In the fall of 2013, I got sick. Like most people who fall ill, I assumed I would get better. Weeks, then months, then years passed. And though there were plenty of ups and downs, I did not recover.
Most of us are raised to believe that illness is temporary. We are sick only as a detour on the way to a return to health, or as a part of dying. But, for increasing numbers of us, illness is not a stopover but a home. Many well-meaning people (including some of our loved ones, caregivers, and medical practitioners) may urge us to fight for an elusive cure and get back to “real life.” And yet the “chronic” in “chronic illness” means that we are probably not going to get better; our life is “real” already. While fighting for an unreachable recovery, we may miss years of our life in the present tense.
As life expectancy grows, the number of Americans who manage an incurable chronic illness also grows; according to the Centers for Disease Control and Prevention, treating people with chronic disease accounts for 86 percent of our nation’s health care costs.* Diabetes, most autoimmune diseases, and mental illnesses may wax and wane, but they will never fully go away; HIV/AIDS, many cancers, and countless other once-fatal diseases can now often be managed for years. And yet, the persistent view that illness is temporary continues. Those of us with a chronic illness occupy an in-between space in society — neither returning to health and “productive” activities nor dying. We live in the cracks and crevices, rarely seen on television.
I have a lot of experience with inhabiting in-between spaces. I am one of a handful of transgender rabbis. But nothing prepared me for the outsider status of being chronically ill. Think about this irony for a moment: Approximately 6 percent of American adults identify as transgender, just under 2 percent of the world population is Jewish, and 100 percent of us will get sick. But it is being sick that makes me feel like an outsider.
Much daily life becomes inaccessible to chronically ill people. And although I still work part time as a rabbi, chaplain, writer, and activist, and I am also an artist, husband, and friend, I am frequently asked whether I am anxious to get back to my “life” — as if being ill precludes living. Even in the months when I have been too sick to do anything, my life of being has still been meaningful. As a rabbi-chaplain, I meet countless sick people who are not productive, but who are nevertheless still precious. Even sick and disabled people who are not “inspiring” have a right to exist. To me, a life of illness is another complex and beautiful way of being human.
Considering how much of our time is spent being sick, why is it placed in such an isolated category — separate from the rest of life? Since illness is a far more universal human experience than love, marriage, work, sex, education, or childbearing, why are we not taught the skills of how to be sick? Why are we not taught how to navigate hospitals, how to manage medications, how to control pain, and how to live mindfully with pain that cannot be controlled? In failing to acknowledge and accept the transient sick parts in each of our lives, we disown the chronically ill among us who make a permanent home in the socially liminal space of illness.
Judaism feels differently about liminal spaces. Most of the Torah takes place in the wilderness between Egypt and the Promised Land, and the desert generation never makes it to the latter. At first, those in the desert mostly miss the comforts of civilization: the fish and onions and leeks of Egypt. (Numbers 11:5-6) Over time, the freed slaves notice what remains: companionship, the open desert skies, and the sheltering presence of the divine. Likewise, a chronic illness journey often begins in the wilderness of grief and loss: uncomfortable, unreliable, yet as real a home as any. Only when we accept this wilderness as more than a stopover can we begin to embrace what remains.
There are many ways to build a full life in the desert, and to build a rich life with chronic illness. Some Israelites raged during the entire course of the journey; others built the tabernacle with deft artistic skills; some parented children; and some spent long days appreciating the desert’s beauty. Likewise, some sick people rail against the pain and ugliness, some use it to make art, and others integrate illness as one part of their identities. None of these approaches is better or worse. There is no wrong way to be sick.
The Israelites had no idea where they were going, or what they might find; likewise, a life of chronic illness is one of ceaseless uncertainty. Tomorrow might be a good day filled with ease of movement, or fatigue might make getting out of bed impossible. Being chronically ill means living in between recognized lands, among vast regions of possibility.
Rabbi Elliot Kukla serves San Francisco’s Bay Area Jewish Healing Center, where he codirects Kol Haneshama: Jewish end-of-life /hospice volunteer program, a joint program with the San Francisco Campus for Jewish Living.