Joy and Suffering: Living with ALS

Worth Revisiting Wednesday! This post originally appeared on July 27, 2014.

In January 2011 I was giving a presentation on bioethics at my parish, and just after the presentation started a man hobbled in on a cane. A few months later I was giving another presentation on the same topic, and a man entered the room in a motorized wheelchair. I puzzled for a few moments because it looked like the same man. As I continued with the presentation I realized that it was indeed the same man. It was rather unnerving to be able-bodied, in good health, and speaking about ethical issues so closely related to the suffering of the sick, while this man, who was clearly suffering from a debilitating disease, was there listening intensely. I couldn’t help wondering what it was like to be grappling with these issues “from the inside”—so to speak.

Marty and I met soon afterwards. We discussed our common interests and goals: we were both striving to be good husbands and fathers. Marty recounted stories of work and play around the horse farm where he and his family live. He spoke about arranging horse jumps for his daughter Cecilia, clearing brush from the woods behind the house, laying up firewood for the winter, cleaning out the horses’ stalls, and myriad other chores. In our discussions about bioethics he drew upon his medical expertise, built up over eleven years as a successful, interventional radiologist.

Marty was also interested in my literary and theological background. He asked me to read the rudiments of his spiritual autobiography. I asked questions that prompted him to think more deeply about the meaning of the joys and sufferings he was experiencing. At times I felt as though I was giving him “work” to replace the professional life lost to ALS. And what a “worker” he has been! His spiritual autobiography, Joy and Suffering: My Life with ALS,was dictated through an iPhone into emails, initially, and then into a document that was edited by Christian Tappe of St. Benedict Press.

D'Amore

Photo of D’Amore Family at Lou Gehrig’s Disease – ALS website

In many ways, Marty is a typical American guy, but there is definitely something special about him. He is inspired by the meaningful lives other people lead, for example, by the doctors who first showed him the beauty of a medical career and motivated him to pursue it. He has been given given plenty of natural intelligence and talent, and as a young man he struggled to discover and develop himself. He worked hard at his profession, marveled at the good he could do with it, and reaped its rewards. He has been wildly successful—by American standards—in his profession, family, and lifestyle.

More importantly, Marty demonstrates a kind of spiritual excellence. Not the spiritual excellence of the great ascetics of history, who master temptation with an iron will honed through self-denial. Rather the spiritual excellence of one who has prayed with a child’s trust for a good life, lost himself in the confusion of growing up, found the way his talents could lead to success, and finally, as he achieved success, recognized something missing even before detecting the first symptoms of ALS. ALS focused his heart and mind on another kind of success: developing spiritual maturity. By slowly eliminating his physical mobility, ALS forced Marty to find new ways to love his wife, children, and friends. His book offers Marty’s explanation of what he has learned in the hope that his family can discover, with him, some joy within the tragedy that has befallen them all.

Spiritual conversion is the stuff of great literature and epic poetry, but we are not usually given the privilege of a guided tour of this process unfolding in the lives of our neighbors and friends. We all change profoundly as we move through life, and know that our neighbors change in similar ways, but rarely do we get the opportunity to understand that change from the inside. In Joy and Suffering: My Life With ALS, Marty describes the experience of suffering with ALS, depicting not only the intricacies of the disease but also the hard-won meaning of the suffering it has brought him and his family.

This blog post was adapted from the Foreword to the book Joy and Suffering: My Life with ALS by Martin J. D’Amore.

Grattan Brown teaches Ministry with the Aging, Sick, and Dying for Saint Joseph’s College Online.

Update: Marty D’Amore died on January 28, 2015 surrounded by friends and family.  He was laid to rest in Belmont Abbey monastery cemetery, a few 100 yards from the chapel where he often prayed.

 

“A Still More Excellent Way”

Today’s epistle reading features I Corinthians 13:1-13.  Here St. Paul achieves a sublimity and spiritual illumination so excellent that still encourages and enlivens.  This passage surely appears in some odd settings: I’ve heard it read atop Maine’s Mount Agamenticus at a wedding that featured canine wedding attendants, and at Fulton, Missouri’s “Westminster Chapel” (where Winston Churchill coined the phrase “Iron Curtain” in 1946) at a Star Wars-themed wedding.  I Corinthians 13 makes these crazy-train stops because St. Paul’s scriptural language on divine love has become the foundation for our secular, cultural language.  Theologians rightly decry inculturation run amok, wherein cultural values infiltrate and overwhelm the Gospel’s primacy.  The cultural popularity of one chapter—roughly two hundred fifty words translated into English—from St. Paul points to another problem:  the dilution of the Gospel beyond the point of recognition.

These problems stem in part from St. Paul’s own words.  This particular segment

Love is patient, love is kind.
It is not jealous, it is not pompous,
It is not inflated, it is not rude,
it does not seek its own interests,
it is not quick-tempered, it does not brood over injury,
it does not rejoice over wrongdoing
but rejoices with the truth.
It bears all things, believes all things,
hopes all things, endures all things.

Love never fails.

These are precisely the words that wedding plans—Christian and secular alike—adore.  What could be nicer?  For starters, it helps to remember that St. Paul describes here God’s love (with clear implications for understanding the Trinity) from which our loves—Screenshot 2016-01-31 07.02.27spiritual and physical—take their form and vibrancy.  Love without God is bound to fail; only with God’ love—which we experience as grace—do we hope and endure all things. Supporting, enlightening, and justifying this great spiritual reality that is divine love stands the eschaton.  There will come a day when we realize fully and completely the truths by which we live now only dimly and partially seen.

At present we see indistinctly, as in a mirror,
but then face to face.
At present I know partially;
then I shall know fully, as I am fully known.
So faith, hope, love remain, these three;
but the greatest of these is love.

Amen indeed—love is the greatest.  We will know this love fully some day, but meanwhile how do we live now?  The eschaton brings to fulfillment the kingdom of God which Christ proclaimed.  From last week’s Gospel (Luke 4), Jesus reads Isaiah’s proclamation of good tidings to captives, the poor, and the afflicted, then sits down announcing “Today this has been fulfilled in your hearing.”  In other words, like St. Paul writes to the Corinthians, the Kingdom already exists here on earth.

Constructing the path to this “already, but not yet fully” is St. Paul’s “still more excellent way.”  God’s love, which the Holy Spirit brings us, enlivens our lives and interactions with each other. Any kingdom, and certainly God’s kingdom, necessarily rests on communitarian foundations. So, the more excellent way—an ethic, and the eventual route to God’s Kingdom—necessarily go through and with the Church. In this we benefit from, as St. Paul said, “a great cloud of witnesses” (Hebrews 12:1).   Father Michael Sliney, LC, cultivates a burgeoning YouTube and Google+ parish, each post declaring “Thy Kingdom Come!”  Anthony Esolen has written recently a delightful book Reclaiming Catholic Social Teaching. Using an impressive grasp of Pope Leo XIII’s encyclicals, Esolen reasserts the Church’s social message for family, Church, and state.  The relationship with God bonds the individual to each of these communities in specific ways.  The key, of course, is to make sure one’s loves are ordered properly.  This happens only with God’s love. Finally, today is the feast day of St. John Bosco, who pursued the “still more excellent way” with working-class boys in mid-nineteenth century Turin, Italy. It was not easy work, but St. John persevered.  A dream at age nine had convinced him God had called him to the vocation.  In the dream John fought a gang of boys, but then a man intervened, calling John to become their leader.  When John protested, the man insisted humility and cheerfulness would win them over.  St. John’s dream, in other words, reaffirmed St. Paul’s “still more excellent way.”  The providential intersection of St. Paul’s epistle and the feast of Catholic youth ministry’s great patron should illuminate our own relationships with God and, through God, with others.

Jeffrey Marlett teaches theology for Saint Joseph’s College Online. He blogs at Spiritual Diabetes.