Technically we have been living "pandemic life" for 13 years and counting. In 2007 with a tiny new baby in our arms we met and listened to the first pulmonologist we had ever met. This pulmonologist explained what life would be like for our cystic fibrosis baby. He asked us about our habits as a family and then very honestly gave us his advice on how that will change in order to most protect our baby. In addition to the vital daily lung treatments we would give our daughter to keep her body in as healthy condition as possible he also gave us guidance on our time spent outside the home. He recommended we get rid of our dog, stop attending church, avoid crowds at all costs, and stay away from symptomatic people in general. He meant very well, he wanted to start us on the right foot. He wanted us to understand the importance of keeping her environment as healthy as possible.
It was very shocking to us. We did not understand cystic fibrosis then and the very dangerous effects of nickel and dime damage caused by repeated respiratory illness. We had to accept that the lives we had lived as children would be different in many ways than the life we needed to give our child. It was hard to understand what to do. The burden particularly on me as the mother was very heavy. I lived in a great deal of fear and trepidation as I tried to do my best to protect my daughter. My hands would shake in public places, I was terrified to touch anything and I kept hand sanitizer and wipes everywhere. I was always thinking about when I could wash mine or her hands next. My stomach lurched when other people would touch her or ask to hold her, even family. I felt that I was always putting her in danger or potentially exposing her to something that would send her into a tailspin of cystic fibrosis exacerbation.
Soon that pulmonologist left to work at a hospital on the east coast. A new pulmonologist became our daughters caretaker and helped us have a more balanced approach to life. He advised not to keep our daughter in a bubble but to live life as best we could with appropriate caution. He helped us to slowly feel more comfortable in managing cystic fibrosis in our family.
But my hands still shook in public places and I was always worried. Everyday it felt like rolling the dice on her health. I very quickly realized that naturally no one else, outside of my husband, would understand the degree of burden I placed on myself to keep her healthy and how seriously I took it. I felt insane with anxiety many times and shock at other peoples lack of general healthy behaviors in regards to coughing, touching, and washing hands.
Twelve years later I still am always looking sideways and backwards for some exposure I may be missing oftentimes to the point of insanity. Also in the past 12 years I’ve seen my kids spend a few weeks in the hospital, have surgeries, struggle with their health and help them repeatedly overcome low lung function, related weight loss and a myriad of associated physical and mental distress of chronic illness. We’ve also watched as seemingly healthy cystic fibrosis adults and kids around us “catch” just the “wrong bug” and die. Quickly.
Sitting here now with a virus impactful enough to literally break and shut down the entire globe it feels like I’m holding not one but 3 completely vulnerable infants in my arms watching for danger. There are 6 of us in this family. Three with cystic fibrosis and three without. One of us gets sick and the dominos fall for the rest. We are grateful for the people around the world who see this pandemic for what it is and what it means for people who are already struggling with health. What an amazing opportunity to teach people about acting in ways that benefit the whole community and not just heightening the importance of personal convenience.
