What cancer taught me about how we should be living right now, under the threat of COVID-19.
In 2013, when I was a senior at UC Davis, my mother was diagnosed with stage IV non-small cell lung cancer. I wish I could say this was a shock to me at the time, but it wasn’t. Not because I was expecting it (she wasn’t a smoker), nor because it was common amongst people I knew, but rather because my involuntary response to this information was one of paralyzing denial. My mother, the most health-conscious person I knew from ages zero to present day, who had just overcome one horrific health episode involving UCSF gastroenterology experts “out of town for the weekend” and a perforated colon during a reluctant colonoscopy, had lung cancer? I didn’t buy it. If she does have it, which she probably hardly even does, she’ll come out of it. She’s strong. We’re a strong family. We’ll get the best medical support in the world and find some way to pay for it. This is gonna be a tough year. That’s what I can remember thinking at the time. Sometimes I wonder if it was my selfishness that caused me to have such a non-reaction. That may be part of the answer, but my mother’s brave head-on attack mode combined with calm confidence is what more likely caused me to brush it off initially. At 21, I was still a child. I had grown up in some ways, but she was still my mom. She knew the right answers about diet, professors, and relationships. If she says we’re going to get through this we’re going to get through this. That was how I approached learning that my mother was diagnosed with cancer.
Well, as the months turned into a year, she did get through it. She lost some hair, found some new cuts that made her look adorable, found some stylish new scarves and hats, but over-all she looked healthy and vibrant through most of the process. I graduated from college and moved to Los Angeles. We would speak on the phone almost every day. I would text her about every little thing. My mom was my 24/7 therapist. I spoke to her when I was happy, reached out when I was sad, and when I struggled. She went on being my mom and I went along being her son for a couple more years. That was until one day I arrived home from Los Angeles for a visit at Christmas. I opened the door and she was frighteningly skinny. Always petite, but upon seeing her at 5’3” and what could not have been more than 75 lbs., I finally internalized that something was wrong. She had that warm smile she always did and could hug me just as effectively as before, but my brain finally received the signal that something was wrong. Something was very, very wrong.
From then on, her condition got worse. The specific term for what was causing such a strong reaction in me is known as cachexia. That’s the extreme weight loss and muscle wasting that cancer patients often suffer. I could elaborate on where things went from there, and the episode of the undiagnosed blood clot that caused her great pain, how we briefly thought we beat the cachexia then didn’t, then lost our family home of 35 years in the middle of all of it, but the point is it took two years after my mother’s cancer diagnosis for me to finally take it seriously. From then on, it was frequent trips back and forth from LA to Taylorsville, then from LA to Portola, flights to MD Anderson in Houston, then LA to Reno where the final battle took place.
Slowly and steadily, in more pronounced ways each visit, her condition was worsening, as was her mind. Finally I started to take this thing seriously and cherish my time with her, but I had no guidance on what was important besides my intuition. There were several long car rides, alone with my mom when I asked her how she met my dad, about her one lone drug experience with magic mushrooms as a teenager, about moving from the Bay Area to Genesee Valley. Finally I got to really know my mom, in a way that went further than what I could just infer and absorb by knowing her for 25 years. But I still feel as if it wasn’t enough. I waited too long. No one is satisfied in losing a loved one, especially one’s own mom, but I feel an enormous amount of regret for how I failed to act in meaningful ways when I knew what was coming; I just couldn’t bear to accept it at first. I have other regrets and scenarios I still play out in my head, of how if I had done this one thing differently it maybe could have saved her, or given her a few years extra. All that may be wishful thinking, but one thing I know for a fact I could have changed was how I spent those initial two years.
There are many ways to die and cancer is just one of them. When I was suffering through the emotional anguish I felt constantly during my mother’s long battle with cancer, I learned why that disease is so particularly heartbreaking. Cancer, in general, is not a death sentence for everyone. There are so many different types of it, but we commonly loop all of them in together when we think about it. If a neighbor’s mom beat breast cancer, we might go on thinking there is hope that Dad will beat prostate cancer. Even if we are fully aware of the drastic difference in the odds, there might always be that sliver of hope. We’ll be strung along and look for any good sign and it will be the most optimistic we’ve felt in months, only to fall ten times harder back to reality when we realize that was just wishful thinking. Repeat this process for years. It’s exhausting and it will break your spirit. Cancer is a band aid with superglue adhesive that covers your entire body, getting pulled off millimeter by millimeter over the course of months and years. My god, wouldn’t it be better just to pull the whole damn thing off? Sadly, in part to the horrific and sudden loss of a friend’s parent due to murder a year prior, I knew that this was not preferable either. Death is bad, whether it’s a long drawn out process that makes the healing take just as long, or if it’s sudden and unexpected.
Now, how does this relate back to COVID-19 and the current health crisis? Throwing aside the economic fallout and all the ways our world will have changed when we come out of this, the threat of COVID-19 to our mortality has a bit in common with these other types of death. Cancer is a diagnosis, and we know that the older we get, the more likely we are to develop it. Murder is sudden, and the odds are slim of it affecting us, but none of us is immune to it regardless of age or health. We are in a strange place right now, living under the threat of coronavirus. The vast majority of us who do not directly know anyone who has been affected just yet are simultaneously terrified of it and not taking it seriously. I can at least say as much about myself. I want my dad to be safe, am taking precautions to self-isolate, wash my hands incessantly, but am I really living like there is a greater-than-previously-expected imminent threat upon mine and my loved ones’ lives? I spend most my days in self-isolation keeping my house clean, reading, watching some TV, and spending hours upon hours on Twitter and Instagram. I’ve talked on the phone with some close friends and family members, written a few things, dug up old poems, and every night at 5 PM I hit my liquor cabinet like it’s happy hour. I would predict that I am not unique in my behavior, but I would submit to you that we are all making a huge error by living this way.
I live alone during this crisis. I wish I could be isolated with family, but it’s not really possible, due to reasons with which I will choose not to bore you. Many Americans and other citizens of the world, especially those in the healthcare profession, are making extremely difficult and selfless choices to separate from family right now so that they can better care for yours and mine without the risk of spreading the virus to patients from asymptomatic children. Many have consciously and purposefully separated themselves from elderly or immune-compromised parents. There are millions of people making smart and difficult choices for the good of loved ones and strangers alike. All actions are precautionary and wise, but if I could impress one thing upon you from the little life experience I have, it would be to take these days, weeks, or months and treat them as if you are dying with a reasonable expectation of pulling through, and your loved ones are also dying with a reasonable expectation that they might pull through.
I have never been diagnosed with a terminal illness (well, besides a case of “terminal appendicitis” — exact words from my doctor at the time), so I can’t speak much for how to live for one’s self in such a time. I can say with some reasonable amount of confidence that spending every night streaming Love is Blind on Netflix, and downing bottles of cheap red wine is probably not how we want to be spending our prospective last days as fully healthy and capable human beings. What I’m doing is not much better- streaming episodes I can’t remember if I watched of Better Call Saul while drinking bougie mezcal and gin, and holding 14 different Instagram direct message conversations at once. I imagine the best way to spend my days, if thinking only for myself, will be by writing, being outside as much as is responsible and wise, cooking meals that are both good for my health and good for my soul, and reading my favorite works of Paine, Hamilton, and Madison. Where I do feel as though I have some ground on which to stand is in how to live for those who you love, who may not be here as the cases of this virus go up and up and up.
The thing I miss most that I lost with the passing of my mom is the sound of her voice. I cherish the memories of my mom, and I can get lost in a photo of her, but I cannot overstate the emotional and evolutionary trigger that a mother’s voice provides. The first voice I heard, the one that kept me safe and accountable for 26 years, and one day was gone. If you have a good relationship with your parents, record their voice, especially in conversation with yourself. If you or they can stand it, I would say record an entire conversation series with them. Pick apart their history, how they met your other parent, what they were like as children, what their dreams were and how they thought of the world when they were only your age, or even just the events of the day. It doesn’t have to be because they are dying or might die, but because that’s interesting information that you surely want to know. Not entirely on purpose or with this in mind, but shortly after my mother’s passing I recorded a podcast episode with my dad. He was indeed an expert on the subject I was covering and while he criticized my unwitted liberal use of the words, “like” and “um,” it resulted in a really great conversation. I cannot tell you how happy I am to have made that recording. My dad is in good health right now, but he is aging and eventually, we all go. So record your parents, and why not find a way to keep conversations with good friends while you’re at it. We have the technology. Call a good friend and talk about the best memories you have with them, squash the beef, and tell them how much they mean to you. Get to know your loved ones and preserve what you can’t get back.
I’m no wiser than any of you. I’m trying to make sense of all of this in real time too. What I do know is that life can change quickly, and a pleasant day can suddenly turn into the worst day of your life. We all know there is a reasonable threat with this virus. While some may downplay what havoc it may wreak, my position is that it will be incredibly unwise to take it lightly even if you are taking all state-mandated precautions. I haven’t heard my mom’s voice in 3 and a half years. In my phone, in the oldest of my saved mailboxes, there sit three messages from her. I miss her so much and I can scarcely put into words how much I miss her voice, but I am terrified of those messages. I simultaneously want to hear them more than anything in the world, but know it will bring everything to the surface, which I’ve been able to emotionally bury until now. One day I’ll work up the courage. Until then, I can tell you that my mom’s name was Carol Sandra Johns (her name was Delys at birth, but my grandmother, Harriet changed it because it was too difficult for the other kids to say). She loved tulips, weeping willows (she had one in Burlingame), oatmeal raisin cookies, San Francisco Giants baseball, and Stanford football. Her voice was strong, matter of fact, pleasant, and caring. Now go wash your hands and call your mom.