600,000 Hebrew slaves left Egypt and only two, Joshua and Caleb, made it to the Promised unfair, but now I view the desert 600,000 Hebrew slaves left Egypt and only two, Joshua and Caleb, made it to the Promised . When I was a new rabbi I found this maddeningly unfair, but now I view the desert generation differently. Though they suffered, they had full lives in the desert. They designed a beautiful Sanctuary in the wilderness and gorgeous Priestly garments; they created new rituals and traditions. Children were born in the desert; they lovingly buried each person who came out of Egypt; they mourned for their leaders.
I’m sure many of the desert generation never stopped longing for the Promised Land. However, I would like to believe that there were others who came to accept the desert and made peace with a life lived under big desert skies with hot, windy days, and cold, clear nights. While the desert seems barren at first, anyone who has spent time there soon realizes it’s full of colors and shadows, winged creatures, plants growing out of craggy rocks, and other surprises.
As we are approaching Passover, I see a parallel between the desert generation and living with chronic illness. Many of us will never reach the Promised Land of a cure, but may be able to rs, even more than the 40 years of wandering, in the wilderness of illness. As life expectancy grows, the number of Americans who manage incurable chronic illness also grows: according to the Center for Disease Control and Prevention, treating people with chronic accounts for 86% of our nation’s health care costs (http://www.cdc.gov/chronicdisease disease accounts for 86% of our nation’s health care costs ). Diabetes, most autoimmune diseases, and mental y; HIV/AIDS, many cancers, and illnesses may wax and wane, but will never fully go away; HIV/AIDS, many cancers, and fatal diseases can now often be managed for years.
We tend to think of illness as a way station to be inhabited for a few weeks or months, not a place in which to make a home; we must readjust that thinking to address the current realities of millions of Americans. As both a person with a chronic autoimmune disease and a rabbi who cares for the chronically ill, the terrain of chronic illness is doubly familiar to me. But like the wilderness of the ancient Israelites, the land of chronic illness is defined by uncertainty and unpredictability, making it an uncomfortable dwelling place.
Many well-meaning people (including some of our loved ones, caregivers, and skillful medical practitioners) may urge us to keep fighting. Fight through exhaustion, we are told, toward the Promised Land of cure; get better and get back to real life, they say. While these voices are often loving, they can also leave us feeling hopeless and alone, as the “chronic” in “chronic illness” means that we are probably not going to get better. Our lives are “real” already. While fighting for an elusive future cure, we may miss years of our life in the here and now. However, an absence of cure doesn’t rule out healing: a life of illness can still be a full and spiritually significant life, not just despite illness, but in part shaped and informed by it. Our tradition teaches, above all, that each human life is uniquely created in God’s image; this includes those of us who are too sick to earn money, go to social events, or get out of bed. Even if we do nothing at all, our lives are unique reflections of the Divine.
At first, the desert generation can only think about what they have lost. “We remember the the fish we could eat for free in Egypt,” they complain to Moses, “the cucumbers and the melons, and the leeks, and the onions, and the garlic. But now our soul is dried away; there is nothing at all.” (Numbers 11:5-6) Grief for this loss plagues the desert generation over ain in their journey, but in time they come to notice that which is alive in the desert: their leaders, each other, the gift of the Torah, the presence of the Divine. So it goes with chronic illness: at first, the loss of activity, livelihood, or identity is all one can pay attention to, and this grief is unending. However, in time one may come to see the unique offerings of illness: a slower pace of life, connection with other sick people, the value of who we are versus what we do, and the possibility for a new, tender vulnerability in relationships.
I don’t mean to “bright side” chronic illness. No one would choose to be sick. It’s a terribly hard place to live, marked by discomfort, pain, economic and physical loss, and loneliness. But it is a real and densely inhabited place. Chronically ill people are not in limbo; we are not on a shelf waiting to be cured. In fact, many of the sick people I know have incredibly full, creative, and deeply layered lives.
I have a client with MS, now in her 60s, who has since age 40. Though she can barely move her body, she has written and self two books of poetry and a memoir, and maintains a poetry workshop for other nursing home residents (who are generally much older and more demented than her). Like many other severely chronically ill clients I have known, she has found a way to imbue her life with beauty. Others bring beauty into their lives by positioning their bed to catch sunlight, or treasuring the softness of their cat’s belly. Others still thrash in the harsh, often ugly desert of illness, finding dignity in that anger and struggle. These people, like the ex-slaves who somehow managed to build the Tabernacle, or those who raged against injustice for 40 years, find their own sustenance through the long desert haul. There is simply no wrong way to be sick.
I like to imagine being in the desert generation, lying on my back in the sand dunes under the huge skies of the Sinai, seeing nothing but vast possibility. 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 and connection, or the pain and fatigue might make getting out of bed impossible. There might soon be advances in medicine that change the horizons of life span, or that day might not come in time. The wilderness of chronic illness is a scary place to live; there is not enough ease, comfort, or companionship here. But there is awe here, the possibility for deep empathetic connections to other people, and the mysterious presence of the Divine.
This legacy resource of the Bay Area Jewish Healing Center (BAJHC) is used by the Northern California Board of Rabbis with permission of BAJHC.