Abstract
Before entering Jae's room, I mentally prepared myself and tried to exude composure. In retrospect, having never been in the presence of a dying person, I was unaware that Jae was in the final days of his life. During the visit with Jae, the doctor spoke to his mother who was beside his bed in a reclining chair, her baseball cap pulled low over her brow, partially obscuring the incredible sorrow and pain written on the contours of her face. The doctor's ability to comfort became apparent as she spoke kind supportive words to this despairing mother and coaxed out a bright smile hidden beneath the mountain of her anguish. The most important lesson I learned from this encounter was that even in the face of hopelessness the power of the doctor's humanity—her heartfelt words of empathy—helped to improve a gloomy and bleak situation, illustrating that a little bit of light can dispel a whole lot of darkness.
There I stood—young, looking forward to a future in medical school, and, most importantly, healthy—over this person only two years younger than me, whose body was riddled in pain, reduced to complete reliance on life support. It seemed like his soul was struggling to break free from its physical confines, unable to speak but still making guttural noises that reminded us of his continued awareness. Before leaving, the doctor gave Jae's mother a big hug, demonstrating that medicine is equally a practice of compassion and science. Although it uses no resources and takes no medical training to perfect, a warm embrace is at times the most effective form of communication when words are insufficient. It creates a lasting bond between the caregiver and the patient and his or her family. As we left, I turned to Jae, and although knowing that he could not see me, I waved to him and smiled. I did not want to leave the room without giving him recognition. I wanted to acknowledge and respect his existence as a fellow human being.
Although I am not yet a doctor, nor even a medical student, I've already had the life-changing experience of becoming acquainted with a young patient who was terminally ill. Jae was the first patient I encountered during my initial shadowing experience with the Palliative Care team at St. Jude Children's Research Hospital. I had the opportunity to meet this young man while shadowing the Quality of Life division, where I hoped to learn about the provision of hospice care to children dying from cancer.
I was fortunate that my experience coincided with the Day of Remembrance, a time when bereaved family members return to St. Jude to commemorate their children. I met several parents of children who died before their first birthday when healthy children are usually reaching the milestone of taking their first steps. It was a humbling and somewhat unsettling experience perusing the poster presentations memorializing the lost children, facilitating conversation by asking questions about specific pictures or quotes. I had to quickly overcome my apprehension of speaking to strangers about devastating experiences. Once I mustered up the nerve, it was no longer awkward or uncomfortable. I learned that parents love to talk about their deceased children so that their memories are never forgotten. Through interacting with the parents and affording them the chance to talk about their children, I was hopefully able to have a small positive impact on their day while concurrently learning about the extreme adversity people go through and the incredible human spirit necessary to overcome.
Parents bereaved by the loss of infants had comparatively fewer stories to share than those whose children lived longer; yet, they nonetheless left incredible impressions on their parents and immediate families. Throughout my conversations with these parents, I internally began to question: how do we respectfully memorialize children whose lives ended before they had the chance to establish a distinctive identity for themselves and are now frozen in time as infants? I wondered how do parents think about the peculiar nature of their infant if the baby never had the opportunity to speak their first word, take their first steps, or develop relationships with others. My faith informs me of the unique and sanctified essence of each human life; therefore, I conclude the amount of time the parents had with their departed children is insignificant compared with the intense bond formed by their powerful connection to one another. The lasting lesson I learned from the parents at St. Jude is that the impact of a person's life cannot be measured by its length but by the enduring effect that person continues to have on those who loved them.
Although it was not officially part of my shadowing experience, I decided to return the next morning to participate in the second part of the Day of Remembrance. I felt like I had become personally involved in these people's lives and I wanted to see the whole thing through. I listened to a panel of bereaved parents speaking bravely about how palliative caretakers made a difference for them and what they could do in return. Just before the closing balloon release ceremony, I bumped into one of the doctors I had shadowed the day prior, and he informed me quietly, “Jae passed away last night.”
Although shocked, I felt my purpose for being there was to release a balloon for Jae since nobody else was there to release one for him. It was my first shadowing experience, and yet I found myself momentarily mourning among a group of bereaved families, all suffering the loss of a loved one.
Each rubber ball of helium had a unique character embodied by different hues—and each took its circuitous route up to the clouds and the Heavens. But the farther they rose, the more they appeared to converge on the same point of the sky until hundreds of colorful spheres coalesced into a pinpoint and faded into the infinite blue.
The visceral experience of watching these balloons rise connected me directly to the pain of the surrounding families and the shared mystery of what each life means and where we all go in the end. I lingered for quite some time as the crowd dispersed, pondering how this day would fit into the context of my life. Eventually, having realized that every second is too valuable to waste, I concluded that only time would tell, and moved on to cherish the next transient moments that will collectively constitute my life.