‘A lifetime of cystic fibrosis has taught me that viruses and bacteria don’t believe in boundaries’: One woman reflects on being immunosuppressed in an age of coronavirus

NEW YORK — “You know more immune-compromised people than you think, so please take care.” I have been repeating that sentence over the last few weeks to anyone who will listen.

I am just one person whose health status is invisible unless you happen to know. Two years ago, I had a double-lung transplant because of the genetic illness cystic fibrosis, which causes thick, sticky mucus to destroy multiple organs over time, and currently has no cure. Despite this, like many others in similar situations, I get on with life and work hard for what I believe in. This May, I am graduating with an MFA in creative writing from Columbia University.

Wherever you live, there are people in your community who are just like me — people who have compromised immunity for many reasons relating to various illnesses, treatments, medications or procedures.

It’s not our business to know why another person’s immunity is compromised, but it is our duty to do everything we can to protect one another during the COVID-19 pandemic.

I feel lucky that a lifetime of cystic fibrosis has taught me that viruses and bacteria don’t believe in boundaries. They don’t care what you think, what you plan, who you are, where you are from, or what you have or have not done. They just do their thing. That’s why we have to all be in this together. Our shared humanity is what can save us.

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It has been difficult to accept “hunkering down” as the new reality for the next few months. The reality has thrown up memories of the months immediately post-double-lung transplant for so many people I know. That was when only family members could visit, and masks were worn outside always.

Even though we are thriving in our lives now, it is jarring to recall when mass-transit travel was banned for one year and high doses of immunosuppressants — which keep the precious donor organs and revived body working together — meant radically reduced social contact.

The gift of life is the greatest gift a person can be given, and the ultimate legacy a person can leave. As an organ donor, one person can save up to eight people, but the risk of catching infection is so high initially that only 80% of recipients generally survive the first year after transplant.

I survived that first year. I survived that second year, too.

I am so grateful to be alive, and it has been worth every single day of isolation and social distancing. I find it helpful to stand still amid the rush of information around us at the moment. I search for my toes and plant them firmly on the ground. I breathe air in through my nostrils, feel it flow downwards and fill up my lungs, and flow it out again. It helps me remember that we are all connected. We must commit to connection.

And the other thing we must do is demand to be tested. This is how we disinfect paranoia. Every single person must be tested, and there must be a way to be tested routinely and for free. New data suggest that the virus spreads mostly through asymptomatic carriers. This means that several people could feel fine and transfer the virus to a compromised person, who would then get extremely sick.

The lack of access to testing cannot be what kills people. If people do not have access to testing then they cannot relay to another person if they have been exposed.

If we cannot answer that question about our own bodies, through no fault of our own, then we cannot stay safe. We cannot protect our health-care workers. We cannot protect compromised patients who seek care.

Students acted with care this week as they left campus when in-person classes were canceled. When my friend needed someone to mind her bike, I realized she was also leaving. I popped on my mask to pick up the bike, and she wiped it down with disinfectant. This small act of care seemed important.

As I wheeled the bike home I noticed a UPS line wrapped around the block. I noticed faces with masks as they rolled suitcases and climbed into cars, heeding the guidance from the university to leave residence halls, if at all possible, so the virus would not have an opportunity to spread.

I noticed my own desire to restock more medications in case I needed them. I noticed my desire to stay inside. I noticed it was important to be outside, and feel my feet on the ground and the fresh, clear air.

The street was like that moment in a cowboy movie right before a character enters. You know what I mean? The land falls silent, the tumbleweed rolls, there’s a musical trill — and then. Something happens. I gazed up at the endless blue sky, wondering what that was. That same emptiness is still present as the shape of the world shifts rapidly.

All across New York City, behind closed doors and in their homes, administrators work to update students; teachers get to work facilitating online classes; and medical staff, nurses, doctors, cleaners and surgeons are on the front lines like never before. Hospitals may become so overrun with COVID-19 that entering them is impossible for other patients. We must remember there are other viruses and other levels of care that are urgent, and we must hold space for this.

In this unprecedented moment in history we continue onward. I am grateful for this.

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We can make human beings across continents safe by closing mass gatherings, but opening up our hearts and minds. This is the greatest form of love we have ever been called to. It is the invisibility of the threat that sparks the urge to identify with the folly of individual invincibility.

If we consider that everything is almost always falling apart in some way, and that we just choose to see it differently, then we are all in this together and can wash our hands, practice social distancing, and remember kindness and love. This is the time to make great art, reconnect with ideas and friends and loved ones, and remember to be gentle and generous.

The power of ritual, following through on our daily actions, and the constant effort of cleaning our spaces and washing our hands, that will help root us deep in place. Our ability to act and our ability to love are still the ultimate magic that we have. Their ripple effect will last longer than our mortal bodies could ever hope to.

Orla Tinsley, a writer living in New York City, is the author of “Salty Baby: A Memoir.”

This essay is part of a MarketWatch series, ‘Dispatches from the front lines of a pandemic.’

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