Living with Scleroderma

From Scleroderma Diagnosis to SXSW: How Living with Scleroderma Inspired Ken to Create an Award-Winning Documentary

By June 30, 2023No Comments

When Ken first studied Swiss-German artist Paul Klee in art school, he had no idea that he would be diagnosed in 2000 with the same disease Klee suffered from: scleroderma. And so, Ken created “Angel Applicant,” a documentary on both Ken’s and Klee’s experiences with this disease. This video shared here is an excerpt.

For Scleroderma Awareness Month—which is anchored with World Scleroderma Day on Paul Klee’s birthday, June 29—we asked Ken if he’d share more about this film and how he views research as a critical part of being able to tell his story. Here’s what he has to say.

What compelled you to make “Angel Applicant”, and how did you come up with the overall concept?

I studied the late Swiss-German artist, Paul Klee in art and design school, so I was already an admirer of his work when I was diagnosed with scleroderma in 2000. When it became necessary to take medical leave from my job as an art director at Wieden+Kennedy, (a partner in the film’s production) I began a deep dive into his last works created when scleroderma took hold of him and his life.

It was a way for me to cope during a 12-month course of cytoxan chemotherapy to slow my lung disease progression. I became obsessed and bought every book I could get my hands on, including the multi-volume catalog of his entire works. I stumbled upon Hans Suter’s book, Klee and His Illness, which provided a great historical resource for medical information and how scleroderma affected his art.

After learning that Klee also suffered from the same progressive form, diffuse cutaneous systemic sclerosis, I became really inspired by how it propelled his creativity. Often feeling powerless to the disease myself, I felt compelled to share his story—a scleroderma awareness piece disguised as an art film. I wanted to create a virtual exhibition of sorts that celebrated his massive achievement, all the while giving modern day context to how he was suffering. It was a way that I could use the filmmaking knowledge and creativity that I acquired from my work in advertising to create something meaningful in spite of my illness.

What surprised you most in making this documentary?

What surprised me about making this documentary was how it turned into a completely personal endeavor. A transcendental-like experience.

Initially, I was going to stay behind the camera. A sort of academic investigation where I might follow and document people suffering from scleroderma in the modern-day world, using Klee’s work as a backdrop—a cinematic gallery of both the portraits of sufferers and a curation of Klee’s last works that express very specific circumstances of living with the disease. I thought I might just play the role of an amateur art historian and narrator.

Then I began gaining this very personal connection to his work. The more aware I became of my own mortality, the more I could relate to the urgency in his last expressions. It resonated with me in a much deeper and profound way. For example, one of his human-like angel paintings titled, “Whence? Where? Whiter?” in its blue tones spoke to my own existential crisis. There is a humor and dry wit about his circumstance that I could really identify myself within his art.

So, I started to realize that turning myself into a subject was a way that I could draw upon that, take some liberty to echo the sentiments found in his art. Or in some cases, use the artwork as a commentary for my own emotions. I could be self-deprecating and absurd about my own situation with moments of colorful irony in a way that others might not be comfortable in doing so.

This approach also allowed me to chip away at the story at my own snail-like pace, to be vulnerable and bring the viewer along as my story unfolded over the many years it took to make. Which in the end became a spiritual journey in the truest sense. This was completely unexpected from where I started at the outset.

What do you hope people will take away from this documentary, whether or not they are affected by scleroderma?

I want people suffering from scleroderma to feel less alone, to feel represented in a culturally meaningful way. But for those who are not suffering from scleroderma, I want them to understand the mercurial nature of chronic illness that is often invisible. Pain and chronic fatigue.

Creating this documentary was a huge undertaking because I had narrow windows over the last decade when I felt well enough to work on it. I took advantage of the good days, but there were instances where I had to step away for months at a time to deal with medical obstacles. Days where I was completely useless because of my condition.

Systemic scleroderma has a weathervane quality to it, where suddenly the wind shifts from being at your back to suddenly in your face and pushing your progress in the opposite direction—or even turning you sideways at times. I think in the early stages of the disease, this can be the most frustrating as other people might not see what you are experiencing. Hopefully the film demonstrates this to a new audience to create better awareness.

What questions do you hope research will help you answer? Why does scleroderma research matter to you?

Research is important to me, because 23 years ago my prognosis was something like a 50% chance of surviving 5 years, a 10% of 10 years or more. Those odds are significantly different today with the advancements through research.

My story is only possible because of the many people over two decades that impacted my outcome… the multitude of doctors in multidisciplinary fields, the specialists and the surgeons, the nurses, the medical assistants, the study participants, the administrators, the coordinators, the donors, the funders, the grant writers, the advocates, the patrons—all the different ways scientific studies have propelled progress in our understanding of how to treat (and hopefully one day find a cure for) this disease.

My deepest gratitude to the people who’ve dedicated their lives to unraveling the mysteries of scleroderma. It’s why I am still here to even have the opportunity to share this story.

Anything else you’d like to share about yourself or your journey with scleroderma?

The film has taught me how to become comfortable in my own tightened skin. At least in appearance anyway. The pain is still there to a degree, but what I mean is, how trivial being obsessed with my appearance seems in hindsight from 23+ years ago. Adversity has a way of changing your perspective. Surviving a double lung transplant during a pandemic will do that to you.

My glass is entirely half-full, but more importantly, the water is far more clear than it ever was before. I am more grateful for every moment, for every breath. Three years ago, the idea of winning the SXSW Grand Jury Prize for Best Documentary feature was beyond my wildest expectations. Thanks to all in the area of scleroderma research that made this achievement a possibility.