This year I decided to give up death for Lent. 40 days and 40 nights to put aside any thought about death. It would be like a Death fast. If you can give up chocolate for Lent, why not death. Jesus spent 40 days and 40 nights alone in the desert, fasting and facing down the Devil. By custom, the 40 days of Lent are used for inward reflection to renew and deepen faith. Colloquially Lent means forgoing a vice, perhaps to commemorate Jesus’s time in the desert, perhaps to assuage guilt or shame. It is written that Jesus used his time in the desert to prepare for his earthly ministry. In recent years, I have chosen to alter the tradition of Lent by taking on a new challenge or discipline. I have used the 40 days to explore a practice that might add to my spiritual development. This approach seemed more positive, and less likely to end in failure. I convinced myself that this approach was less about symbolic atonement, and more about embracing God’s presence. Giving up coffee, red meat, or bourbon—all vices for sure–would begin as a well-intentioned sacrifice, and often end poorly. Truth be told, these kinds of Lenten fasts never really did much for me.

Earlier this Spring, our daughter and son-in-law invited Peggy and me to join them for a few days in the high desert of Joshua Tree National Park. The cactus and the Joshua Trees were just coming into bloom. The days offered bright sunshine and radiant blue skies. The nights were silent and cold, with endless stars on cloudless nights. We hiked for hours during the day, awestruck, grasping for superlatives that might approximate our experience of wonderous beauty. Here are Joshua Trees in bloom:

The desert landscape is known for its alure to contemplatives and ascetics. I had always imagined this was largely due to the desert’s silence, stillness, and open space. Joshua Tree taught me about the beauty and peacefulness of the desert. I experienced it as an inherently holy place to be.

This is my first Lent in The Land of ALS. Some might suggest the desert is an apt metaphor for living with ALS, because of a perceived bleakness to both landscapes. I’ll admit, since being diagnosed with ALS, I have experienced a sense of wandering in the desert. Every person has a unique path with ALS. There is no charted course that can be mapped out, like a trail in a national park. In the desert I noticed that shades of brown, beige, and gray carry their own subtle vibrance. I’m guessing part of the reason for that is the paucity of other color. Likewise, I noticed that even the smallest cactus blooms draw attention. In the desert, the blue sky seems bluer. And the sunsets are like no other.

This brings me back to my Lenten fast. Giving up Death for Lent, seemed like it could be a meaningful way for the landscape of ALS to surprise me with rare blooms, bluer skies, and sunsets like no other. 40 days and 40 nights of wandering in a new desert without fear or thought of death. 40 days and 40 nights to experience ALS without looking too far into the future. 40 days and 40 nights to prepare for a new life.