By Linda Hansell
There were nine family members camped out in the ICU waiting room at Boston University Medical Center, our bodies and our backpacks taking up half of the room. We had been summoned to Boston urgently by my sister-inlaw Andrea when my brother Jim went into septic shock.
Four months earlier, in December 2012, Jim had been diagnosed with amyloidosis, a rare disease caused by a build-up of abnormal proteins in the body’s organs. He underwent chemotherapy at Boston University Medical Center for ten weeks in early 2013. At the beginning of April, he had a stem-cell transplant, the most promising treatment for amyloidosis. While he was immuno-suppressed from the chemotherapy, and before the new healthy stem cells could take hold, he contracted the H1-N1 flu virus. On April 12, he went into septic shock and was transferred into the intensive care unit.
Andrea called at 6:30 AM that Friday morning.
“Jim crashed this morning, and they’re taking him to the ICU,” she said. “The doctors are saying that anyone who wants to see him should get here right away.”
Implicit in her words was: ‘see him before he dies.’ I assured her I would get there as soon as I could. Terrified, I hung up the phone.
I couldn’t focus on the concept that my beloved brother—a vibrant man pulsing with life and enthusiasm–was on the brink of death. Jim was a loving husband, father, brother, son, psychologist, professor, mentor, musician, and soccer coach who was much-loved by his family, friends, colleagues, students, and patients. His broad smile under his bushy black mustache bore witness to the joy he derived from teaching his psychology students, planning conference workshops with colleagues, and accompanying his son and daughter on runs and bike rides. Jim embodied a life of helping others, of expanding possibilities, of putting more love into the world. Death seemed contrary to his very nature.
I packed frantically in my home in Philadelphia that early morning and called a friend to drive me to the airport, not knowing how long I would be away. When I arrived at the hospital in Boston, Jim was struggling to breathe. I got there just in time to say “I love you” before they intubated him. Later that day, other family members arrived—my father, my older brother and his partner, my niece and nephew, and Andrea’s two brothers.
Over the course of the next week, we watched Jim’s body in that hospital bed transform from a robust middle-aged man to an old man. He was unconscious, so he did not know that his hair turned from black to gray, his kidneys failed, his eyes became swollen and unable to see, and one by one his organs and systems shut down as his body succumbed to septic shock. Towards the end of that week, the nurses put pads over his eyes so that we wouldn’t have to see the frightening, monster-like bulging orbs they had become. It is a horror that will never leave me.
But amid all of this dreadfulness, there was love. All through the week, my family and Andrea’s family kept vigil over Jim, our hopes rising and falling with each new development in his condition. We took turns singing his favorite Bob Dylan, Rolling Stones and Alison Krauss songs to him, talking to him, and holding his limp hand, not knowing if he could hear us or sense us. I told him how much I loved him, and about my newly discovered favorite bands. “We’ll listen to them together when you get better,” I said. “I know you’ll love them, too.”
We encircled Jim in this caring sphere, trying to block out the beeping of the monitors from the numerous pumping and filtering machines he was connected to, and trying (but not succeeding) to follow the nurses’ advice to not look at the numbers flashing in red, green, and yellow on the monitors showing his vital signs.
Andrea set a tone of caring and compassion, not just for Jim, but also for the intensive care nurses who took exceptional care of him, and for the doctors who brought us increasingly worrying reports as the week went on. There was no anger at the doctors or nurses, no blaming or recrimination for Jim’s worsening condition, no judging or yelling or keening. In the face of the calamity that was unfolding before us, despite our exhaustion, our worries, our grief, we loved each other, and everyone around us, hard. We supported each other as best we could. We hugged, we spoke gently to each other, and we looked after each other’s needs for sleep and food. We took turns doing food runs, bringing back take-out sandwiches, salads and cookies for the group.
Being in the presence of death and dying can bring out the worst in people, or it can bring out the best. Somehow during that wrenching week in the ICU, we embodied our best selves, and showed appreciation and gratitude to the people around us, both in our family circle and outside it. This circle of love grew to include Anne, a young woman from Haiti I befriended in the ICU waiting room. Anne was there by herself, day after day, in support of her mother who was very ill. We shared our food, and shared stories about our loved ones who were sick. I learned about her devout faith in God. She told me she was not worried about her mother, because God would not let her mother die. I envied her faith in a good outcome.
It was a time out of time. Surreal and sacrosanct. Connected by our deep love and care for Jim, we created a form of beloved community there in the medical ICU ward of Boston University Medical Center, with death and dying all around us. In the cheerless, heartrending, anxiety-filled space of the ICU waiting room and Jim’s hospital room, where all present were keeping vigil over a loved one at the threshold of death, I felt a sense of community and love unlike any I had experienced before.
When it became clear Jim was not going to survive without the aid of the machines he was connected to, and the time came for us to instruct the nurses to turn off those machines, we formed a circle around his hospital bed. With the room quieter without the whirring and pulsing of the machines that had been keeping him alive, we sang him off to the other world with “Tender Shephard” in a three-part round. There was a searing sacredness in that moment.
The initial sharp, stabbing pain of losing Jim has transformed over time into something more bearable, like a burl on a tree trunk around which the tree grows. The sadness is always there, in equal measure to my love. But there is also the memory of the circle of love we created. There is the knowledge that even when our hearts are cracked open with grief and fear, even when we are faced with losing the people we love most in the world, we can choose love over anger and bitterness.
The circle of love we created while keeping vigil over Jim in the ICU was the most sacred experience of my life. Out of that circle emerged a truth that I keep close to my heart: love transcends death.