Tug-of-War

The Pediatric ICU at Doernbecher Children’s Hospital is loud. Alarms go off all the time, and residents and nurses rush to a room. Monitors shout their data. When the IV drip runs out, the machine beeps. When oxygen levels drop, the pulse oximeter screeches.

When my son was an infant, he was on ECMO, or extracorporeal membrane oxygenation, an extreme form of life support that bypasses the heart and lungs. It was invented for open heart surgeries, but now is sometimes used for respiratory failure in babies.

ECMO meant that my son had a nurse in his room day and night. They had to monitor the lines that looped his blood out of the carotid artery in his neck, oxygenated it, and fed it back to his body. Clots were likely, so someone had to sit there and bang on the machine with a closed fist every once in a while to loosen the lines. In addition to his assigned nurse, there were X-ray techs coming to get photos of his lungs, surgeons checking his incisions, residents on pediatric rotation, respiratory therapists who specialized in ventilators, paramedics—the only people skilled enough to get IVs into tiny infant veins—and a palliative care team who worked with my husband and me to determine what would happen if he didn’t make it, and if he did, what quality of life he would have.

It was so busy, and I had never felt more alone. All my attention was focused on the little body that had been severed from me, that was nearly severed from itself. The beeps of the morphine dispensing, the antibiotics, the anticoagulants. Bubbles of oxygen seeping out the tube; the EKG showing the terribly dull brain waves; the bright ruby sheen of his blood; the smell of him so fresh and soft and enticing despite all the antiseptic. My own body, aching where they had cut him out of me. Aching with the absence of him.

But around the room was this strange arising energy, a centrifugal whirling. People were coming together to save a days-old infant, lending their expertise and kindness in whatever doses they could. I sat at the center of this benevolent hurricane. They let me sit and grieve and they whirled around me. It was a spontaneous, transient storm, formed not of old bonds but a common and urgent purpose. While that common energy didn’t stop my loneliness, it held me together, like fingertips pressing a shattered china teacup back into shape.

The view from Doernbecher is beautiful: the Willamette snaking beneath Portland’s bridges, all those cars streaming away in silver lines. Sometimes you can see Mount Hood, sharp-edged and white in the distance.

It’s a lonely view. Anyone who has spent time receiving medical care in a hospital knows that the windows feel like escape hatches but also like taunts. The view—of trees, of rain, of people going about their daily lives—feels both comforting and grossly unfair.

Joshua Bell’s window looked down onto the parking lot. The sixteen-year-old was back for another treatment in the pediatric oncology ward. With COVID-19 restrictions in place, he could only have two visitors total, one at a time. That meant his parents, Mark and Sara, were his only contacts when he was undergoing chemotherapy. He missed his brother. He missed his friends.

One day, Joshua’s classmates called him on FaceTime. They were grinning and holding signs, and something about where they were standing looked familiar. Joshua went to the window and looked down: there were four teenagers in the parking lot, backs to his window, waving into a tiny screen. He could see himself in the background of their video.

“It made it a lot more manageable,” says Joshua. “Seeing them in person, even if we’re just communicating over FaceTime ... it’s hard to describe, but it’s just so different for me.”

Medical care like what Joshua is undergoing often requires isolation. To keep their bodies safe, patients step back from daily activities. Their loved ones find themselves in a parallel universe of appointments and medications, strange rooms and masked specialists. Receiving care requires near-total immersion in this new life. Old commitments are set aside and plans abandoned in favor of one goal: healing.

Being removed from daily life takes a strain on our mental and physical health. Those undergoing care can create community within the hospital setting, but care-based relationships are often transient and have some inherent boundaries. Maintaining connections to outside friends and family becomes essential. Through gifts, window visits, letters, and photographs, patients are reminded of the web of care that exists beyond the walls.

In 2022, we are all familiar with isolation. Everyone has, to some degree, learned what it feels like to detach from our normal lives.

Isolation during the pandemic has been both protective and damaging. Quarantining can be seen as an act of community care; to stop the spread of the virus, to defend elders and the immunocompromised, we have gone into our homes and stayed there. Some of us have taken pride in our commitment to protect others, but we’ve also suffered record rates of mental illness, loneliness, and substance abuse.

For some folks who have remained out in the world working, parenting, or doing other essential tasks, the isolation has manifested in a sort of cognitive dissonance. We are in crowds yet still hunched into masks, hurrying through the necessities to get back to the safety of being alone. 

This tension manifests even more strongly for people with medical conditions. Even in non-pandemic times, receiving medical care is often a lonely, confusing process. Now, care often means severing our connections to the outside world. To heal, we cut ourselves off from those we love. But without them, how do we heal?

When she was twenty-five years old, Ericka Sullivan’s cancer came back. She’d beat it once, and the second diagnosis devastated her. “My hope was kind of gone,” she recalls. “I felt super isolated, not in a physical sense but just lonely. Very alone. I knew my community was there, but I was struggling so hard.”

She received a bone marrow transplant, which would kick-start her immune system. The caveat: she had to isolate in her home for one hundred days. For a few weeks, her mom stayed with her. After that, a rotating crew of friends and community members became her caregivers. They took regular shifts, two people per day, five days a week. “When caregivers started coming in . . . I felt better. I think I was so grateful to not be physically alone,” she says. 

Sullivan’s story makes me think of a long rope, pulled taut from both ends. On one end of the rope are the people who sustain us: best friends, parents, kids, coworkers, the familiar server at our favorite diner. On the other end is the body, struggling to heal and thrive. In the center, like a red flag tied to the rope in a tug-of-war, is the self.

In good times, our loved ones often drag that flag close, for we need community to thrive. Research has shown that having social connections increases longevity, immune system functioning, and overall wellness. Saying that we’re social creatures is more than a platitude; human beings need each other.

But in times of medical care, the body tugs back. It needs our attention. Sometimes it needs physical isolation. Our community recedes in favor of the body’s immediate demands. And yet we cannot heal—not really, not well—without them.

“People really need the support of their network in order to do well in the hospital,” says George Keepers, professor of psychiatry at the OHSU School of Medicine. Family can do practical things for patients, Keepers says, like explain a complex medical history or help patients keep up with appointments and medications. But they can also help prevent conditions that impede healing.

“Lack of social support and isolation are a significant risk factor for depression,” says Keepers. “Depression is well known, actually, to produce poorer outcomes in a number of conditions.” In other words, the physical body depends on good mental health, and mental health depends on community. 

So what do you do if you’re a sixteen-year-old cancer patient in a pandemic? How do you isolate for your physical safety but still stay close to the people you love?

At home, twelve-year-old Matthew Bell walks his dog, Packer. He goes for bike rides by himself. He makes small crafts. When his brother Joshua was home more, they crafted together and made short films for their YouTube channel. Now Matthew calls his brother a few times a day to check in, since he isn’t allowed to visit.

“I think for the two of them that has been one of the hardest things,” says Sara Bell, Joshua and Matthew’s mom.

COVID-19 has exacerbated isolation not just for patients, but also for their families. Susan Sherwood is the child life specialist for the pediatric oncology ward at Doernbecher. She says many of the families want connection when they arrive for care.

“They feel isolated from their normal lives, and they also are struggling to develop a new normal for themselves,” she says.

To facilitate that new normal, Sherwood helps provide support for siblings and families, prepares patients for medical procedures, and tries to help young kids figure out what’s happening to them in developmentally appropriate ways.

She also tries to make life in the hospital as fun as possible. She organizes bingo nights, art events, movies, music, and catered dinners for families. There is the costume cart with free dress-up clothes delivered by a nonprofit, Chelsea’s Closet. Kids can walk laps of the floor, adding up their miles to try and get a pair of Nikes. Sherwood says the hallways are usually a place where parents can briefly connect with each other. It’s these liminal spaces—the break room, the halls—that provide transient moments of community, where moms and dads can meet other parents going through the same difficult experience.

However, most of these activities have been restricted throughout the pandemic. Joshua’s dad, Mark Bell, laments that the virus has made parents more leery of connecting in person. “In general, it’s scurry on and get back to your kid’s room,” he says.

That’s especially hard when your kid is seriously ill, because it can feel like no one shares your experience. Friends outside might be supportive, but “it’s not the same if you’re not talking with someone who knows what this is,” says Mark. 

Mark and Sara take shifts at the hospital, trying to time their arrivals and departures so that they have a few minutes in the parking lot together each day. Otherwise, they don’t see each other for the four or five days of Joshua’s hospital stay.

“It’s robbing families of that precious time,” says Sara. “When you’re going through the most grueling thing that you can imagine, you need one another. Physical touch is huge.” 

Denied that touch, families have to find other ways to connect. Matthew does crafts at home and sends them with his parents to deliver to Joshua: felt wool dogs, a miniature Indiana Jones board game. Gifts bridge the isolation. They’re a way to reach across the distance and hand something physical to the person on the other side.

Over the weeks my son was sick, I got to know the nurses well. We chatted about our lives outside. They watched me weep silently over his bed. They forced me to brush my teeth and eat. They helped take his footprints, gave him stuffed animals to prop up his limbs, and cried when he survived the surgery coming off ECMO. 

When my son weaned off his last ventilator, we transferred to another ward. I never saw most of those people again, but if I met them in the street, I would get down on my knees and thank them. I would call them family.

Spontaneous care communities form under crisis, but they fade when you leave the hospital. And medical staff are not family. While nurses, doctors, and medical specialists feel deeply about their patients, they need boundaries to maintain both their mental health and the professionalism of the patient-caregiver relationship.

“We as staff try to be very mindful of those good boundaries too, because we are there as caregivers, not to be their new friends and their new community outside the hospital,” says Sherwood. 

And yet. And yet. I had a text chain with many of my son’s caregivers for years after his birth. It was probably against several HIPAA guidelines, but none of us cared. We needed each other to heal from what had happened to that little body under our care. 

Ericka Sullivan’s caregivers were also her friends and family. For one hundred days, pre-pandemic, her community knocked on her door. Every time they did, she recalls thinking, “Somebody showed up.” Her hope returned, along with her sense of self.

Showing up for someone doesn’t always mean walking through the door. In COVID times, you often can’t. While she was in treatment, Sullivan’s friends wore special T-shirts and took photos of themselves, filling a blog for her with their travels and good wishes. She says several people who had never met before saw each other on the street wearing her T-shirts and realized they were part of the same care community, people whose lives were whirling around Sullivan’s recovery.

When we are physically distant from each other, objects become talismans. It could be the rough-knit purple hat that someone left in our PICU room, from a volunteer who made them for babies in critical care. It could be a paper letter from the woman the Bell family met on a ferry in Alaska, or the signs Joshua’s classmates make for him. It could be a photo of friends at a Blazers game, grinning and repping your recovery T-shirts for the jumbotron.

Thoughts and prayers are not enough. Nothing is enough when you are very sick or someone you love is sick. Still, on the day that my son had surgery to come off ECMO, we asked friends and family to read a children’s book. People sent videos to my email. They were curled up with their kids reading The Very Hungry Caterpillar and Home for a Bunny and Llama Llama Red Pajama. The kids wore jammies and the parents tucked their small bodies close, in laps and nestled under arms. 

I was preoccupied with the surgery and didn’t watch the videos until much later. But I did see the names piling up in my inbox. I refreshed and refreshed. Each bold name felt like another hand holding my back, holding my hand, holding me up when I wanted to fall. I stayed upright because people were out there rooting for us, reading with their beloveds. It wasn’t enough, and it was everything.

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