Live One Day
Updated: Feb 3, 2021
Insight into how caregivers can repeatedly bear witness to tragedy.
"Better it is to live one day seeing the rise and fall of things than to live a hundred years without ever seeing the rise and fall of things." - From the Dhammapada
We physicians stand witness to countless tragedies in our careers.
At some point, as we stand by the bedside of a dying patient, comfort a heartbroken relative or officially call a death, we learn that love and loss, and sorrow and joy, are intertwined. They depend upon each other. They are two wings of the same bird. Dealing with loss after loss, we learn to look for the beauty in all of it. Sometimes, we have to look really, really closely to find it.
I first learned this in residency as I stood at the bedside of one of my patients as she died. I had seen many die before her, but her death stirred something deep inside me. She was an infant, not quite a year of age. She had been born with a congenital problem with her heart that progressively worsened through her short life. Her parents were young yet devoted caregivers. They stayed by her side through each of her long and frequent hospitalizations. She may have gone home for a total of two or three months, staggered in days or weeks here and there. Her brief stays at home were often interrupted by setbacks, surgeries, doctor visits, drips, tubes, needles and the eventual next admission. Strange adults flowed into and out of her rooms — attending physicians, specialists, residents, nurses and therapists in the neonatal intensive care unit (NICU), the pediatric intensive care unit (PICU), the medical floor, the radiology suite, the emergency room, the PICU again.
That is where she would finally come to rest. Her death, although untimely, was an eventuality. We who cared for her, and her family, had all come to accept this. Her tubes were removed. We stood in the darkened hallway beyond the glass that separated her room from the nurses’ station. Her parents hunched over her, sobbing quietly at her bedside. One final moment to touch her warm hand, to clutch her close to their chests, to stroke her dark, soft hair. The monitors beeped slowly and softly as if they sensed more than just the dying music of her heart. I remember how agonizingly long her sweet, diseased, tired heart held on. We watched and waited for what felt like an eternity. As we prayed for her to be at peace — another heartbeat … ping. As we gazed at the huddled backs of her parents’ heads through the glass — ping. Here and there, life so tenacious and steadfast even in dying.
Ping … ping … ping.
The monitors, of course, eventually and finally, fell quiet. There was a moment then where stillness hung in the air — a thick, hot cloud that choked out the breath of every soul standing witness in the PICU that night.
Then her father stood up with a sudden, unexpected jolt. Heavy, wet droplets of tears fell directly to the ground with the weight of his loss. He charged across her small room to her wardrobe purposefully. His whole body shook with wails of sorrow and torrents of tears soaked his face and mixed with mucus from his nostrils. Fragile, broken, I thought that he would crumble to the ground. Then, unwavering, delicately, he lifted out one of her small, pink outfits hanging there. A dress of flowers and ruffles. He brought it to his face and sniffed it deeply, yearning for some sign of life left there. As if he were about to dress his precious baby, he tenderly extracted the hanger, folded her dress, creased it, gently, perfectly and placed it into a small suitcase. Her mother looked away, clinging to her body, burying her face in her soft powdery hair. Perhaps the last time he packed that bag, once again headed for the hospital, he was holding on to some small bit of hope that he may once more carry it out with her in his arms, bound for the peace and comfort of home, as he had done innumerable times in her short life. Another hanger lifted off the rack. A yellow sundress. A bonnet. Pajamas. Delicate hair bands. Lace and tulle and satin and all of the hopes and dreams of a father for his daughter. Each one delicately folded and put away into the darkness of her bag. Sobbing, he had no business here now. His reason had passed, and his heart willed him home.
I stood behind that glass watching, awed, sorrowful, knowing that I could not truly grasp the weight of the loss of a child. I stood and witnessed love in its ultimate purity. Yes, there was beauty in that terrible moment. There was a child — born dying — who was loved intensely each moment she lived and each moment she died. No doubt, the pain was unbearable, and the tragedy of her life will never leave her parents’ hearts, but peace was there nonetheless. Love and peace stood in that room along with death and heartbreak. One cannot exist without the other.
That is how I learned how caregivers bear the burden of watching patients, people, children, die over and over. There is beauty in it — love in every moment. Your heart can withstand unthinkable tragedy and suffering and loss when you see this. Heartbeats will keep coming, again and again.
With the tenacity of hope and love and understanding — ping.
Reprint, from an article I wrote in 2018.