely. And the societal stigma, that because of this infection, a person becomes unpalatable because they could transmit it only layers that guilt, reinforcing it.
While Coronavirus is beginning to be understood regarding how it moves about, we know a good deal about the other viruses, we have treatments to control and contain them. People can live somewhat average lives due to treatments like PrEP, and DAAs like Sovaldi or Mavyret. The stigma and guilt aren’t different, they may scale a bit, but they’re not new to us. So it is with a heavy heart I welcome those who recover and survive COVID-19 into the fold of epidemic survivors. In the Hepatitis C community, we would be nowhere without the work, blood, sweat, and tears of the HIV/AIDS movements in the 80s and 90s. Each of us must build up the other, to give back what we have learned through decades (those of us lucky enough to still be here) of hardship, silent or slow government responses, and a society which is slowly learning to accept people with disabilities, let alone those of us with disabilities who they view as a threat.
Threatened, is what we see when we see stigma. We see someone who feels threatened by our very presence. Fear is powerful, but it can be quelled with truth, integrity, and connecting with the human underneath the veil.
The title of this isn’t just to reference service and grocery workers, because as an essential worker, I have the benefit of being able to work from home as I’m immunosuppressed and work in pharma. The organization I work for is providing space for the development of a device which reduces the likelihood of the cytokine storm and the likelihood of ARDS/the need for a ventilator.
The phrase “How can I help you today?” is significant, it was used in Wal-Mart’s greeter program, the largest single program which employed workers with disabilities. The phrase was used because it humanized the greeters and engaged people.
To walk out of this chaos together, we must remember that a community is only as healthy as its most unhealthy person, and ask not only one another, but ourselves: How can I help you today?