My Breast Cancer Diagnosis Came In The Pandemic. I Wanted...
"You have breast cancer," my doctor announced, faceless behind her mask. Silence. In the middle of a COVID-19 pandemic. Her eyes locked on mine and beamed as much compassion and kindness as she could muster.
"I'm so sorry," she said as we faced each other 6 feet apart in her office.
That was it.
The COVID-19 virtual hug: cold and sterile. Punishing, despite the best intents.
As friends came to my home to visit, the weight of this emotional disconnect became increasingly difficult to bear. At a moment when I so desperately needed spontaneous physical connection and warmth — simple human love – there was none. Just sad faces at a safe distance.
"I'm so sorry," they would all say.
That was it.
Distressed, my mind took me back to West Africa's devastating Ebola outbreak of 2014, resurrecting images I had desperately tried to suppress. In an instant I was in Port Loko, Sierra Leone, where I managed a Partners in Health Ebola Treatment Unit, listening to the agonizing wails of our patients, alone in their beds with no one next to them to provide reassurance or comfort. Back to the sick children, scared and alone, with whom I would spend time, uncomfortably crouched in my Ebola suit, carefully hugging them and singing muffled songs through my masks. Back to the midnight palliative care rounds for the gravely ill, where I would just hold a hand, provide words of encouragement, give pain medication or stay with our sickest patients as they approached the door of the otherworld. Just so they wouldn't be alone.
And my mind took me to Detroit's nursing homes and their vulnerable population, disproportionately impacted by COVID-19. This summer we at Doctors Without Borders provided much needed support. With the outbreak not under control and facilities off limits to all visitors, residents faced an endless, harmful, solitary existence. Grandparents died alone, with good-byes bid over Zoom. Social distancing at all costs became a thing.
I've worked for Doctors Without Borders for six years and had my share of difficult and heartbreaking experiences. I don't work in easy places. I work in war zones and countries with little to no health-care system to speak of. I respond to refugee crises, natural disasters and disease outbreaks. I have gotten used to danger. I've gotten used to falling asleep with worries of being infected with Ebola or being attacked by an armed group.
But what I never have gotten used to — and never accepted — was the loneliness. The loneliness of those crowded Ebola treatment units in West Africa and then again in the Democratic Republic of Congo in 2018. The sorrow of families and friends who undoubtedly felt they were abandoning their loved ones. The loneliness of dying alone. The absurdity of dying on Zoom in an overcrowded New York city hospital – nurses would hold their iPad and people would say their goodbyes.
Not even in war do people have to face hardships alone. The contagious nature of COVID-19 and Ebola managed to instill enough fear to make us — in the name of safety — less human. At moments when we needed each other most, vital social connections were brutally banned. In Sierra Leone, our clinical team remedied this by starting what may have been the first supportive care rounds, specifically for those patients who would clearly not recover, ensuring that these individuals always had someone with them at their most fragile moments.
Over time, organizations involved in the care of Ebola patients improved the design of Ebola treatment units so patients could be closer visually – but also physically — to their loved ones. Family visiting areas were installed at a safe distance right across patient rooms, where large plexiglass windows were installed. The CUBE, a self-contained isolation room with transparent walls allows families to be right next to their sick loved ones.
We found a way to do it, and we knew it made a huge difference.
So how did we go so wrong that the COVID-19 response of the world's richest country collapsed to the level of not being able to provide to the most basic human need – that of not being alone in moments of sickness?
It didn't have to be this way with COVID-19. With lessons of past outbreaks to guide us, with strong institutional and individual national expertise to lead us, with the experience of countries who fell to COVID-19 before us, we knew what could have been done to protect ourselves, prevent the spread of disease and the overload of our hospitals.
We knew what kind of preparations and precautions it would have taken to give that hug and hold that hand safely. To be together safely.
Today I am home in Seattle, halfway around the world from Africa. I now have become the patient, the one anxiously waiting alone on a gurney that will take me to the operating room. I grieve the lack of physical connection. It's not words I need, it's proximity. It's touch. Back to that hug, that holding of the hand. That reassurance of being next to one another. It speaks a thousand words. It goes a million miles.
So please, mask up. Wash hands. Practice safe distancing. Do your part so that we will be able to reach the point where we can again get that human bond that makes patients stronger and able to weather the storms.
Do your part so we can finally get back to normal. It is long overdue.
Karin Huster was a field coordinator for Doctors Without Borders on its COVID-19 response in Hong Kong and in Detroit. She is now back home in Seattle, working with USAID's Bureau of Humanitarian Assistance as a public health adviser and focusing on the Democratic Republic of Congo's ongoing Ebola outbreak.