Elorm Avakame: What Marge Taught Me
As a medical student, Elorm Avakame befriends a patient who is dying from alcoholism.
Elorm F. Avakame is a Pediatric resident physician at Children's National Medical Center in Washington, DC. He previously earned a Doctor of Medicine from Harvard Medical School and a Master's of Public Policy from the Harvard John F. Kennedy School of Government. He was also a Sheila C. Johnson Leadership Fellow at Harvard Kennedy School's Center for Public Leadership. Elorm is passionate about health issues affecting children in urban communities and wants to make life better for children on the margins.
This story originally aired on July 13, 2018 in an episode titled “Mortality: Stories about facing death”.
Story Transcript
A few years ago I met a woman named Marge. She had this reddish-brown hair that she cut in kind of like this cute pixie cut that framed her face. She was about in her 40s or so, although she looked much older than that. She was really warm and really sweet so the kind of person that you just want to reach out and give a hug, but also really frail so that kind of person that you wouldn’t want to squeeze too tight.
Marge all in all was an unforgettable woman in my life. I mean that to say I probably will literally never forget her because she was the first person I'd ever known who knew that she was about to die.
Marge and I met in the hospital. I was a third-year medical student and she was my patient, the patient assigned to me. As a third-year medical student I had to spend two years prior studying medicine in classroom from textbooks and so I thought that I had wrapped my mind around death. We talked about death a bunch in class. We talked about what it would be like to lose a patient and how to walk a family through that process.
Actually, by that point in school, I had seen a person who was dead. I'd been with a doctor who was called to pronounce someone brain dead and watched as he shone a light into her eyes, eyes that didn’t have any signs of life.
But this was my third year of school and my first year taking care of real patients and so although I have thought I have wrapped my mind around what death meant, I hadn’t actually known a person who was on their way to dying. But Marge was. She told me so matter of factly.
Years of alcoholism had waged a war of attrition against her liver which was finally surrendering. She wasn’t eligible for a transplant because she hadn’t been able to be abstinent for the 60-day period required to be eligible, and so she was kind of out of options. She tried but she failed. And then so did her liver.
I was a medical student and so my job on the team was to visit her every morning and to check her vital signs and to do a physical exam, things like pushing in her belly to see if she was in pain. Being a medical student is a strange kind of existence in the hospital because you are the only member of the team that actually has nothing of value to offer the patient. You know nothing, you're pretty much just there to learn. In fact, it’s the patient who offers you value, not the other way around. It’s the patient who allows you to learn from their body.
Marge taught me most of what I know about a disease called cirrhosis which is a kind of liver failure that can happen, sometimes as a result of chronic alcohol use. She had so many of the classic signs and symptoms of cirrhosis. Her abdomen was really distended, which means really large and full of fluid. Her skin was permanently staled a dull shade of yellow from the waste products that had built up in her blood. She was often drowsy because of the effect that those same waste products were having on her brain, and so she would fall asleep midsentence and you'd have to wake her up and remind her what she was talking about so she would finish the sentence. In many ways, Marge was like a living textbook.
But of course she was more than a disease model. She was alive, if not for long. In fact, sometimes I would forget that she was sick. Sometimes after we shared a good laugh or she told me a story from her better days, I'd have to remind myself that she was dying.
I had this picture in my head of what dying people looked like, really old, barely breathing, semiconscious. Marge was none of those things and that was bizarre for me. It was confusing and it was frustrating because it felt like she was losing her life because she had a disease that we just didn’t know how to treat yet which had caused another disease that was causing her body to shut down and that just felt so unfair.
I actually often felt guilty leaving Marge’s room because I felt again like I had nothing to offer her. She was opening her private space to me. She, in her kindness, was letting me learn on her body and I had nothing in the way of a cure or even any form of treatment to offer her. I wasn’t even really a doctor, so I often walked away feeling guilty after having been with her. But that changed one day when she asked me for something good to drink.
I should tell you something else about being a medical student which is that one of the most important things to know about the hospital is where all of the snacks are. This is because the senior doctors have gotten used to going without eating but when you're first starting out you are hungry all of the time. So I mention not having had any expertise. I lied. What I did have was expertise about the snacks, the refreshments, which floors had graham crackers, which floors had saltines and the like. This is all critical information.
So when Marge asked me for something good to drink I thought to myself, well, actually I just invented this cocktail out of hospital cranberry juice and hospital ginger ale, which are independently not that tasty but together fantastic.
And so I said, “You know, I just made this cocktail that I think is pretty good. I’m pretty proud of it. I could make it for you if you want to try it.”
So Marge looks at me and she goes, “Jesus, I haven't had a good cocktail in forever.” And we look at each other and we’re like we’re not really sure if it’s okay to joke about alcohol given that she's dying from alcoholism, but then we laughed.
And so now I’m fully in-role. I felt like finally there's something I can do. I’m like, “All right, I’m going to grab a cranberry ginger ale on the rocks coming right up.”
So I go and I grab the cranberry and the ginger ale and I get two plastic cups, fill them halfway with ice. I find that bartenders do this cool thing where, for some reason, as a bartender when you're pouring drinks, you have to pour it from a really high height. So I did that thing too. I cracked open the cranberry juice and poured it from a high height.
So now we've got both of our cocktails and we grab them and we clink our glass, although they were plastic so it wasn’t much of a clink. It was more like a thud. We thudded our glasses and we drank them down. Just before we drank, Marge says to me, “Cheers, to the good life!”
So we drank our drinks and I cleaned them out and threw out the cups and everything. That was the first day that I left her room not feeling guilty. It felt like I had finally found a way to repay the kindness that she had offered me. I finally found something in that brief moment of something approaching normalcy that I could give to her in exchange for everything that she was giving me, and it was nice not to feel guilty.
Our time together went on that way and day after day we developed something of a friendship. I visited her every morning, which was my job, but then I also tried to spend as much free time as I could with her. And she told me stories about her life, and she welcomed me in.
I remember one day I walked into the room and she is flipping through a catalog of dresses. I asked her what she was looking at and she told me that she was trying to decide which dress she wanted to wear at her funeral. She would often say, “I’m glad I get advance notice about this whole thing because most people don’t get the chance to make sure that their funeral goes exactly how they want it to.”
So I sat in my seat next to her bed and we’re flipping through the catalog and we decide on this yellow floral dress because she felt like it went well with her eyes, which were light brown, and I agreed. To illustrate how bizarre this whole exercise was, neither of us remembered to consider that her eyes would probably be closed during her funeral.
Our time together went on this way with more conversations and more cocktails and more morbid funeral planning. Something about the finality of her predicament left me thinking about and feeling that the human weight of medicine and of science more broadly.
I thought about what it took to gather the body of knowledge that I had come to know about her condition, about the cell biologists who discovered what happens to a liver cell when it’s damaged, about the physiologist who charted the natural course of her condition, about the clinical researchers who were developing treatment protocols and parameters. I thought about the fact that all of those scientists’ work was passed down through the ages and found its way into my textbooks and eventually into my brain. And in thinking about that I realized that the highest calling of scientific inquiry is the betterment of human life, that beneath the scientific method is a scientific mission.
I felt the urgency of that mission sitting by Marge’s bedside because I knew that although Marge would be lost that there would be other patients like Marge whose outcomes could be radically altered by the next discovery or the next one after that. And as someone who was becoming a physician, this is what excites me about science, that it has the power to cure disease, that it has the power to change lives, that it has the power to turn tragedy into triumph. I've come to believe that, at its height, science is a service to humanity.
The last time I ever saw Marge, she was asleep. I had worked together with the social workers to find a hospice bed to discharge her to, which means that there was nothing left to be done for her in the hospital and so we were sending her to a home to be comfortable in her final days. I was sad about that but I was also happy for her, in a way. She was in her last moments but she was living them full of spirit and that felt like something.
I was sitting there by her bed and I wanted to wake her up because I wanted to tell her one last joke, I wanted to have one last cocktail. I wanted to thank her for what she taught me which is what it means to walk with someone through their last moments. But she was sleeping peacefully and peace was hard for her to come by and I thought it would be selfish of me to wake her, so I didn’t.
But just before leaving her room for the last time, I stood by her bed, I grabbed her hand gently so as not to wake her, and I was standing there trying to think of something to say that would be an adequate farewell. I couldn’t come up with anything. Suddenly I realized that there was only one thing that made sense to say. “Cheers!”