Thanks Boss! - A Tribute to John Carpenter

Patient advocacy, you never know when and where it might happen. Case in point, last weekend I attended a “Celebration of Life” for John Carpenter. John gave me my first full-time, year-round job as a delivery driver for Edward’s Greenhouse. Up until then I worked seasonal jobs, Bogus Basin Ski Resort during the winter and some version of mowing yards for various entities around Boise during the summer. Unfortunately, Carpenter was diagnosed with Vexas syndrome which is a rare (it’s believed that there are only around 150 known cases in the world right now) and deadly inflammatory disorder. Vexas syndrome was the reason I was attending the Celebration of Life for John.

Before I talk to you about the patient advocacy portion of the celebration, I thought I would introduce you to John. I did not know or realize this at the time, John and his wife Karola was my first introduction to the power of human centered problem solving. At the time this was still considered “customer service”, as I will hopefully express John was so much more than just great customer service.

In the flower business good customer service is providing an arrangement or plant that is equal to the power of one’s credit card. If you have $100 to spend, you get $100 worth of plants and flowers. Due to the beauty and power of flowers, even an “ugly” arrangement still has a certain amount of WOW. John, who was widely considered to be one of the best florists in the country, didn’t have many bad days designing which meant there was a fair amount of pressure on me to deliver his product in the same WOW condition it was created. Now the power of one’s credit card was how most shops provided good customer service.

For John, the power of one’s credit card was a secondary concern. The foundation of his human centered problem solving often revolved around sitting at a table with a good bottle of wine or plate of food and discussing life. Not so much his life, he was always more intrigued with the person sitting with him. As the saying goes, John never met a stranger in his life. Every dictionary should have a photo of John as the definition of active listening. Not only would this give John a better understanding of what flower would work best for the person receiving the gift, it also gave him a better understanding of the why. Was it for an anniversary, birthday, sympathy, seduction, or apology (forgetting an anniversary or birthday for example). “Work best” and “why”…sounds like a great foundation for designing for patients if I’m not mistaken.

Now that you have a better idea of who John Carpenter was, lets discuss Vexas syndrome for a moment.

Vexas syndrome was first discovered in 2020 by a team of NIH researchers. It is a rare and deadly inflammatory disorder with varying symptoms like anemia, recurrent fevers, blood clots, painful rashes, and shortness of breath. These symptoms often overlap with other autoimmune and inflammatory diseases. This makes Vexas hard to diagnosis.

Currently there is no known treatment protocol from what I understand. John’s doctor prescribed high dose steroids in the hopes of controlling the inflammation. As anyone who has been on a high dose steroid protocol will tell you, John spent the last months of his life with a strong steroid high with a huge appetite. This is often referred to as the pred monster.

Despite being on the pred monster, John had the opportunity (not sure if that is the right word) to plan his own celebration of life before he passed away. From what I gathered, this meant he choose everything from the music played, speakers, wine and beer selection, the location, and of course the flowers. It only makes sense for the iconic floral designer to pick his own flowers.

As part of the celebration, John asked his doctor, Dr. Waj Nasser, to speak. Dr. Nasser opened with a joke; he had John’s permission to take about his medical condition so there was no HIPAA violation. As a chronic patient, I found it funny at least.

After the joke, Dr. Nasser told us a couple of stories about John’s various symptoms which included pain and labored breathing. At one follow up appointment, apparently John was barely breathing but was more interested in discussing Dr. Nasser’s family than he was his own medical issues, another insight into John. Dr. Nasser closed by talking about how relieved John was when it was finally confirmed that he had Vexas syndrome.

Most people at the celebration were someone shocked, surprised, or some combination of both at the news that John was relieved. Not me, I understood. I also had this thought. What John, and pretty much all chronic patients go through, is like having a college course that you work your ass off for but never get a satisfactory sense of understanding of the material until exam time. Yes, you understand what is happening in lecture and can complete the homework but there is always a voice of uncertainty in your head until you get that A on an exam. For a patient, experiencing the never-ending battle of symptoms for which you can battle through is the “working your ass off” portion. Surviving the symptoms is like understanding the lecture or homework but never having a true understanding of the material until you get an official diagnosis. The diagnosis is equal to the relief and comfort of an A on an exam provides. As it is with an A on an exam, a diagnosis is a positive chapter in a patient’s story. It is the point where a patient finally feels like they belong, they are no longer alone in a classroom full of complex symptoms.

I’m glad John was able to receive that understanding and relief a diagnosis provides before he passed away. To many patients don’t get this relief. After a life lived helping those around him feel less alone in a world that loves to forget individuals, John earned an A in the classroom of life. I would also like to say “thank you” to John, you provided me with the foundation necessary so I could understand and work towards the value and necessity of human centered problem solving. I’m a better person and patient advocate because you decided to give me a chance all those years ago.