“We’re going to lose the entire year,” I say to my husband as I unload the dishes. It’s a chore I’ve grown to look forward to since we stopped eating out in mid March, after Governor Cuomo put the state of New York on pause. Since then, I’ve become fixated on making sure the dishes and laundry are always done.
“Yeah,” he agrees, reaching past me to get a clean plate from the ones I am neatly stacking beside the sink.
Neither of us are particularly distressed by my observation. It is simply an acknowledgement of what’s becoming more obvious as the days and weeks pass — we’re only at the beginning of a long year of disruption and waiting because of the virus. This global pandemic is so unprecedented and life altering that we’re not sure what the world will look like in twelve months, or if we’ll both survive to see the other side of it.
I contemplate what it means to lose a year as we putter around our small kitchen. The feeling of uncertainty, the loss of control, and the grudging acknowledgement that our life is profoundly changed is so familiar, it’s almost comforting. I’ve already accepted that 2020 won’t resemble any kind of normalcy again. I know all the signs. After all, this isn’t the first year I’ve lost.
My daughter, Ana, was diagnosed with cancer in September of 2012. She was due to start sixth grade five days before I brought her to a local emergency clinic with what I’d thought was appendicitis. That day was the beginning of nearly five years of treatment that did little more than slow the progression of her disease.
Ana’s initiation to cancer began with a hospital stay that lasted from August 25th through October 2nd — 38 days. It took that long to diagnose her specific type of tumor and to stabilize her so that she could be released. It felt like purgatory as we waited in her hospital room while her friends returned to school. It was a time that brought with it the crushing, desperate need for her to be healthy so that we could just, please, get back to living our lives as we had before.
I wept and cursed the universe for the loss of normalcy. I could not understand how this was happening to my child and my family. I put all my energy into getting her through it so that we could once again resume our lives. I looked forward (and forward and forward) to a time when she was well again— at least, at first.
I guess I thought that once Ana’s cancer was gone, we could pick up where we left off. At that early point in her illness, I was unable to grasp that things would never be the same again.
Ana started chemotherapy during that first long hospital stay and we limped through the remainder of 2012, hoping to save her liver, which was where the tumor was growing. But the chemo didn’t touch the tumor and so we began 2013 by moving Ana’s care to a renowned transplant team at Columbia Presbyterian in New York City. She ultimately had the transplant on February 5th, 2013. That was the first year I lost.
Looking back through a lens of grief, I recognize 2013 as a year not entirely lost because Ana was still alive to see it. The liver transplant saved her. She’d stopped growing at some point in 2012 even before we realized how sick she was, but by April of 2013, six weeks after the transplant, she was clearly growing again. Her color and appetite returned. Her hair, which had fallen out a few weeks after she started chemotherapy, began growing back.
She’d been attending school remotely, Skyping into her classes each day and getting personalized instruction from her teachers on a weekly basis. Our lives weren’t even close to normal, but some modicum of routine had returned.
Ana had to take upwards of 25 pills per day. She needed weekly or bi-weekly blood draws to monitor her liver enzymes. She took the six-hour round trip to the hospital regularly, for follow-ups, scans, and tests.
As the months passed, I grew accustomed to uncertainty, but I held tightly to the idea that we would eventually go back to some semblance of life the way it had looked before cancer. In September of 2013, just as things seemed be stabilizing, Ana had a follow-up MRI that revealed two new tumors.
I will not delve into the subsequent years of treatment that carried Ana through the next four years of her life. What I will say is that those years created a shift in my awareness of time, normalcy, and in my own expectations about life.
At some point after Ana was pronounced terminal by her doctors, but before she began the painful business of dying, I stopped wishing fervently for the end of the nightmare. Instead, I learned how to adjust my expectations to whatever cancer threw at us.
I discarded my previous understanding of what normal looked like, content to let the days, months, and years carry me forward in whatever shape they wanted. I discarded all previous assumptions about my life and my future, and the misguided notions I’d had that somehow I was immune to sorrow in ways that other people weren’t.
To hell with expectations. What did any of it matter beneath the harsh light of Ana’s stark reality? My fantasy about what anyone’s life was supposed to look like was just that, a fantasy. I realized, with what I imagined was profound wisdom, that the universe didn’t owe anyone anything. Still, Ana was alive and so it was easy to weather the uncertainty of the days, months, and years. Nothing is ever certain, right?
But it turned out that no matter how much I embraced (or accepted) the chaotic randomness of life, I was entirely unprepared for what my world would look like after Ana died on March 22nd, 2017.
I lost the entire year. The first three months of 2017 were fraught with agony, worry, and pain as Ana’s cancer snowballed, spreading throughout her abdomen and lungs. It grew as she shrank and I couldn’t do a damn thing about it. When she died, she took a part of my heart with her to wherever her soul currently resides.
I wandered through that year, bereft. I did not work. I did not socialize. I left my house only to sit outside in my yard and watch the birds or to take walks in nature. Being outside was my only comfort, but it was a small one. I no longer cared about returning to normal because for me, my husband, and my younger daughter, there would be no going back to our old lives.
Three years have passed, so I have some distance from that year, and from the five years I spent riding the uncertainty of childhood cancer with Ana through to its terrible end. I now recognize how my awareness shifted over time, moving away from what can only be described as arrogance about my ability to control my life, and the lives of my children.
There was no one to blame — no villain or enemy or event. It was just Ana’s bad luck. She got sick and she died. I will spend the rest of my life missing her. Yet, I also know that the rest of my life will now be shaped by what I learned about uncertainty and the loss of “normal” that was born from experiencing such a monumental catastrophe.
I had allowed some expectations to creep back into my life when stories about the virus began appearing in the news back in January. The coming storm took a different shape from Ana’s cancer, but it engendered the same relentless feeling of dread. It hit New York in March, with Cuomo shutting down the state on the third anniversary of Ana’s death. It’s still hitting, even though there’s a robin building a nest just a few feet from my window.
Spring is here in spite of the virus. My bird feeders are active with goldfinches, cardinals, mourning doves, and blackbirds. The hyacinths and tulips in my small garden are in full bloom. The tiny magnolia tree that Ana gave me for Mother’s Day four or five years ago is already losing its flowers. Outside, the world looks normal. But in here, where my dishes are clean and my laundry folded, life is still on pause.
“I will lose another year,” I think to myself as I pour a cup of coffee on yet another Sunday devoid of plans or purpose. But this thought feels meaningless, unhelpful. The years are not a given. I, of all people, should realize this. This year will not look like I thought it would, but my expectations are subjective. I know, from experience, that there are only three things that matter right now: patience, gratitude, and kindness.
Be patient. That’s the advice I would give anyone who is sick of all this waiting and worry, to those protestors parading in the streets and the politicians eager to start up the economy again. We cannot change the fact of this virus. We can only do our best to stay safe, keep our loved ones safe, and wait for people who are smarter than us to find a treatment or a cure. We must accept that there’s no way to know what the landscape of our lives will look like when the waiting’s done.
Be grateful. If you are able, then use this time to reflect on the blessings in your life, while also expressing gratitude for those people — the nurses, doctors, postal workers, supermarket employees, and the essential workers who are making it possible for the rest of us to ride this thing out in comparative safety. Be grateful for the people you love and for those that love you.
Be kind — to yourself and to each other. There was already an incredible divide in America before the virus. This divide is our current normal. But we are now in a life or death situation that puts every single one of us in peril, regardless of what we do or do not believe in. What if we help each other because that’s the only way to make it back to some kind of normalcy? What if we don’t revert back to the status quo of hatred and derision after this is over?
The expected, anticipated future we all assumed was a given is up in the air. Waiting for what comes next is incredibly hard. It requires a certain level of sacrifice and resiliency that we’re not used to giving. It requires faith that we can figure out a path forward once we’re past the worst of the disease.
There is no way around this. We can only go through it, then learn to accept the new shape of our world once this is over. A year’s really not that much time to lose when you consider the alternative.