When the Levee Breaks: Navigating Chronic Illness

By Scott Robinson

An image keeps appearing before my mind’s eye: a dark wave silently topping a levee and spilling over to begin its destructive work.

I know what the image means.

I’ve lost about 50 pounds since I was finally diagnosed with Early Onset Parkinson’s Disease in June of 2019. (I say “finally,” because I was misdiagnosed for years, resulting in two major, and probably pointless, spine surgeries, and an erroneous prognosis of a horrific death within three to five years. You can hear the whole gripping saga here if you like.)

I’ve lost eight inches off my waist so far; single-X t-shirts now fit for the first time in years. I’ve put visible muscle onto my arms and legs, and resumed a modified yoga practice. I take my dog, Murphy, for walks the woods several times a week, maintain a regime of stretching and weight training I began in the rehab hospital after my second surgery, and work a heavy bag my wife and children hung in the small boxing gym they built for me in a corner of the basement.

With all this hard work and improvement in my level of fitness, you’d think some things would be getting easier. That’s what’s supposed to happen as you get stronger, right? Things get easier, so you up your game.

But that isn’t happening.

Every time I take Murphy to the woods, the hike up from the creek valley has me sweaty and out of breath before I’m halfway to the park entrance. Every time I walk to church or to the farmers’ market, I have to sit down and rest.

Grocery shopping tires me out. Every time. None of it ever gets easier.

Which tells me something I really don’t want to be told: I am barely keeping pace with the progress of the disease; in fact, the disease is gaining.

My medication runs out of oomph earlier all the time, leaving me a longer period of feeling like a rusty Tin Woodman in need of an oil can before my next dose. The cramping in my left toes that was the first symptom of the slow onset of the disease has spread to my right foot. After spending a couple years collecting musical instruments I could play with my right hand alone, I’m now noticing that the loss of fine motor dexterity that has long plagued my left hand is encroaching on my right.

When people remark on my changed appearance and ask if I’ve been working out, or pull over to offer me a ride to somewhere I am walking to, I tell them I’m in a “use it today or lose it tomorrow” situation—which is true, so far as it goes. But the whole truth is that I’m in a “use it today, lose it next week in any case” program. No matter how strong I get, some day the medication is going to stop working, the exercise is no longer going to hold the disease at bay, and I’m going to be back in a wheelchair, struggling to find a comfortable way to sit.

Some day, that dark wave is going to crest.

Years ago, I wrote a piece for Elephant Journal on Andres Serrano’s infamous “Piss Christ” photo, which shows a crucifix submerged in a jar of the artist’s blood and urine.

This photo prompted angry demonstrations during exhibits, and was eventually vandalized. But having worked overnights in a group home for multiply-disabled young women—a job involving a lot of changing wet sheets and replacing menstrual pads—I thought the photo (irrespective of whatever the artist originally intended) a very astute piece of Christology: God submerged in the down-and-dirty of human bodily existence.

One of the commenters on the blog remarked that the photo was very Tantric, and, not knowing what she meant but reluctant to say so, I agreed with her in an oblique way. Years later, I read Towards a Christian Tantra: The Interplay of Christianity and Kashmir Shaivism by John DuPuche, a Catholic priest who has made a lifelong study of the Tantric Shiva religion.

DuPuche explained Tantra’s focus on quelling desire and aversion through practices which, depending on which branch of Tantric Buddhism or Shaivism you study, can be remarkably intense—eating cat feces, for example, or drinking a cup full of wine, blood, meat and various bodily fluids specially designed to appall the Shaivite or Buddhist seeker. Then he said something that made the blog reader’s comment suddenly clear:

Jesus is the one who does not recoil from anything.

Not from tax collectors, not from sex workers, not from foreigners, not from lepers, not from “unclean” foods, and, ultimately, not from public execution as an Enemy of the State. That’s why “Piss Christ” is Tantric: it puts the triumph over aversion front and center.

I am trying to cultivate that same blend of courage and equanimity in the face of the inexorable progress of my disease.

I’m not holding out any vain hope of recovery, chasing down clinical trials or praying for a miracle. I think the time I have left is better spent preparing myself to face what is to come without disquiet or aversion, and attending to my actual life as I live it, and not to some desired, longer and more comfortable life in my head.

A small group from my church whom I Zoom with regularly to talk about Scripture, etc., was considering Ignatius of Loyola’s classic prayer, Anima Christi (“Soul of Christ.”) Here is a modern adaptation:[i]

Jesus, may all that is you flow into me.
May your body and blood be my food and drink.
May your passion and death be my strength and life.
Jesus, with you at my side, enough has been given.
May the shelter I seek be the shadow of your Cross.
Let me not run from the love which you offer,
But hold me safe from the forces of evil.
On each of my dyings shed your light and your love.
Keep calling to me until the day comes when, with your saints, I will praise you forever.

Like many contemporary, non-Catholic, non-Evangelical Christians, my friends were uncomfortable with the “passion and death” talk.

When I shared this line from Ignatius’s original–“O, good Jesus, hear me; Within your wounds, hide me,” they were even more put off. All agreed, however, that we loved the line, “On each of my dyings shed your light and your love.”

I surprised them by telling them I meditate regularly on the Wounds of Christ, visualizing them on my own body, and that I am able to shed light and love on others’ dyings precisely because I have made of point of facing my coming dissolution head-on. I meditate on the Wounds of Christ to prepare myself for suffering. As a retired hospice chaplain who still volunteers, I can’t wait until COVID conditions allow me to see patients again, because I know I now have more love and light than ever to shed upon their dyings.

Of course, I’m still going to keep one step ahead of the disease for as long as I can, shoring up the levee against the dark wave to the best of my ability.

But when the wave comes, the levee breaks, and my disease overwhelms my defenses, I hope I am ready to let go gracefully all claims on life, and, recoiling from nothing, depart this world in a flood of love and light washing over the dyings of everyone around me.

An ordained Interfaith Minister, Scott Robinson taught music for ten years at Eastern University outside Philadelphia. Since leaving teaching, though his primary ministry has been hospice chaplaincy. He is active in the Third Order of St. Francis, a religious order in the Episcopal Church. His book The Dark Hills is available from Sacred Feet Publishing. Scott’s group Mandala performs his original interfaith kirtan, a type of audience-participatory call-response devotional music. He lives in Philadelphia. Learn more at opentothedivine.com.