I knew it was truly serious when our clients started calling in February. I was sitting at my desk like any ordinary day, when Cayla on our staff stopped by my desk. “Liz, clients are calling and telling me not to travel for work due to this virus.” Our company, Affinity Strategies, manages nonprofit health care professional associations. One of our association presidents, an emergency room pharmacist at the University of Utah, had called to share that with my employees that they should not travel in order to protect me and my immune system.
The thought of suspending work travel for all of my employees and their client spring meetings was overwhelming. I called the client to thank her for her concern, and she shared that while information was coming in rapidly, it was already clear that travel and large gatherings were no longer safe. At that moment, I knew that not only was life going to change for our office, my employees, and our world, but that my health was directly at risk.
When I was 13, I was diagnosed with end-stage renal disease. The disease progressed very quickly, and within a year I had my kidneys removed, was dialyzed, and had a kidney transplant. 35 years and three kidney transplants later, I am thriving … sort of. Unfortunately, my current kidney has chronic rejection, which makes me more vulnerable to many external factors. I am on the maximum levels of oral immunosuppression, as well as a cocktail of other medications to ensure my health stays stable as long as possible. That makes me particularly vulnerable.
Over the last two months, I have experienced so many emotions. When it really dawned on me how this pandemic would affect me differently than what I call “normal, healthy people,” the words “survival of the fittest” immediately came to mind and continue to resonate. Most people understand that the elderly are at risk, but what about the mysterious, often “invisible” patients with underlying medical conditions? Who are they, and what do they have to say? Does anyone really know who those people are and what makes them more at risk? How is one underlying condition worse than another, and how do we as patients with chronic medical illnesses proceed?
For the first time in my life, I feel like my medical issues are marginalizing me, making me an afterthought. People like me living and thriving with chronic illness look and act like normal, healthy people, except we are juggling a multitude of medications, symptoms, physical abilities and inabilities, lab results, and doctor phone calls and emails. It can be exhausting, but there is no option but to be diligent when you are fortunate enough to survive real medical problems.
For those of us who are living, thriving, and overcoming our medical conditions, sadness and fear often strike. Many of us have cheated death so many times—faced it in ambulances, hospital rooms, our homes, on dialysis machines, waiting for transplants, or waiting for the next lifesaving treatment. The fear of losing the battle to something that could be avoided with a vaccine and proper societal support is very real, and very scary.
This feeling of being more physically vulnerable has always been front and center for people like me. It’s a way of life where you compromise and build your life around those compromises.
It is not quite as bad as a giant elephant in the room, but it’s an ever-present force to be managed carefully. But how can I work around COVID-19 when our country is opening its doors while pandemic levels continue to grow? I cannot help but feel nervous, sad, and let down. I am blessed to own my own company and work from home. So many in my situation have lost their jobs or are forced to be on the front lines, whether they work in health care, at a grocery store or for an airline.
For the first time in a long while I wish I could hop on an airplane, even for a work trip! I am an explorer at heart, so staying home does not come naturally. Today, my husband and I were supposed to be leaving on an international vacation. When will that kind of travel be reasonable for someone with chronic renal disease and 30% kidney function? Those factors haven’t held me back in the last few years while I have been managing chronic renal disease. But with COVID, there is no choice but to continue to live life in my home, yard, and limited areas outside. With the recent Supreme Court ruling in Wisconsin, I don’t even feel safe traveling back to my beloved home to visit my family.
I am also excited for our world to move forward, albeit we all know it will look different. We desperately need a vaccine. But that will take time. In the meantime, we must care for our most vulnerable, and that includes people like me. This is not a political issue—it’s a medical issue. Everyone must exercise care right now, but I pray that the majority of our country does not forget about those of us marginalized during these times, including those of us who need a little more help to be strong enough to re-enter the world despite our vulnerabilities.
When the history of this era is written, will American rise to the challenge like the Greatest Generation did to win World War II? I know today’s Rosie the Riveters are our nurses, grocery store clerks, and those delivering packages to our homes. But will we have our versions of victory gardens and war bonds? All that is required is to be patient, stay at home as much as possible, and use precautions like masks if you have to venture out. Are Americans up to that task?
I’m not sure of the answer, except to know that my life and millions of others depend on it.