Being that it’s CF awareness month, I thought I would explain how people with CF have been dealing with a pandemic their entire lives. People with cystic fibrosis like myself are recommended not to get within six feet of other CF patients due to bacterial cross-contamination. There are certain bacteria like pseudomonas aeruginosa that can stay in a CF patient’s lungs. If a “normal” person contracted this bacteria, it would not be a big deal. If a person with CF has the bacteria, it can damage his or her lungs significantly. Once pseudomonas is established in the airways, it can be difficult to eliminate. The bacteria can be spread by touching such as shaking hands or kissing and thrives in moist environments such as bathrooms, hot tubs and sinks so it’s very important for us to wash our hands and not touch our face when using these things. Sounds familiar, huh? This is one of the reasons I have always carried hand sanitizer with me even before the pandemic.
Obviously it’s different if siblings or parents and children both have the disease. That’s one of those situations where you try to just make sure to separate each person’s equipment (nebulizer cups mostly) and keep an eye out when one of them is having an exacerbation. So those of us with CF have been living with social distancing our whole lives. Many of you may have read the book or seen the movie Five Feet Apart. It’s the story of two patients who fall in love and both have cystic fibrosis. The movie is about how they handle social distancing.
I know what you are probably saying. There are only 30,000 people in the United States with cystic fibrosis. The odds that you’ll see another person with cystic fibrosis are .00009%. When I go into my CF clinic, the odds change. When I go to a CF-related event, the odds change. When I give a CF-related speech, the odds change. I’m not saying that I have been in a situation like this one when social distancing is the norm around everyone. I haven’t. I do know that because of cystic fibrosis I have always been cognizant to stay more than six feet away from anyone who was coughing, sneezing or who just didn’t look well. My dad used to force me to go home when we worked together when anyone in the office was under the weather. It made me feel alienated though I understood why he did it. I always wear masks when Andrea and I take the kids to their pediatrician and I always wear them when I fly despite all of the interesting looks I get. Social distancing is never easy but when it comes down to the choice of wearing a mask or wearing a ventilator, I’ll gladly choose the former.
The picture I’ve included may look like any other picture of three people. It isn’t. This is one of me and my Facebook friend Kari Rose when I spoke in Portland, Oregon in 2015. We both wanted a picture together but since Kari and I both have CF we had to be careful. She is on one side and I am on the other with one of Kari’s family members who doesn’t have CF in between us. This is not the first picture of its kind. I did some research and saw an article in which two young men were on the University of Maryland Men’s Lacrosse team. One worked for the team and the other played on it. Though they were on the same team, neither ever got within six feet of each other. Somewhat remarkable. It didn’t seem to bother the team though as they won the NCAA Division I Lacrosse National Championship.
Social distancing has been a big topic in the world lately and I can tell you that I have done many speeches with other people with CF in the room over the years and we have stayed six feet away from each other and often worn masks. It can be a nuisance but for us it’s more than that. It’s life or death.
Just remember that people who have difficulty breathing like me wear masks every day to protect ourselves and those around us who may have a lung disease, be immuno-comprised or who are getting up there in age. All we are asking is that you return the favor to protect us too.
Live your dreams and love your life.
#socialdistancing
#cfawareness
#cfawarenessmonth
#cysticfibrosis