Been There, Done That
Images courtesy of Felicia T Perez.
By Felicia T Perez
Wash your hands.
Keep things around you clean and sanitized.
Stay aware.
Stay home.
Stay away from those who are ill or not well.
Stay informed, but not too informed.
Wait for guidance.
Be aware of your mortality and that of those around you.
Show gratitude for medical professionals.
Look for the goodness in the world.
Do something meaningful every day.
Help others.
Ask for help.
Let others help you.
Learn to sit with the unknown.
Be willing to do and take whatever is necessary to stay alive.
Learn to grieve mindfully.
Be okay with grief and change.
Learn to be like water.
For most of us, COVID-19 introduced these ideas and thoughts over this last year. But for far too many of us, these principles were a way of life before March 2020, and will continue even if someday every single person on the planet has access to a “life-saving” vaccination and the COVID-19 pandemic is no more.
Memory issues or “brain fog,” chronic fatigue, muscle aches with chills, and a loss of taste and smell aren’t just for people who become positive with COVID-19. I experience these symptoms in varying degrees every day and have had some of them for decades before March 2020. My brain fog and memory issues are at their worst when I am due to give myself my monthly B-12 injection to deal with my pernicious anemia. Other symptoms are roughest just after those days when I must go to my oncologist’s office for ongoing infusions of chemotherapy.
Since well before COVID-19, I have lived with long-term chronic illnesses that upended the life I thought I knew and replaced it with one that continues to be a little more unrecognizable everyday. The pandemic changed my life both directly and indirectly. Just like everyone else, if I contract the virus, I could die. But unlike everyone else, I could also die if my ongoing community of support contracts it. My life expectancy is only as good as yours. Your life expectancy might not be so clearly connected to mine—until maybe now.
As the late Bill Withers (1938-2020) sang, “Lean on me when you're not strong, and I'll be your friend, I'll help you carry on. For it won't be long till I'm gonna need somebody to lean on.” But what if you’re never strong? What if you always need to lean on someone? And what if the person you lean on needs someone else to lean on—then what?
I was diagnosed with Juvenile Rheumatoid Arthritis at the age of four, and ever since, I have learned that my day-to-day life and its success is integrally connected to that of yours. Can you help me walk to the restroom? Can you help me hold that crayon? Then, at the age of 36, I developed a new chronic illness that causes ongoing eye and brain tumors. The only “cure” for this new ailment is a cancer-fighting drug that must be administered by infusion eight weeks out of the year for as long as I want to live. The reality that I will be on chemo for the rest of my life has cemented my dependency on others. Can you sit with me during my infusions? Can I take off the months of April and October from work? It is clear to me that I need you. But how clear has it been that you need me too?
A year ago, when the “shelter in place” orders first appeared in Nevada, I was at a loss for how I could be of service and help others while also keeping myself safe. What can we do when all feels lost? What’s left when everything feels taken away? Turns out the answer is our voices. Reno’s local community radio station KWNK (97.7FM) had the same idea. They asked me to start collecting local stories about how folks were making it though this time. I bought a “podcast quality” microphone online, found a free sound editing program, and thought of a segment name: Been There, Done That: A Pandemic Survival Podcast. My idea for the title came from my sense that inside of each of us lived a blueprint for our resiliency. It had been true for me; now would it be true for others? That’s what I sought to find out.
From birth we begin to experience a lifetime of moments in which we feel uncertain of what will happen next. From these moments, we learn the “how” of getting by. We learn how to lean on others and how to be leaned on. My first episode aired on March 18, 2020, with this introduction: “Welcome to Been There, Done That. In this show we will be talking to ‘real-life experts’ on how to get through this time filled with unexpected changes, challenges, and feelings of helplessness. And these “experts” are everyday people like you and me. It turns out we may be more prepared for this moment more than we ever would’ve realized. So let’s get started and see what we can relearn.”
I asked everyone I interviewed if this time reminded them of any other previous moment in their lives. What was that moment? And how did they survive it? After my first two interviews it became clear that folks were ready to talk, and that much more would be heard, collected, and shared than my 20 minute radio segment could allow. I transitioned from a short radio segment about local northern Nevada experiences to a long form conversational interview podcast that has followed 30 people across the United States over the first year of the COVID-19 pandemic. The podcast participants, ages 11 to 76, have ranged from community activists to artists, public school teachers to students, new doctors to seasoned patients and caregivers. My interviews have become an archive or collective memoir of what it has meant to experience the pandemic’s first year. I have interviewed these participants every two to three months over the past year, resulting in 5 seasons, over 150 interviews, over 150 hours of content, and thousands of loyal listeners from every continent who have listened to these stories in real time. The podcast has acted as a collector, a mirror, and a roadmap. We are in the final interviews now as we come full circle in documenting how we’ve made it through the last year. Of the 30 participants, two have contracted COVID-19 and more than 10 have had a loved one die from it. More than half came into the pandemic already living with long-term chronic illnesses, and additionally, more than half are the caretakers of others who experience cancer, mental health, or other life-altering chronic illnesses. One participant had a Zoom wedding and several had to host or attend Zoom funerals. Several moved to new homes, or back to old ones, in the midst of the pandemic. Sound familiar?
As the podcast host and listener to all my interviews, I can tell you that life and death, in all their shapes and forms, continued despite the pandemic. Indeed, did anything in our lives truly stop during this time? Police violence didn’t stop. Elections didn’t stop. Discrimination didn’t stop. Domestic violence didn’t stop. Education inequity didn’t stop. Income inequality didn’t stop. Inhumane conditions at the border didn’t stop. And my own chronic illness, disabilities, medical bills, and need for health care access didn’t stop either. I chose, “Been there. Done that” as the name of the podcast because it suggests personal experience or knowledge of a place or topic. I don’t think I could have ever foreseen just how apropos that title would be to frame the stories and narratives of the last year.
As we begin to move through new phases of the pandemic, I hope we won’t forget about those of us who will not be changing or returning to “normal.” For so many of us, isolation and uncertainty about health were already the norm. So please don’t cancel online options for accessing medicine, culture, education, information, recovery, therapy, and connection. Don’t stop washing your hands, wearing a mask, or taking precautions when you or your loved ones are sick. Times of challenge should lead us to much needed change—change that helps us to avoid future struggles. If we rewind the tape and go back to “the way things were” in the future, how certain can we be that the crises of the past year won’t happen again and again?
When it comes to my personal story of health, I play the regret tape, the one that runs “can’t I just go back to the way things were,” all the time. But no matter how many tweaks I make to the recording, I inevitably end up sick and needing to lean on you in some way, shape, or form. What I’ve learned from that process is that my present reality only truly changes for the better when I look to the future instead of the past. What kind of a life do I want to have? How do I want to feel? Who do I need to have in my life in order to thrive? Why don’t I have those things now?
If we want to become prepared for any future moments like the past year, we will need to cultivate relationships of solidarity with ourselves, each other, and the earth. We need to learn how to lean and be leaned on. Consider this a practice run. When these feelings of despair, uncertainty, fear, and hopelessness return, you will know what to do because you have been there and done that.
You can listen to Been There, Done That: A Pandemic Survival Podcast on all major podcast platforms, and can read about the participants at feliciaperez.com/been-there-done-that.
Born and raised in Southern California, Felicia T Perez most recently worked with the Center for Story-based Strategy as their Innovation Director. Prior to that, Felicia taught middle and high school social studies for the Los Angeles Unified School District and was an active union leader and chapter chair for United Teachers of Los Angeles. Felicia is also a published author and designer for several projects, including The 4th Box simulation app, the Picture This and StoryDetours decks, and Game Changer: The Game of Activist Tactics with TESA Collective. Felicia currently resides in Reno, Nevada, where they are a lecturer at the University of Nevada, Reno, in the Gender, Race and Identity Department. You can find them just about anywhere enjoying a good plank when they can.
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