The Death of Stephanie Lee: A Story Of Pain, Hope, and Miracles
Maybe the miracles available to everyone in the story, and everyone who reads the story is just that: friendship, loyalty, and love. Sometimes, those are the only miracles we need.
I want to write about an article I read the other day that took the breath out of me, that left me shaking in tears, that moved me beyond any feature or long-form piece I had ever read. It was a piece written in Esquire on July 27, 2015 by Tom Junod, about the death of Stephanie Lee, who tragically died of cancer on February 4, 2015, despite the attempts of innovative personalized medicine's attempts to save her.
Junod and his editor, Mark Warren, broke nearly every journalistic rule in the book in their 10-year-long immersion in trying to help Stephanie survive. They first met Stephanie in 2005, when Stephanie grieved the loss of her husband, National Guardsman, Terrance Lee, in the Iraq War. Mark talked to Stephanie every day, and was there with her every step of the journey.
"We wanted to live it rather than simply connect it...We wanted to give Stephanie access to the cutting-edge medicine generally available to rich people...But only Mark and Stephanie took the walk all the way to the end."
While the piece is a critique on the limits of trendy personalized medicine in cases where patients just need conventional care, the article is also a story about where the miracles, in a time when everyone who cared for Stephanie Lee somehow failed her.
"That the only miracles available to her turned out to be the human and ancient ones—friendship, loyalty, and love."
When medicine, science, and all the best care in the world don't help, as was in the case of Stephanie Lee, what does? "We tried to save Stephanie Lee. We tried to inspire and challenge and prod and browbeat others into doing the same...who did what they thought was best for her and came so close to success that they -- we -- each wound up doing our part in an annihilating failure." At the end of the article, despite all the exceptional and groundbreaking research from the some of the best scientists in the world, all one can focus on is the ironies, that all she needed was a doctor.
In terms of health, medicine, and the treating of a disease as devastating cancer, what Stephanie Lee taught doctors and researchers that the old-school way of treatment was there for a reason. "the standard of care—surgery, chemotherapy, and radiation—is not going to give way to personalized medicine without a fight."
The irony is the faith Stephanie had in science intertwined with the faith she grew up with, "dependent on forces bound by necessity and ultimately indifferent to the human need for miracles." Even though she was no longer a churchgoer in the midst of her suffering, she called upon the Lord and her Bible often. "Her faith never took the place of her trust in what was being done on her behalf at Mt. Sinai hospital; in fact, it intensified it, gave her belief in science as a religious dimension" When her pain left her immobilized, what kept her going was seeing the pastor of her old Pentecostal church. Although she could barely move, when Stephanie recognized him, she rose to her knees and threw her arms at him, and accepted his blessing with tears.
In the words of Junod, "This is a story about decisions and their consequences. It is a story about hope and its consequences. It is a story about promises, scientific and otherwise, and about journalism and its limits."
So, what are the miracles? It may seem cliche for Junod to write that the only miracles that Stephanie experienced were friendship, loyalty, and love, but that isn't what he's saying directly. Throughout the whole piece, he attests that Stephanie also imparted miracles upon the people who were with her and watched her as she suffered and died. As Junod writes at the beginning of the long article, Stephanie had a gift that she honed over a lifetime, a "daunting gift for seeing people and situations plain," and a gift for asking and giving love.
The other Esquire journalist who worked on the story functioned much more as a journalist, and much more as a close friend. Mark helped Kamri, Stephanie's daughter, with her homework when she had trouble. He helped Stephanie trade in her car, asked credit-card companies to forgive her debt, and persuaded her landlord into giving her more time to move. When the metal stent in her intestine failed, Mark drove her a hundred miles per hour, 94 miles, Ocean Springs to New Orleans to get care.
"There was simply nothing he wouldn't do for her or her daughters, no fight he wouldn't take on, no errand he wouldn't perform, no e-mail he wouldn't write, no phone call he wouldn't answer, no matter what time of day or night...his devotion represents some kind of absolute."
Stephanie endured pain, a lot of pain, but she also had hope, and that made Mark Warren and Tom Junod reconsider their mission. They worried that she had hope because the two journalists and scientists gave her hope and insisted on hope, and that made them reconsider what they were doing. "You don't have to do this for us," they told her. "You don't have to keep on fighting because you think you owe us something. You don't owe us anything. We owe you." They dreaded, each time, telling her to hold on to hope, because help was on the way, and that made it all the more painful when, on Thanksgiving morning of 2014, she texted Mark, "I can't do this anymore I can't take this pain. I'm sorry, Mark."
And after that, Mark flew down to New Orleans to check on her in the hospital, reporting that he "had never seen another human being in such pain, for it was not just pain with no end, it was pain with no limit. She writhed with silent screaming, and he became the haunted figure roaming the empty hallways, looking for someone to offer Stephanie relief." Before a surgery, Mark remembers vividly Stephanie moaning in her sleep in delirium: "I'm doing this for my kids! I'm doing this for my kids!" And even amidst all this pain, in the period two months before the end of her life that she stayed at Mt. Sinai Hospital where she kept asking: What do I need to do?
The story ends with Stephanie Lee going home, back to Ocean Springs, Mississippi, with herself and her team at Mt. Sinai, in some way, in exhausting, accepting the inevitable. Stephanie told them, her voice softened, that "I need to go home to be a mother to my baby." A researcher flew Stephanie home to Mississippi in an air ambulance on January 29, 2015. Mark was with her. An ambulance waited for her at the airport, ready to take her home.
Junod's piece, and all the other stories he and Mark Warren wrote about Stephanie Lee and her experience in their lives move me beyond words. It isn't a story about suffering, but rather a story of survival, and kudos to Tom Junod and Mark Warren for the role they played in helping and capturing that story.
Maybe the miracles available to everyone in the story, and everyone who reads the story is just that: friendship, loyalty, and love. Sometimes, those are the only miracles we need.
