Dani Sellmar

What has your experience during the COVID-19 pandemic been like?

We have a son who has a syndrome that causes inflammation of the brain when he gets viruses. We knew from the beginning that because of that and other health conditions he would be susceptible to poor outcomes if he got Covid. We took care to protect and so did everyone around us, until they simply didn’t anymore. The first was the vax and relax which ended up with some of our family getting Covid from our child who was going to CU. Despite testing they came home positive after a roommate stopped precautions. The second was the great unmasking when people stopped masking but weren’t always honest about it. We caught covid from and friend. After that we decided to become more vigilant with our precautions as we started to realize we were being abandoned. We had managed to keep our vulnerable son from being infected and were determined to keep it that way. A couple weeks after that infection, I started feeling off. My heart rate would sky rocket and the fatigue I felt was like nothing I had ever experienced. I was unable to recall conversations I had just previously had. Writing anything  became difficult and a simple email would take hours to compose. Hair loss, headaches, pain through my body became common. Small efforts took all my energy leaving me to have to sit halfway from my car to the front door, less than a 20ft walk. I knew there was something wrong but it took many doctors and a lot of gaslighting to find a cardiologist who diagnosed me with PASC (Long Covid). I am still on the waitlist for the clinic at UC health almost a year later. For my son previously healthy son who I infected things weren’t apparent at first. He is young and could not express what he was feeling. It started for him noticing he was unable to keep up with other kids and odd eye infections with no known cause. He then developed rashes that doctors kept telling us were viral, he hadn’t had a virus in years due to our masking practices. The only virus that could be causing it was Covid. The rashes went from mild to severe within a matter of months and he has painful rashes that peel off every month. His lab work recently came back with some unsettling results. Unfortunately, neither one of us have found any successful treatment. As time has gone on we have been abandoned and ghosted by family and friends. They either don’t believe there is anything wrong or they don’t believe it’s from Covid. We are so lucky to have found a community of people who understand the risks of COVID but existing in this society of people who have decided to ignore or deny harms from COVID has been really difficult. We are often harassed by the public and treated poorly by those around us. The collective trauma has caused people to become hostile to masks and any other precautions to avoid infection. One way masking is good but being the only people masked is always a risk. We have had to completely change our lives so everyone else could go back to living like it’s 2019. We are still watching people we care for become ill, disabled and die due to COVID. The denial is rampant and being the few that are aware has been really difficult.

What did you learn during the pandemic?

That people are only in this life for themselves. I have learned that so many people honestly do not care what happens to anyone else. Since becoming disabled I am learning how ableist our society is and how disabled people are treated and left to fight a truly unfair world. I learned that those who I thought cared for me only did so until I became disposable. I have also learned that community care and inclusivity only happens when it suits people, not when it suits those who need it. People honestly believe that anyone who is disabled or has underlying conditions deserves to die from COVID. We have also become a society that no longer cares about death or those who die. I’ve learned that the economy and capitalism will always win over people’s lives.

Is there anything you hope other people know or learn from this time?

I really wish they knew that almost every person who has died from COVID, had complications from COVID, got Long COVID, thought it wouldn’t happen to them. Everyone is susceptible to Covid and the damage it does. It’s not becoming more mild. Waves are getting bigger not smaller. It’s not seasonal. It’s not mild. It’s airborne. Deaths are still high we just aren’t counting them. I wish people knew that what they don’t know can hurt them and refusing to read the truth about Covid won’t save them. Just because you don’t want something to be true doesn’t make it any less true. Cognitive dissonance and the denial is doing nothing but killing us. I really want people to know that we live the same lives that we did before and we would live them even better if people would just accept that some people are going to continue to protect ourselves and the way that makes them feel is their problem. We are not hurting anyone by protecting ourselves and ultimately them.