The Journey
I sat beside R’s bed and laid my hand gently on his forehead. My medical student joined me. R was dying of pancreatic cancer. He was going in and out of consciousness and muttering a few words, at times answering some of the questions and joining us in the conversation. He was ashen, pale, and yet comfortable with the morphine he had received. His two sisters were with him. They were eager to make the most of the time they had with their brother. “We are planning his birthday party. There will be some action heroes. He will dress up as a Superman.”
His sisters were from out of town. This was the first time I had met them. “I cannot believe my brother has so many friends. Doctor, this is a real miracle. We never thought our brother could ever relate with anyone else, show his feelings for others. Thank you so much for taking care of him and allowing us to see all this happen in his lifetime.” Throughout the day there had been a steady stream of visitors coming in to meet R, including former residents who had lived in his program with him, the staff, and others who lived with him now. He had been calling out the names of the staff who had worked with him for the past few years. His sisters tried their best to hold back their tears. As soon as they started to cry, they seemed to be in a rush to bring out the box of tissues and wipe their tears.
I had to remind them that these were the tears of gratitude and that it was okay to cry, to feel all the feelings they were going through. I even gently suggested that they get rid of their tissue boxes. I thanked them for allowing us to serve their brother in the last six years of his life and for us to experience this miracle unfolding in our presence. Death can be a very powerful teacher. In that very moment we were learning an important life lesson.
R (what we actually called him) was a tall man who was close to 75 years old. He wore his helmet, having experienced uncontrolled seizures and falls from the time he was a small child. He had severe disabilities resulting from autistic spectrum disorder. His interests were narrow, and his conversation focused mostly on action heroes and model ships. His room was cluttered with action hero figures, images, outfits, and videos as well as numerous plastic model ships he had spent long hours assembling. More recently, his health had been going downhill, with declining memory and more frequent falls, and he was placed in hospice care.
What his sisters proceeded to share about R and their family was powerful beyond my expectations. It reaffirmed my belief in the miracles we get to experience as health care professionals. It appears that R was the oldest of four children initially raised by their mother. However, she could not nurture or care for the children and was herself struggling with severe mental illness. Their father was often away in the Merchant Marine fleet. R, the oldest, with severe autism and grand mal seizures from the time he was a child, was severely abused and neglected. He had received no medical care whatsoever. His grandparents’ way of dealing with him was to lock him in the closet each time he had seizures.
The four small children were removed from their mother, and a 21-year-old woman became their adoptive mother. In the words of R’s sister, this woman took in four young, emotionally damaged children and saved them from death. However, the psychological damage was already severe. With little ability to relate to others and having endured cruelty as a young child, R started to physically and sexually harm his younger sisters, and they were frightened of him. When the authorities got involved and the children were scattered into various foster care homes, they lost contact with each other. The blame, shame, and stigma even extended to hiding the fact that half of their ancestry was of Native American descent. “You [would] hide this fact and [not] tell anyone if you [grew] up in Oklahoma in those days. [You] let people know you are white.”
I asked that sister what tradition their family followed for end of life. “We don’t have one. Didn’t learn the Native, either. One of the residents who is in the wheelchair is going to read and say something about R in the memorial service. Another resident is going to play her instrument.” I immediately knew to whom she was referring. The woman in the wheelchair was a former nurse who could no longer practice because her mental illness had disabled her. I have served her in various hospitals for the past 16 years, and now she was a resident here in our group home. The woman who was going to play an instrument for them was a nationally acclaimed musician undergoing dialysis for her lithium-induced end-stage kidney disease. Lithium carbonate had helped her avoid repeated hospitalization. Each time I visit her, she has been generous in sharing her music with me. I remind her that because my hearing is failing, every note I hear I cherish, because it will not be long before my hearing will be gone. After all, in this journey of life we are all in the same boat. There is truly no difference between the one who is serving and the one who is served.
I was curious as to how the siblings all found each other. I did not have to wait long for one of the sisters to tell me their story.
I was 15 years old. I was scared to meet my sisters and certainly, Brother R. I got close to the [wife of one of my uncles]. He was sick and dying. She appreciated the help I offered. I thought no one [would] know me if I went to the memorial service. Little did I know that all the family, and even their family dog, [would] show up to this service! It was then [that] this man walked in holding the side rail, wearing the helmet, along with a caregiver. I was not sure, but I recognized him when I heard his voice. I felt everything was turning dark. I wanted to run. The memories of all past cruelty he committed came rushing back. I knew if I left, I [would] never know where the others went. If I [met] him, I [had] some chance of finding out what happened to my sisters. After mustering enough courage, I finally introduced myself. He was eager to talk to me, and he spoke for over one-and-a-half hours. Soon I got in touch with my sisters. One of our sisters had died during our separation. Today, when we meet our Brother R, it gives our children some confidence to see him and meet him. We had to learn to mentally separate our brother from his actions.
That was indeed a powerful lesson, the need to separate the actions from the actor. People can develop deep understanding and practice compassion toward the actor but do not have to agree with the actor’s actions. We can protect ourselves from the actions. We do have a right and a duty to protect ourselves from the actions. The sisters had to protect themselves and their children from the abuse, trauma, and other potential harm from the actions of their brother yet practice understanding, kindness, and compassion toward him. I guess this lesson can help all of us in our daily lives, whether we work in clinical settings or simply interact with one another.
In that moment these three siblings from Oklahoma were my teachers. They were showing me that within one lifetime, this family went from severe emotional damage to grabbing a chance to repair their wounds, reconcile, reconnect, and practice understanding and compassion in their family. I hope they can interrupt the pain and hurt for generations to come.
As I drove back home, I smiled. I thanked R for letting us serve him for the past six years. I thanked the gift of modern medicine that helped R reach a state of mind where he and his siblings could mend their relationships and take care of their unfinished business. The words of his sister came to me: “Doctor, he said that he was now ready to enter the doors of Heaven. He appears to be in peace.” I am sure she was right. I was thankful for all the loving kindness the staff and the fellow residents had shown to R. It allowed him to heal and truly learn to connect with other human beings within his lifetime. I was thankful I became part of this story; what we all did enabled R to move on in his journey.
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Cover: Sure Violet, by Helen Frankenthaler, 1979. Twelve-color etching, aquatint, and drypoint on TGL handmade paper. Gift of Louis J. Hector (1983.113.1). The National Gallery of Art, Washington, D.C.
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Published online: 27 February 2017
Published in print: March 01, 2017
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