Life With CF Prepared My Family For COVID-19

How one disease helps train us for another

Long before social distancing became the thing it is today, and long before I knew it had a name, I was practicing it. I was using it, teaching it to my sons to keep them healthy and alive, and becoming a master at it.

My practice isolated me from others. It made them consider me to be strange at the very least and psychosomatic or utterly crazy at the other end of the spectrum. I lost friends, church and community acquaintances, baby sitters, one job, then another, and another.

Back then, my husband said I had no time for him; spent no time with him. If you asked me, I’d say I was confused. Our first son, then the second, was chronically ill. Who was going to take care of them? As time went by, I simply thought my husband was jealous. He was a chronic asthmatic. Yet, he did not understand, and he resented this invisible something that made our sons so ill, so much of the time.

When I took my babies anywhere, I gave people who just wanted to hold them and love them, lectures. Within months of my first son being born, these well-meaning and beautiful souls would each get five minutes of instructions before they could hold him.

Put this cloth on your shoulder. This side against your body. This side against his face and body. Do not put his face anywhere else but on this side of this cloth. Do not give him to anyone else to hold. Do not let others come near him. Do not kiss him. Do not put your face against his. Do not put his face into the small of your neck. Do not rub your nose against his. Do not touch his hands or his feet. Leave those mittens and socks on him, and do not let either touch your face or skin. He will put them in his mouth, and he will be sick by tomorrow. If he drops his toy, do not pick it up, and give it back to him. Put it in this baggie. Seal it. He’ll need a new toy. Take one from this supply here. If the cloth over your shoulder drops, do not shake it out and use it again. Same as toy replacement. Put the fallen one in that baggie and take a new one. Do not feed him. If you think he is hungry, bring him back to me. But if you have to feed him, you need to … (That was another litany of instructions).

Soon, I created lists to give to the desirous holders. One for holding. One for feeding. One for dealing with others who would approach and want to hold him or play with him.

After a while, hardly anyone asked to hold him. Why should they? I was asking them to understand and practice social distancing with a baby they wanted to hold, to touch, to smell, to feel, to love. I was tempting them with a joy they wanted to share. I was teasing them with the thought of giving and receiving affection in the way humans do and then snatching it away with my litany of Do Not directives.

The K-12 school years followed suit. As the boys grew, they learned the art and the need for social distancing. They had allergies and asthma, as well. So they went without party invites, or if they got them, they often turned them down. In elementary school, my sons would often tell the invitees no without bringing the invitations home. They knew they could not eat the same things, could not be near the same things, could not be exposed to the same elements, and knew so many things would make them sick. They were sick of being sick. Sick of being different. Sick of not having friends. Sick of sitting apart. Sick of avoiding people, food, animals, and objects, and sick of crying themselves to sleep at night because everybody else had somebody, but they had nobody. They always had to stay away.

They grieved the emotional and psychological pain and injury of isolation when they had special events and when they did not.

By middle school, sufficiently aware and educated enough to make wise decisions, my sons made their own choices about where and with whom they could spend time. Early on, I felt nervous, but I knew, as difficult as it was for me, I had trained them well and had to trust them now to independently choose the necessary applications of distancing and avoidance in settings outside of home and school.

And they did. The boys had a few mishaps, of course, that resulted in illnesses and, sometimes, hospitalizations. And frustration. And fear. And many of these incidences occurred without the C.F. diagnosis to help us know what exactly we were dealing with.

At home, too, we were always washing, cleaning, and sanitizing. Not to the extent we do with COVID-19, but enough that my sons have vivid memories of their youth of a mom who was “always cleaning.”

Cold and flu seasons meant greater distance from others, protecting the face, and more frequent hand and clothes washing to keep more frequent and greater sickness at bay.

Then, the Cystic Fibrosis diagnosis came. And with it, more powerful nebulizers, special tubes and breathing masks, and physiotherapy devices. And boxes of blue masks and gloves joined the multiple cabinets and bins of prescriptions and medical supplies I kept stocked.

Fast forward to today. My sons are now 24 and 20. One is in New York City and one in Florida. Both places are COVID-19 hotspots, and NYC is the epicenter. The decades of training with an unnamed and then an identified Cystic Fibrosis (C.F.) has kicked into high gear.

What people are still chancing today, my sons and I do not play with. They are in the highrisk category of people with pre-existing health conditions. I can easily compromise their health if I, too, do not take all the necessary precautions. I act as though I have the Coronavirus, and I do not want to give it to them or anyone else. That’s what I’ve been telling people who have asked me how I’m handing COVID-19.

At the same time, my heart and my sons’ hearts break for all the people now suffering in adapting to living in the ways they have had to do their entire lives. As kids, and before and after their diagnoses, they often expressed that they would not wish Cystic Fibrosis on anyone. It is such a lonely and fear-inducing disease. They have even considered giving up spending time with each other. You see, among the realities of C.F. is avoid others. Stay six feet apart from other people with C.F., and six feet apart from anyone who has a cold or flu. There can be no wavering on this. A common cold can be deadly to a C.F. patient.

True, for the first time, they and I feel like everyone else on earth must understand now what it is like to live with Cystic Fibrosis. I remember when they received their diagnoses and how I finally felt that I had a community that understood us. That understood me. Now, the whole world is our community. Humanity understands our every day. Humanity lives our every day.

But for most of humanity, as dangerous and as deadly as COVID-19 is, it will pass. It really will. We may all have to practice social distancing and all the other new and frightful norms for months, or perhaps years. The sudden modifications we have implemented and are adapting to will accelerate and concretize societal evolutionary changes in business, education, and culture. Even when things return to “normal,” normal will have evolved and will look different from what we knew before.

My sons and I, their C.F. compatriots in the U.S. and the world, and you — all of you — all of us, will get better at implementing the new COVID-19 protocols that we now have to live with. The virus is insidious and often invisible in either non-symptomatic carriers, or in the incubation stages of the disease. So we all need to comply with our new global safety protocols. C.F., too, is an invisible disease for the most part. C.F. patients often look normal and healthy, but they are not. And the disease has just given us much more time to practice what all of us now need to do.

Today, an unimaginable population death rate has become everyone’s reality. However, most COVID-19 patients will get better as the virus runs its course. As a global community, we will survive. We will rise and survive. Why? Because that is what we do as a species. That is what we do, no matter how much time we are given to learn and practice before we are ushered onto the stage of life and living.

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In pursuit of simplicity and meaning. Writing sometimes about my journey. Mom of young adults with Cystic Fibrosis @AbundantBreath

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