Guilt as a High-Risk Person

I have experienced some form of guilt my entire life and that feeling for the most part comes from the fact that I’m still alive and my sister is not. Wendy only lived sixteen days thanks to the disease we share. Even to this day I wonder how things would have turned out differently if she had survived. Would my parents still try to have a second child through natural birth? Would Emily have been adopted by another family? What would Wendy have done on this earth? I still feel some form of guilt for being alive while many of my peers growing up with cystic fibrosis are no longer here. I also felt a level of culpability for being a liability to so many while in college.  

“We can’t go out till Andy does his therapy.” 

“Andy forgot his pills so we have to go back.” 

“Andy is not feeling well so we can’t go out.” 

Circumstances like these led me to feeling alienated while in college and even quarantining myself in my room for days at a time so I didn’t have to be anyone else’s problem. Those were my pity party days. I eventually was able to manage that guilt and became stronger because of it. 

I think all of us at some point in our lives have felt some level of guilt for something that has happened to us. For me, most recently, my guilt has been twofold. The first is feeling like a hypocrite. I tell so many families of children with a chronic illness not to let their child live in a bubble because of their disease and here I am living in a bubble at home while the pandemic is going on. Who am I to tell people to go out and live their lives? I do however know that I am doing the right thing by being cautious and I am trying to set a good example but how can I go around when the pandemic is over and say “You have to live your life?” Am I really practicing what I preach?    

The second dose of guilt is the worst of the two. It’s the feeling of holding my family back. I’m a high-risk patient. I have cystic fibrosis (CF) meaning that I have a very serious lung disease and in Georgia, the most aggressive state when it comes to re-opening the economy, I am still being told by my governor to stay home because of my health. Being told not to take risks in Georgia is like going to Disney World but not being allowed to visit any of the amusement parks. Everyone else is going. Why can’t we? Or at least that’s how it feels to me. 

As my family has now surpassed the 12-week-mark of quarantine, I oftentimes feel suffocated by guilt. While everyone has been told to social distance, my wife and children have the added pressure that if they slip up with the wrong person/people, they could potentially put me at a much greater health risk. I used to think playing Final Jeopardy was a lot of pressure. 

Things were supposed to be easier for us. I started a CF modulator Trikafta six months ago which was brought to the market by Vertex Pharmaceuticals and my lung function ballooned 15 points. I was taking deep breaths for maybe the first time in my life. I was starting to feel like everyone else. Now, here I am back feeling like that young man in college who could not open his door because he was embarrassed about having cystic fibrosis and the effect the disease had on his relationships with his peers. 

Everyday I turn on the television and watch as hundreds of thousands of people protest around the world. Every time I open my social media pages, I see kids playing sports with their friends, families getting together to enjoy the summer and random people acting as if there was no such thing as COVID-19. It’s not that I blame them. If I did not have cystic fibrosis, we might be doing the same things. Am I jealous? I prefer the term “envious” only because it sounds a little better. Of course, I am jealous. I am not jealous because I want to do all these things. I am jealous because I want my wife and children to be able to live like this too. I do not want to have to always make decisions on what puts the least amount of risk on me. I feel terrible about it. The thing is that Andrea and the kids have been amazing. “Amazing” may not even be a strong enough word. Perhaps “unbelievable!” 

Yes, we all go through those “Woe is me?” moments. Who doesn’t? Avery and Ethan though understand that we cannot be like most families right now. Andrea has been incredible helping us to calculate our risks and educating everyone as to what works and what does not work. Still I know that right now every risk whether big or small will come down to my comfortable level and that is a lot of pressure.     

I blogged recently about having to take risks. The thing is that our risks are a lot less substantial than most and I would venture to guess that the decisions to even take the smallest risks are a lot more thought out than for most families. 

The purpose for this post is to let high-risk people and their families know that you are not alone. It’s difficult not to feel left behind right now. Just know that my family empathizes with you and that we will persevere. I knew the day would come when a majority of my friends and family would begin the slow process of returning to normal. I was just selfishly hoping that a vaccine would be available around that time so that we would not be too far behind. 

The thing is that not every person is going out right now and worrying less about social distancing. There are tons of families who feel “stuck” at home while all of this is going on and feel somewhat left behind. There are also families who are not at high risk and do not have to be stuck but they are still obeying all the CDC guidelines and even wearing masks when protesting. I want to say thank you to them. You make the lives of those of us who are high risk much easier. I support those who are protesting to make our world better but I’m even more supportive of the individual protesters who are protecting me and the entire high-risk community by wearing some form of mouth and nose covering and peacefully letting their voices be heard. 

There will eventually be a vaccine and this pandemic will someday be a part of the history books. I will go back to traveling and speaking, and my family will go back to having the same freedoms as others. I know that. The hardest part is to manage the culpability I experience while COVID-19 is still an issue and figuring out how to stay strong for those in the CF community and especially my loved ones. I want to make sure they never have to experience the sort of guilt that consumes me every waking hour. 

Stay strong everyone. We will get through these unusual times. 

And I will once again find a way to manage my guilt and turn it into something positive. 

Live your dreams and love your life.   

Best Wishes, 
Andy