Blog Post Four: The Validation of COVID-19

I’m only a few posts into my blog journey and I realized how negative my sight already feels. Part of that I am allowing myself to feel because living in this world with a chronic illness, it feels very doom and gloom. I have found myself on a daily basis being filled with anger and disgust regarding the world I live in and the people that inhabit said world. Worst of all I find myself absolutely being disgusted that I am an American. I never ever thought I would ever find myself hating this country but I do. While I want to discuss this further and likely will in future blog posts, I desperately need to focus on some positives with the current shit show we are in. Surprisingly there are some current positives. Now whether or not those continue to be positives down the line is yet to be seen. Currently however, there has been a lot of validation that has come with COVID-19.

I am going to take you back six months almost to the date on September 5th 2019. The day where my wife gave me a second chance at life and donated one of her kidneys to me. The entire process of the kidney transplant is filled with so many mixed emotions. As you go through the process, there are so many different specialists that speak with you regarding the new things you need to do. For example, your life revolves around your medication. You need to take them at the same time every day or risk losing the kidney. You are now permanently immunocompromised. With that you need to be extra careful around everything and everyone. Essentially, you need to develop agoraphobia (fear of crowded spaces/public) whilst also being a germophob (Mysophobia, the fear of germs). The reason for this is because they completely take your immune system down to zero post transplant. This is done to hopefully let the kidney start to settle. There are a lot of things done to help keep you safe but, this is a spot where transplant centers across the country differ. A lot of them say you need to wear a mask whenever you are out in public (especially within the first 90 days) while centers like mine said masks don’t do anything. For me I elected to use masks because if all else, it stopped me from touching my face which I was always so horrible at. Regardless, every transplant patient knows that grocery stores, air plans, amusement parks, basically any crowded space is our worst nightmare. 

They also taught me the importance of “herd immunity.” This meant that I was safest around people I have been around. When we meet someone, you inevitably share germs with them. When you do so, your body develops immunities to those germs. So anyone that I was consistently around (Emily, her immediate family, my family, close friends etc were all safe for me to be around immediately post transplant. Anyone else though, I needed to stay away from until my immune-system bounced back a little. This was actually pretty hard in the beginning. What I realized about this entire journey (weight loss, kidney, etc) is its a very isolating experience. I lost most of my friends and even family through this journey. They would completely ghost me. Some of it I understood. For example, our culture rotates around food and alcohol. Take those two things away and you see quickly they don’t stick around as much. I dare you all to test this. Have a friends night but with no food or alcohol, see what happens. But even with this knowledge, people still didn’t understand why I couldn’t just go back to normal. Some of those “friends” that ghosted me all of a sudden sent me messages like “Now that you are cured we need to go get beers.” But that kind of behavior didn’t end there. There was much much more. 

Now I’m used to being stared at, pointed at, talked about behind my back and all that fun jazz. That started in good ole Miamisburg Ohio all throughout school. Little did I know it would go back to that level now. Whenever I did go to the store before COVID-19, I’d be wearing a mask and gloves since I am immunosuppressed. While sometimes it worked in my favor cause people would actively get out of my way. But then there were those people that would make a scene out of it. My favorite were the moms. I would be walking down the isle and a mom and her kids would round the corner and the mom would act as if I was a pedophile after their kids. With me being in ear shot they would say “You stay away from that man, he is dangerous.” Or “You have to stay away form that sick man otherwise you will get what he has.” Then I had that wonderful time where I went to a local health food store and the man was essentially yelling “That guy is what’s wrong with the world, he is blowing all of this way out a proportion.” As this man was saying these things he was around the food bar coughing on the food. Even though I was used to those things it still hurts cause I am not a complete robot. Emily had a rude awakening to my world as she started wearing a mask. At first I know she was super self conscious and would often take the mask off, but as time went on you could see the thicker skin she had to develop. Prior to COVID-19, this was the way. But I must say the positive that has come out of all of this is I feel much more validated. 

People are now understanding what it’s like living my life right now. I was doing all of these things prior to COVID and it sucked. No one understood and many felt I was blowing things out of proportions. Now when Emily does go to the store, she says now most people are wearing masks. Most people are spacing out and not standing on top of each other. More people are staying in doors for the fear of catching this disease. People would find it weird that I would wipe down my groceries when I brought them in, now not so much. Then of course people are understanding the feeling of having to stay home and essentially only interacting with your herd. I generally like people, and I miss some people very much but I can’t be with them. Right now I do feel validated. I can say to people “see, its not so fun doing this and its not nice when people point and say things about you.” My question is how long this will last. My fear is that we will eventually go back to normal (which lets be real, it wasn’t woking right in the first place, we need a new normal) and it will be even worse than it was before. Like it will turn into a witch hunt whenever someone sees someone with a mask on. I hope it doesn’t come to that, but in the United States of hell, I wouldn’t throw anything past them. However I try not to look at that, I want to stay in the moment and soak in the fact that common folks are understanding what us immunocompromised people go through on a daily basis. My message really stays the same, please for the love of GOD just be kind. You don’t know what someone is going through, or what/who they are fighting for.