Evangelizing through the Catholic Arts

Joy and Suffering – Living with ALS

SJC-SealHere’s another excellent blog post from Saint Joseph’s College of Maine’s Theology Blog.

by Saint Joseph’s College Online Theology FacultyGrattan Brown

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 a 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.

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 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.

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