Recently I took part in a Tim Lowry ALS panel for occupational therapy (OT) students. As panelists we answered many of the questions you might anticipate about how OT has improved our lives with ALS. I was happy to tell the students about pencil grips, rocker knives, and splints. The OT professor specialized in hand therapy and was eager to help with my current conundrum: buttering toast.
The question that most surprised me was directed to Tim Lowry who communicates via eye-gaze technologies.
“How do you prevent giving up when there is limited treatment and no cure for ALS?”
Fair enough. We tell the audience that we are an open book. Ask us anything. Still, it’s not a question in the same league as how to butter toast.
Youthful students, given permission to be truly curious, will expose the elephant in the room.
“How do you face existential challenges, for real, in the day-to-day?”
Tim’s poised response revealed the intentionality of a reflective life. He has learned to nurture his mental and spiritual well-being to support the consequences of his on-going physical decline.
ALS poses its unique challenges to be sure. Our motor neurons are dying, and it turns out that we really need healthy motor neurons to get dressed in the morning.
One option, I suppose, would have been to answer the youthful questions with a question: “How do you face the existential? How do you keep from giving up?” Life is chock-a-block full of existential opportunity: our present climate crisis, raging gun deaths, a loved-one’s eating disorder, a recurrent major depression, a father with ALS. How do any of us live with uncertainty and ambiguity in our lives?
I wonder, now that I have ALS, am I meant to understand more about managing existential crises? I mean, I have stuff to do. I have a garden to weed and water. I have a Tim Lowry panel to prepare for. I have asparagus to blanch for lunch with Zach and Isabelle.
Here’s one thought. What if we allowed our present reality to become sacred? Fighting for climate justice and gun safety. Being with a friend who is struggling. Learning to put your socks on with one hand. Blanching asparagus. What if we approached all of it with reverence?
“We remember the sacred by our reverence…This is the esteem we extend to the reality revealed to us. Jesus didn’t abandon his reality, he lived it. He ran away from nothing and sought some wise path through everything. He engaged in it all with acceptance. He had an eye out always for cherishing reality. A homie, Leo, wrote me: ‘I’m going to trust God’s constancy of love to hover over my crazy ass. I’m fervent in my efforts to cultivate holy desires.’ This is how we find this other kind of stride and joyful engagement in our cherished reality. The holy rests in every single thing. Yes, it hovers, over our crazy asses.”