Talk to someone who has suffered from chronic illness, and you are likely to hear just the negatives: pain, isolation, fatigue, stigma.
But talk to Rabbi Elliot Kukla, who experienced all of those for three years when his Lupus flared up, and he will describe his illness as “a nuanced, complicated experience that’s neither wholly positive or negative.”
That nuance is on display in “Bed Life Paintings,” his artwork being shown at Kehilla Community Synagogue. During his flare-up, Kukla was mostly bedridden and forced to slow down dramatically. But one thing he felt he could still do is paint. “It opened my creativity by forcing me to find new ways to express myself,” he said.
“Bed Life Paintings” will be at the Piedmont synagogue from Jan. 5 through Feb. 28, with an opening reception Jan. 6 from 4 to 6 p.m.
The illness “helped me slow down my life in really unique ways that I never would have done without being sick, and forced me to be more vulnerable and interconnected with other people,” he said.
Kukla, who made headlines by being the first openly transgender person to be ordained by the Reform movement, is a rabbi at the Bay Area Jewish Healing Center. For almost a decade he has served those who are ill or dying and in need of spiritual solace. He has always been drawn to this particular mode of rabbinical service, previously working as a chaplain at UCSF.
Spending so much time with others who were sick prepared him in some ways for his own experience of illness from 2013 to 2015. From them he learned how to be OK with needing help, even with the most basic of tasks.
“My clients had role-modeled that for me,” he said. “I had to break down the distinction between me and my clients, and when I was well enough to return, to not have that distinction but really see us all as part of this interconnective web of caring.”
Lupus is a chronic autoimmune disease that can affect the body in numerous ways and can flare up at any time. Symptoms that Kukla dealt with included extreme fatigue and the inability to form words for stretches at a time, leading him to spend most of his time in bed. “As sick and disabled people, we spend so much time in our bedrooms and I see these rooms as sacred altars of our survival,” his artist’s statement says. “My paintings of bedrooms are dreamlike and heightened in color and intensity to express my vision of them as sacred places where we live, rest, and dream.”
After two years Kukla was able to return to work. But he continued painting and then began to depict the people he visited. In stark contrast to how most individuals live fully out in the world, he said, those who are disabled or ill are often limited to their bedrooms.
As a rabbi visiting the sick, he would always observe what they had in their bedrooms to get a better sense of who they were and what their needs might be.
“The bedroom can be a sacred altar to one’s life, a place of enormous value that is not valued in our culture because we don’t value people with illness and disability, and therefore we don’t value the spaces where they live their lives,” he said. “Often when a sick room is depicted, it’s a depressing place, but they can also be filled with magic and beauty. I wanted to capture how they can be imbued with life because people are spending so much time in these places.”
Kukla said he was an artistic child who always drew and painted, but in his adult years he didn’t make much time for it. He appreciates how his illness has given him the space to return to this childhood pastime, and he believes he will continue to paint throughout his life.
“I’ve made more art in the last four years since I’ve become chronically ill and disabled than I had since childhood,” he said. “I could not have imagined having such an active, creative process inspired by my professional life. It’s been a palpable gift of being sick to have developed such a rich and full practice in my life that I never would have had space for.”