Spirit: Remembering What Matters
The Best Doctor: Life and Death in an AIDS Ward
By Naomi Mendelsohn
Kate Scannell is no stranger to death.
As a physician in an Oakland, Calif., AIDS clinic from 1985 to 1990, Dr. Scannell witnessed plenty of the gruesome and disfiguring deaths that were the calling cards of AIDS in the early days of the epidemic.
Like any good physician fresh out of academia, Dr. Scannell was armed with cutting-edge scientific technology to battle AIDS and its unknown, unseen forces. No lesion went undiscovered. No sarcoma went unturned.
But it didn't take long for Scannell to learn that an emaciated patient, riddled with lesions and sores, doesn't always want to get hooked up to tubes, drips and IV bags to survive.
Dr. Scannell chronicles this lesson, and many others, in her new book, The Death of the Good Doctor: Lessons from the Heart of the AIDS Epidemic.
According to Scannell, the impetus for the book was to remember a time and a place that no longer exist.
"I wanted to write a human history of AIDS through the lives of patients and health care workers," says Dr. Scannell. "I wanted to give witness to the early epidemic through the way it was lived out in human lives."
Though reliving all these traumatic and intensely personal relationships was not easy, Scannell naturally gravitated to storytelling.
"Being a physician for 20 years, I have talked to thousands and thousands of people," says Scannell. "I'm lucky to have heard all these stories. It's great to feel a common thread amongst people."
While other people's memoirs may tend towards the fictional, Scannell's book is rooted in the history, fact and faces that haunt her.
"Some of the patients in the book live in my thoughts and my heart pretty consistently over all these years still," says Scannell. "I carry them so fondly in my heart. "
But her heart is not the only place where her patients live.
"I was notorious as a doctor for dictating medical records that were extremely lengthy," explains Scannell. "I was actually called into my boss's office once and told to curtail the length of my dictations because they were taking up too much of the transcriptionist's time."
Physicians typically dictate one, maybe two pages of notes; Scannell's regularly weighed in at 20 pages. They were so lengthy, in fact, that people around the hospital referred to them as "Scannellian Dictation."
"One day the transcriptionist came to me and said, 'I miss your stories,'" recalls Scannell. "So I went back to dictating them the way I used to."
What was in these lengthy mantras, you might ask? Aside from the usual medical comments, Scannell included myriad personal comments and an extensive social history of each patient.
When Scannell left the ward in 1990, a big red crate of patient transcripts left with her.
For the next five years, Scannell literally lived and worked around the crate it sat smack in the middle of her workroom. It was not until 1995 when, at the suggestion of a friend, Scannell decided to face her past. The crate had been unopened, unmoved and unchanged since 1990 when she left the AIDS ward.
But this box was far from dormant; it contained all Scannell's patient records, exquisitely detailed and lovingly dictated. These records served as the foundation of The Good Doctor, and, in true Scannellian style, were so detailed, that one entire story was taken verbatim from her notes.
As well documented as the stories were, the writing and resurrection of lives was no simple task.
"Throughout the long night, I drew my stories and records from the crate, one by one, touching each of my patients once again," writes Scannell in the prologue. "There was Lana and Jay and Susan and Curtis and Elton and Marvin ... I opened the black canvas journal in which I had recorded the day-to-day deaths on the AIDS ward. From it, I read each name aloud in the darkness beyond the small circle of overhead light illuminating my boxes. Each name felt like an invocation, a lamentation, a witnessing of someone's life."(4)
Of the hundreds and thousands of patients she knew, Scannell chose just 16 to represent the face of AIDS as it looked in the mid to late 80's.
"It was difficult to decide which stories to include," says Scannell. "I decided to add certain stories that brought into focus certain aspects of the early epidemic."
One of the stories, "Up on the Roof," depicts Sharon, an IV drug user, whose desperate threat to jump off the hospital roof portrays the disenfranchisement of AIDS patients. Sharon represented the myriad patients who were entirely disconnected from their lives, their illness and the world around them.
Other stories honor the unique trauma felt by the gay population at the onslaught of the epidemic.
"There is the story of a young man whose mother came to the hospital hoping he had died before she came," says Dr. Scannell.
Scannell saw this story play out over and over again: a gay man who moves to the Bay Area after his family evicts him.
"Essentially, they suffered their illness here, far away from their homesteads," says Scannell. "Their removal from their families was so poignant at their deathbeds."
No matter how many of her patients' deaths she attended, no matter how much sickness she had seen, nothing quite prepared Scannell for her own diagnosis in 1996 of uterine and ovarian cancer.
"I had spent five years with death being a very regular occurrence," says. Dr. Scannell. "I wasn't reading about death, hearing about death or standing on the opposite side of a machine in the ICU. I was having a very personal experience with it. No matter how close you've been before, there's always a little veil separating you."
Though Dr. Scannell had been a pillar of strength for thousands of patients, news of her own disease was a shock that crumbled her strength. She received the diagnosis just hours before embarking on a trip to Europe to kick-off and celebrate a hard-earned yearlong sabbatical.
"I was looking forward to the trip for so long," recalls Scannell. "It was peculiar to leave the house for the airport right after the diagnosis. I was in a timeless place. I barely remember the trip to the airport or the plane ride. I was literally suspended, physically and mentally suspended."
Fortunately the love and support of colleagues and friends helped her through the intense cancer treatments. She has been in remission for over three years. Scannell's personal battle with disease as well as her experiences on the AIDS ward have given her special insight into humanity and human life.
"I think the details of a person's story make life interesting and allow people to connect to this story in unique ways," says Scannell. "But there is this commonality: How we choose to connect or disconnect. I choose to connect as much and as often as I can."
Naomi Mendelsohn is a content editor at savvyHEALTH.com.If you have questions or comments, she can be reached at naomi@savvyHEALTH.com.
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