Here’s the scene. A renowned oncologist has a stage 4 Melanoma patient as a guest at one of his lectures. She stands before the class. A veritable sea of solemn faces sits behind the life-sucking glow of the laptops before them. The Dr. wants the students to ask his patient the hard questions. In the hopes of improving their future “bedside manner.”
The questions commence. The students are unenthusiastic. They speak in clinical terms. Their faces offer no glimpse of empathy, sympathy, or understanding. They view her with the same enthusiasm as a cadaver. After the third emotionless, flat question the patient turns on them. She challenges their affect. She challenges their humanity. She implores them to see a person, not a patient. In response to her impassioned words, a student flatly asked her how she’s feeling. She then goes off on them as the Dr. watches on in silent agreement.
“How am I feeling?” How are we feeling?” “We’re dying, that’s how we feel!”
“And another thing”, she implored. “When you talk to us try to stop looking so fucking terrified!”
End scene.
The Big C. My kind of show.
Due to my medical history, I cannot help but be very aware of death. I’m not obsessed morbidly. I don’t plan to go anytime soon. Nor, and most important, am I afraid of it. It’s quite simple, actually. I spent so much time sick that it was always there in front of me. So I got to know it.
There are positive takeaways from being mindful of death. It changes how you live, for starters. Facing your own mortality opens the door between “someday I will die” and “when I die”. Suddenly, it becomes a part of your thought process. I think about it from every angle, and I’ve made peace with almost all scenarios. I live with a legacy mindset, always conscious of how I will be remembered. I’m at peace with all of it.
With the exception of a Cancer diagnosis.
That is the appeal of The Big C. It is a brave, unflinching, and honest look at life while facing death. It has it all. Bucket lists, difficult conversations, clinical trials, and experimental medications. Emotions range wildly as we watch Cathy Jamison, played by the always delightful Laura Linney, endure the highs of small victories and the crushing depths of disappointments and setbacks. At the center of it all, she is simply trying to live a normal life, with some mortality-related improvements. I believe it beautifully portrays a loving family dealing with loss. They are slightly dysfunctional and are coping with losing a mother and wife. The true beauty is that the show gives equal treatment to the concerns of both the survivors and the patient.
For the sake of this post, I want to shift focus to the medical aspect. In particular, the challenges of maintaining patient dignity in treatment. That is why I led the story as I did.
I’m very familiar with the patient/Doctor dynamic. In particular, I am very in tune with tone-deaf doctors and Nurses. My experiences have been mostly positive. However, many patients feel like a number or a statistic. They don’t feel like people because Bedside manner isn’t stressed as it once was. How do I know? I was told this by one of my own Doctors.
While hospitalized in 2016 for excessive water retention due to a failed transplant, I was approached by my Nephrologist. He said,
“Bill, you’re going to be here for a few days. If you have the energy, would you do a favor for me?”
“Sure, I’ve got nothing else to do.”
He went on to explain that he had a team of students. By his assessment, they had poor bedside manner. He made quotation fingers as he said “Bedside manner”, so I pressed. He explained that they were very bright and gifted clinically. Still, he was very concerned about their lack of empathy when dealing with patients. I admired that he cared about this, but I was not surprised. After all, he was very good with me.
I asked him what he wanted from me. He explained that he wanted me to tell them my story. Which he knew all about, of course. He said I should not volunteer everything. He wanted me to let them “pull it out of me” due to my natural tendency to overshare. In return, he would give me a certificate for helping out. I was glad to do it.
2 hours later, my hospital bed was surrounded by Medical students. I made it hard on them. I made them pull out of me the things not on their chart. The challenges of being sick for years on end. The financial, marital, parental, and occupational challenges of Chronic illness. I told them as only I could. One of them was in tears at the end, and others were visibly shaken.
My Doctor would later tell me that I was the perfect choice for such a lesson.
Soon after, I was visited by friends. They immediately noticed the new Certificate of Appreciation on my table and asked about it. I shared the story. One of them said, “Brother, you need to start documenting this shit. Write a book, man.” I mentioned that I used to have a blog, maybe it was time to start a new one? The name of it hit me instantly.
Superman can’t find a phone booth. The meaning was simple. I had fight left in me, but I was too weak to find the strength to change into my bullet-proof costume.
This is the same blog, just renamed because eventually I did indeed find my Phone Booth.
People over patients. Bedside manner is everything.
The Tao of Bill 