The Country Is Reopening. I’m Still on Lockdown

For those of us with vulnerable loved ones, the risks of Covid-19 seem more dangerous than ever—with no end in sight.
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ILLUSTRATION: MARLY GALLARDO

My partner and I always drove to the hospital together. Every three weeks, for the past six months, we parked near the block-wide building, rode the elevator to the fifth floor, where a technician would draw two vials of his blood. Then we took the elevator to 6, and met with his oncologist. After that, back on 5, he sat for about two hours in a comfy chair that reclined while immunotherapy and chemotherapy drained into his veins to fight his lung cancer.

But on Tuesday, I said goodbye at our front door, told him to text me as he made his way through those steps. Only patients go into the hospital now. It makes sense. Even though the cancer center is in its own contained chunk of the hospital—no Covid-19 patients around—limiting the number of people in the building, and therefore anyone’s exposure, is the best choice right now.

So I don’t go to the hospital. I don’t go into most stores. I’ve grown strangely comfortable asking friends to shop for us. When they deliver groceries, I still wipe down every box, carton, banana.

I go through this routine at my house, and then I do it again at my mom’s. Mom is 85. She takes exercise classes online, goes to church via Zoom; she meets with her book clubs there too. She works on a new novel. She takes blood thinners to avoid a stroke. She has atrial fibrillation.

In the early days of the pandemic, we didn’t know much. But we did know that the disease attacked people’s lungs. We also knew if you had a compromised immune system—say, from being in treatment for cancer—you were at greater risk. We also knew early on that Covid-19 was hitting older people hard, especially if they had underlying health problems; in March, early studies were showing that the death rate among people over 80 was far higher than in younger people. When the pandemic arrived at my doorstep, my days became a tight triangulation of new rituals to keep the people I loved most from dying.

This isn’t just my story, of course. There are millions of bubble people—people who have cancer or diabetes or heart disease, or other conditions that make them more vulnerable to Covid-19; people with older parents; or people who live with or care for these folks.

Maybe you too are profusely thanking friends for bringing you groceries.

Because what else are we going to do? Besides wash our hands, read the news, worry, wipe down packages, and wait for the scientists to tell us if we still have to wipe down packages. We wait for the drugs that can make us well if we get Covid-19. We wait for a vaccine.

And now, as more parts of the country begin the Great Reopening, we agonize that we might have to be even more vigilant for a long, long haul. From the start, epidemiologists have warned that the measures we took to slow the disease weren't a solution to keep people at higher risk safe in the long term.

This week, the journal Nature published two large studies estimating that shutdown orders prevented some 60 million novel coronavirus infections in the US and saved some 3.1 million lives in Europe. But as those orders recede, the danger could sweep back in. “This is just the beginning of the epidemic; we're very far from herd immunity," an author of one of the studies, Samir Bhatt, told The Washington Post. “The risk of a second wave happening if all interventions and precautions are abandoned is very real.”

A year and a half ago, we got the results of a biopsy and a PET scan. We were sitting in the office of the woman who would become our primary oncologist. My partner perched on an exam table on my right. I balanced on the edge of a small chair; his mom tucked herself between me and a cabinet. The doctor sat on a low stool in the corner. About half way through the appointment, she looked at my partner and said: “Can I be honest with you? The average for a patient in your situation is two years.”

He responded fast: “OK, then we’ll have two more years for new treatments to show up.”

In ways, he was right. Since immunotherapy came into wide use about six years ago, cancer research has boomed and new treatments have emerged. There are more than 439 clinical trials happening right now for my partner’s type of cancer. We just have to last long enough. That is the fact that I hold onto every day. My best friend died of ovarian cancer in 2003; if it had been 2020, she would very likely have lived much longer.

To defeat most metastatic cancers you need to be one of a small group that just happens to have the right genetic makeup—cancer cells that truly die from chemotherapy instead of becoming resistant, or the lucky proteins that seem to make immunotherapy work—or you need to bear the treatments long enough for the science to catch up.

My partner has survived a brutal surgery. Four rounds of radiation. Chemo and immunotherapy infusions nearly every three weeks. His body has responded brilliantly to each battering. So much so that along the way he—we—have managed to find some sort of ordinary. Friends ask how we are doing, and often I’m able genuinely to say, we are OK. He cooks me soups and chicken tikka masala. We watch Colbert. We make lists of movies and TV shows we want to watch. Last year we rented an Airbnb in Tahoe. We attended family birthdays. A new restaurant each time. We didn’t miss one.

During those months, the science and the scientists did forge ahead. My mom started taking a safer blood thinner. She and I saw every performance put on by the opera company my brother runs in Oakland. We went on a road trip to Oregon. Just last month a new drug combination was approved by the Food and Drug Administration as a treatment for my partner’s cancer. But now we have a whole new cadre of scientists to wait for: the ones working on Covid-19.

There are blue skies. Covid-19 has galvanized more researchers and public health experts and epidemiologists than at any time in history. They are working together, and working fast. “The science is growing at this unprecedented pace,” says Maia Majumder, a computational epidemiologist at Harvard.

Dozens of organizations are trying to find a viable vaccine. Dozens more are trying to figure out how to cure people when they get Covid-19. More still are studying plasma therapy—the century-old idea that we can use the antibodies in the blood of patients recovered from Covid-19 to help the newly afflicted. People at a company called ClosedLoop.ai are building an index to identify the most vulnerable, creating models to identify who is at the greatest risk, and using those models to “mitigate the disease's worst effects.”

That Covid-19 isn’t terribly deadly for healthy, young people is also helpful for people at high risk. “When I studied Ebola,” Majumder says, “it was harder. That disease had such a high death rate, so there were fewer people who had recovered”—fewer people from whom to learn.

I’m not unrealistic. Good science needs rigorous clinical trials, and those take time. Our best hope to allay the dangers of Covid-19 is a vaccine, and the best case scenario is that a vaccine is still a year out. Even then, if something works—glory be—making it widely available will also take time. The truth is, we simply don’t fully understand this disease yet. “When we have a better understanding of what this first outbreak has really looked like,” Majumder says, “that will really help us understand what normalcy looks like.”

For millions of Americans, though, keeping “normalcy” at bay for such a long time is a luxury they can’t afford. People need to hold onto their jobs. Or find new ones. The streets are filling up with Americans who are responding to one national crisis—that of police brutality and systemic racism—in the midst of another. And the economy is in cardiac arrest.

Just last week, to address this, the governor of my state announced an “accelerated” reopening. In the last weeks, there were about 1,500 new coronavirus cases in our region, an increase of 37 percent. In all these headlines, I can see cracks in the walls I’ve built around my mom and my partner. How do we bubble people stay safe as the world moves ahead? “In some ways people who are immunocompromised have lived their lives in preparation for all of this,” Mamjunder told me.

Not long ago, in response to WIRED's Covid-19 coverage, the publication got an email from a woman named Brandy Stephens who’d been diagnosed with acute lymphoblastic leukemia in 2014, when she was 26. She and her husband had a 1-year-old daughter. Her treatment put her in the hospital for 165 days, 35 of them on a ventilator. “During that time a mere houseplant could have killed me,” she wrote. “I had multi-organ failure, my bone marrow died, I had pulmonary embolisms, a partially collapsed lung.” Then, a stem cell transplant built her a new immune system. In July 2019, at the five-year mark, Stephens was finally able to be reimmunized, “against the scary things that babies are immunized for.”

“Most of the world does not know we exist,” she wrote.

I called her to ask about how she did it. I needed to know how to shepherd my mom and partner through a reopened world. “I couldn't eat takeout for a year post-transplant. I carry sanitizer, gloves, masks, Lysol with me.” She added, “My husband is my rock. It has become second nature to have real quirks, to, say, go to family gatherings but not get close to anyone.” She knows how to do this. “I feel for people who never have had to isolate before,” she added, “I went through that struggle.” (Immunocompromised people have figured out how to protest too.)

We are lucky to live in an area that has kept the overall coronavirus numbers low, yet the steady tick of reminders about potential Covid-19 resurgences haunt me. For everyone in this pandemic, it’s hard right now to accurately see a future beyond quarantine. Will we return to “normal” this year? What does “normal” mean? Something different for all of us, of course.

Brandy Stephens with her husband.Photograph: Sheryl King

Last Friday afternoon I was working at Mom’s house, and I took a break. We were sitting in her living room, on her lovely blue couches. The dog tucked his head under her arm. Mom asked me what I was looking forward to.

The question jolted me. In pre-corona times, I tried to keep things on the calendar to look forward to. But over the past two months I have shut that instinct down.

Now, my mind ricocheted. Restaurants. Could I look forward to eating at our favorite pizza joint? My partner’s brother: He just added a new floor at the top of the house, a big glorious room with sliding glass doors that open to a porch overlooking the Pacific. He wants to have parties in that big, cheerful space. Will we be there?

Here are the things I hope to put on my calendar someday soon: dinner at our friends’ house. Driving with Mom for a day at our favorite beach, without worrying about crowds. Those parties at my partner’s brother’s house, in that big, cheerful space. And if need be, flights to a different city if the new treatments we need for my partner’s cancer arrive, via a trial, somewhere else.

I hope I can put all of those things on the calendar, for the time we have left together.


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