The Storm of Chronic Illness
I survived two powerful tornadoes in my lifetime. When I was a kid, a violent tornado devastated my hometown in Kansas. Ironically, our family lived in “tornado alley” without a basement or storm cellar. On that fateful night in 1973, our family ran out into the spiraling wind and pelting rain toward hoped-for safety in our neighbors’ basement across the street. My palms still sweat when I recall banging my fists frantically on their front door to wake them. Thankfully, we all survived the storm and our home was spared damage, but this traumatic experience left me trembling for years at the mere prediction of rain.
The second tornado in my life appeared suddenly and incomprehensibly from clear blue skies when I noticed piercing pain in my shoulder joints. As the warning winds of disease increased in velocity, damage appeared: my fingers were so swollen I couldn’t grip a toothbrush and the bones in my feet felt like they’d been crushed with a sledgehammer. After months of tests, treatments, and anxiety, the tempest was diagnosed as rheumatoid arthritis (RA), an incurable autoimmune disease. Although the funnel cloud that heralded this diagnosis has long since passed, I also continue to live with the aftereffects of this tornadic event.
What made the storm of RA (the disease) more challenging for me was the lack of support for the spiritual aspects of my illness experience. I’ve learned that diagnosis with an incurable condition often leads to spiritual struggles, beginning with the question of Why? In turn, spiritual distress threatens our ability to cope with pain, our resilience in the face of ongoing losses and uncertain prognoses, and our sense of well-being.
The 1939 classic film The Wizard of Oz tells the story of another Kansas girl who survives a tornado. This story works surprisingly well as a metaphor for the chronic illness journey. Dorothy Gale is the patient; the Wicked Witch of the West is disease personified; Glinda the Good Witch represents Dorothy’s spirituality; and the Scarecrow, Tin Man and Lion are other patients with chronic conditions. As Dorothy and her companions travel along the Yellow Brick Road, they provide many insights into a world where illness colors all their experiences. Using this metaphor has given me strength on my journey. You can learn more about the Yellow Brick Road of chronic illness in my book.