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Living creatively with diminishments: Lessons learned after a Parkinson’s diagnosis

“At every moment we see diminishments, both in us and around us … premature deaths, stupid accidents, weaknesses affecting the highest reaches of our being,” writes evolutionary scientist and Jesuit priest Teilhard de Chardin in “The Divine Milieu.”

When I write about diminishments, I use the term to include disabilities and beyond. When a child is born with autism or when a parent suffers traumatic brain injury, the disability of one person causes diminishment for entire family and community systems. Then Teilhard asks us the life-giving question: “How can these diminishments … become for us a [source of] good?”

The question speaks to me since I received a Parkinson’s diagnosis in 2014 on my return from a two-month mission with partners in Zimbabwe and South Africa. Crisis in health raises the same question you face with a crisis in relationship or vocation: How can you stay open to surprise and live with resilience?

I developed a list of seven responses to this question.

1. Explore the paradox of dying/rising as a paradigm for resilience.

Life is full of paradoxes in our experience and echoed in the Bible. In Jacob’s dream of a ladder, angels are ascending and descending — going up and down (Genesis 28:12). In the Gospel of John – an explicit reference to Jacob’s dream (1:51) – Jesus says: “You shall see heaven opened and the angels of God ascending and descending on the Son of Man,” referring to the dying rising Christ as Jacob’s ladder.

Paul seems to brag to Corinthian folks about his mystical experiences. “To keep me from being too elated, a thorn was given to me in the flesh … to torment me.” Was it a physical affliction or a human tormenter? Then Paul hears Christ say: “My grace is sufficient for you, for my power is made [complete] in weakness” (2 Corinthians 12:8-10). Paul concludes, “For whenever I am weak, then I am strong.”

What’s this crazy upside-down talk? The Bible seems far more “eastern” (pithy poetic nuggets) than “western” (rational logic). Jesus says, “The last will be first the first will be last.” The paradox of dying and rising offers a paradigm for creative resilience, like Jacob’s ladder with its upward and downward movements: an upward angel – get a new job; a downward angel – lose your job. When life upends you with a surprise catastrophe, ask: How can you find gifts in the gravity and the grace, in the downward and upward movements?

2. Practice resilience in little stuff to prepare for big diminishments.

Befriend failure and anxiety as birth pangs for creativity. Every failure is another notch on the ladder of learning, Thomas Edison would say. Ah, Jacob’s ladder! When leading retreats and I draw Jacob’s ladder with an upward arrow and a downward arrow, scientists would often comment: “It’s the double helix pattern in our DNA!” Why not? Dreams often validate inner archetypes, as mythologist Joseph Campbell shows in “The Power of Myth.”

Resilience also calls for one to adapt. Stephen Hawking was diagnosed with ALS in 1963 at age 21. Doctors gave him a life expectancy of two years. Yet Hawking lived a vital life until his death in 2018 at age 76. “Intelligence is the ability to adapt to change,” the movie “The Theory of Everything” quoted Hawking as saying. Right up to his death, Hawking used to say, “Life would be tragic if it weren’t funny.”

Funny? Yes! Since my Parkinson’s diagnosis in 2014, it has been nearly impossible for me to write or even use a keypad, so, I put my notes from lectures on my iPhone. When I use the dictation feature, my name Kent still comes out “Can’t.” It brings back a grating memory of my 5th grade teacher, who with her raspy voice would say: “Can’t you children be quiet!?” For a nanosecond, I’d think she was attacking me; “Can’t” sounds like “Kent.”

Recently I heard a snippet of an NPR report on stuttering. Instantly I thought: That’s what my feet do when they stick like magnets! I found an article called “Quick tips to stop stuttering” and adapted parallels to my “freezing gait,” a Parkinson’s phenomenon. For example: Focus on breathing; walk with rhythm (I use music); and use body gestures.

Here’s a silly example of practicing resilience. I often spill things — food, drinks, you name it. One morning while preparing an omelet, I spilled chopped peppers and onions on the floor. As I gathered them up, I thought, “I can practice compassion for myself, because I’ll surely be with folks today who need it and I’ll be ready!” I’m not always so quick to connect! In miniature it speaks truth: practicing with little irritations offers us clues for how to deal with bigger annoyances, which becomes a gift for community.

3. Combine physical and spiritual exercises — or reading.

Exercise is tonic for any diminishment. Neurologists have told me that physical therapy exercises for my back (after my surgery in 1974) may have prevented early onset Parkinson’s in my 30s or 40s! Three or four days a week, I pray the Lord’s Prayer (one phrase at a time) as I lift my right leg: “Our Father … in heaven …” then lift my left leg: “Give us this day our daily bread …” ending with “Yours is the kingdom … forever … Amen!” Then I pray “Day by Day” (a song from “Godspell”). Then the Serenity Prayer. Other days I read National Geographic while riding my stationary bike. Sometimes I practice Tai Chi gestures as I face Four Directions in Native American tradition. Have fun changing up your routines.

4. Take time for intentional prayer and contemplation and practice praying on the go.

Carve out time for intentional prayer and contemplation, but also practice on-the-go prayer. Pray with your body, with gestures, with Scripture (lectio divina) and with nature. Or try centering prayer: Begin by slowing down your breathing … notice … the chest rising … falling … in … out … upward … downward … expanding … emptying — like angels on Jacob’s ladder ascending … descending.

Let a centering word or phrase emerge – one that encapsulates your deepest longing – and then repeat it quietly for about 20 minutes (set a timer). During the day repeat the word while at a stoplight or during a board meeting.

5. Find a spiritual guide or group to reflect on life’s gifts and struggles to discern the Spirit’s invitation.

Find a trained spiritual director with whom to reflect and discern. Or find a group of spiritual companions. Check out Spiritual Directors International for geographical and religious preference: Visit sdiworld.org and click on “seek and find guide.”

6. Keep a journal to reflect on life experiences, dreams or mindful moments.

Keep a journal (paper or digital, not always daily) to express gratitude, to reflect on life experiences, dreams, daydreams, mindful moments and Scripture. After teaching writing to folks in prison, I’d say few experience more severe diminishment. Once a woman wrote a six-word short story: “My imprisoned soul has forgiven me.”

7. Befriend failure and angst as creative birth pangs. Adapt.

Befriend your weakness, failure and doubt. For 40 years I’ve regularly seen a therapist for my own bipolar mood swings. W.E.B. Du Bois, in his classic book “The Souls of Black Folk,” says: “Through all the Sorrow Songs there breathes a hope, a faith in the ultimate justice of things. The minor cadences of despair change often to triumph and calm confidence.” Trouble and sorrow are counterpointed with glory hallelujah! These rhythms speak to my bipolar soul, the highs and the lows:

Nobody knows the trouble I’ve seen, nobody knows my sorrow.
Nobody knows the trouble I’ve seen, Glory hallelujah!
Sometimes I’m up, sometimes I’m down, Oh yes Lord.
Sometimes I’m almost to the ground, Oh yes Lord.
Nobody knows the trouble I’ve seen, nobody knows but Jesus,
Glory hallelujah!

Driving back to Harrisburg, Pennsylvania, after having lunch with our associate pastor, I said, “I’m sorry, Art, I wasn’t a very good conversationalist today, one of my down times.” He turned and said, “I like you better this way!”

What a gift! In my down times, I can be a better listener, not so full of my own insights, more likely to ask questions, creating pauses, triggering other’s stories.

Harriet Tubman is often called “the black Moses” because of her clairvoyant deliverance of slaves via the underground railroad. In “Imagining a Life,” her biography of Tubman, Beverly Lowery tells how around 12 years of age, an angry white storekeeper threw a lead weight at a black man; it ricocheted onto little Harriet, leaving her delirious and unconscious for several days. When she recovered, Tubman possessed a prescient ability to “see” when it was safe for slaves to leave. The “downward” wound gave her the ability to send many people “upward” to the north! Her vocation arose out of her early trauma.

Ruth Panofsky Morgan Jones, a Penn State classmate, experienced severe hearing loss at preschool age. She married a Church of England priest, then founded “HearSay Charitable Trust” (with Queen Elizabeth’s endorsement) to counsel hearing-impaired persons and families — work that continues beyond her retirement!

Take a minute of silence. Then ask: What is some diminishment I’ve experienced? How have I discovered even some small gift in it? I invite you to find someone you can share this experience with in the next 24 hours.

Integration of these responses

Poetry can be a way to integrate the paradoxes of life: pain and gain, up times and down times. In a time of intense back pain (related to my earlier surgery), while teaching in Chautauqua, New York, I had to enlist a family member to carry my backpack to and from class. On Wednesday morning that week, I wrote my throbbing back pain into a poem, “Painting Pain,” as a tribute to artist Frida Kahlo, wife of artist Diego Rivera. In the movie “Frida,” you wince when, as a teenager, she’s pinned between two car bumpers. She lived with intense long-term physical pain as well as emotional and relational pain — yet she painted her pain into gorgeous art.

Painting Pain

Is there beneath
this pain some gain
that I might miss
if I complain?
Is there within
my complaint some
vibrant pigment
I can use to paint
suffering’s landscape,
to reinvent my pain
into a space for all
humanity to trace
an arc of beauty in
the dust and rain?

Kent Ira Groff is a retired pastor in Denver, who describes himself as “one beggar showing other beggars where to find bread.” Kent is author of eight books, including “Honest to God Prayer.” He serves as founding mentor of Oasis Ministries in Camp Hill, Pennsylvania.

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