When Thoughts are all you Have Left Jim Winterer '71 January 3, 2005 When Father Jan Michael Joncas received the University of St. Thomas Distinguished Educator Award five years ago, he surprised most everyone with a personal confession made toward the end of his acceptance speech.“I have always wanted to dance,” he told the audience. “But those who know me well know that this ungainly Polish body will never have the athletic grace of a Rudolf Nureyev or a Mikhail Baryshnikov; I always will be fated to flounder like Barney the Purple Dinosaur.”A few years later, the St. Thomas priest, theologian, author and composer wasn’t so worried about dancing. He would have welcomed the ability just to blink his eyes.During Holy Week of 2003, Joncas was struck with a severe case of Guillain-Barré syndrome. He was teaching that semester at the University of Notre Dame and noticed the first symptoms while celebrating Holy Thursday liturgy. At first it was unusual sweating and a strange feeling in his feet. Then he noticed he lacked the strength to lift the chalice as high as usual during Mass.Within a week, although his mind was sound and thinking was clear, he was trapped in a thoroughly paralyzed body. If not for a ventilator and other life-support gear, he would have died.No one knows why Guillain-Barré strikes some and not others, but Joncas was statistically the one person in every 100,000 to be knocked off his feet by its debilitating symptoms (another member of the St. Thomas community who suffered from the syndrome was the late Monsignor Terrence Murphy). In Guillain-Barré, the body’s immune system attacks the sheaths that surround peripheral nerves. Muscle weakness and tingling first appear in the hands and feet and progress upward toward the center of the body. During recovery the process is reversed.Joncas had all the classic symptoms. The night of Holy Thursday he kept waking up, and when he tried to walk, “the balls of my feet felt as though there was an inch or so of a Brillo pad between them and the floor.”He thought he just needed a good night’s sleep, but the next day he was still tired and, uncharacteristically, slept through Good Friday services.Because Guillain-Barré is a collection of symptoms, the syndrome is not always identified by doctors in its early stages. When Joncas went to an urgent care clinic for the first time Saturday morning, they told him he was suffering from “overwork and nerves.” Go home and get some rest, the doctor said.He returned to the clinic Easter morning where they told him he should get to a hospital. “I drove there and was admitted,” he recalled in an account written later for the Catholic Spirit newspaper. “I truly believe that God was watching over me throughout this period of worsening symptoms since two hours after I drove myself to the hospital, I could no longer walk on my own.”Friends had him airlifted to the Mayo Clinic in Rochester on Wednesday where doctors quickly diagnosed Guillain-Barré. The next day, a week after he first felt like he was walking on Brillo pads, his nerve damage was so extensive that the only way he could gaze at something different was if someone turned his head in another direction.It was a long way to fall, especially for a guy like Joncas who never met a moment he couldn’t put to good use.A native of northeast Minneapolis, Joncas is the eldest of eight children and attended high school at the since-closed Nazareth Hall Preparatory Seminary. While he never learned to dance well, it was clear even in high school that his musical talents soared above those of his classmates.In an era when more students than not were struggling to learn chords on the guitar and sing in key, there were quite a few good musicians at the school, a handful of excellent ones, and then … light years beyond the others … there was this smiling, good-natured kid named Mike Joncas who could sing the socks off anyone.He began his undergraduate studies at St. Thomas in 1971, where he was an English major and member of the new St. John Vianney College Seminary. Counting his student years, Joncas has been part of the St. Thomas community for 33 of his 53 years.After earning a master’s in liturgical studies at Notre Dame, Joncas returned to the St. Paul Seminary and was ordained in 1980. He was a parish priest for several years, served several more as director of education at the Newman Community at the University of Minnesota, and studied in Rome for four years where he earned graduate degrees in his academic specialty: the history and analysis of Christian worship. Woven throughout his years of serious academic study, writing and teaching was his work as a composer.He joined the St. Thomas theology faculty in 1991 and most semesters offered to teach extra courses. Somehow, in addition to a heavy teaching load, Joncas found time to: teach graduate courses and present workshops throughout the world; write three books dealing with liturgy and publish dozens of scholarly articles; compose and in some cases record nearly 20 collections of liturgical music (easily the best-known is “On Eagles’ Wings”); and serve as a weekend assistant at parishes in the archdiocese.And in the course of a few days, for someone simultaneously leading three or four more normal lives, all that was gone. There were no more deadlines to meet, papers to grade or meetings to attend. He could think and feel happy or sad, but he couldn’t move, talk, eat, smile, laugh, cry or … when the symptoms were at rock bottom … move his eyes.Most patients with Guillain-Barré hit that bottom within two or three weeks after symptoms first appear. The good news is that most patients recover, although some symptoms can linger for years.Although he didn’t know it, for a little while Joncas’ doctors, friends and family weren’t sure he would recover. The first round of immunoglobulin therapy wasn’t working.“They didn’t tell me about it at the time,” Joncas recalled later, “but at one point the doctors told my friend that if I didn’t start getting better soon, I never would get better. They were getting ready to tell me I would be one of the patients who would not recover.”The doctors decided to try a second round of immunoglobulin therapy to see what might happen. Luckily, just when the outlook was most bleak, that second round gave Joncas’ immune system a swift kick right where it was needed, jump-starting the recovery in his nerves and muscles. “They told me it was nip and tuck,” he said.It’s not like he jumped out of bed, though. What took a week for Joncas’ immune system to undo would take him more than a year of painful work to rebuild.“I think it would have been terrifying to be totally unable to move for the rest of your life, but still have a perfectly functioning brain,” he said.He recalled that a great comfort, once he began to improve, was the ability to blink his eyes again. That also gave him the ability to communicate by spelling words based on the number and order of blinks.”It’s surprising how adept we got at it,” he recalled.So what do you do all day when all you can do is stare at the wall?Joncas said he can’t recall clearly what he was thinking about during the worst of it, because at the time of greatest danger he was sedated.“Surprisingly, the fear that I was going to die was neither my greatest nor even a persistent fear,” he wrote in his Catholic Spirit article. “I certainly didn’t want to die, but I was surprised to learn that I wasn’t particularly afraid of dying.”What he did experience was fear of pain, which he encountered occasionally during some of the earlier medical procedures and often during the months of physical therapy that came later. “When I first started to function on my own again, after they removed the breathing and feeding tubes, the pain was excruciating,” he recalled. “It would come in waves, and that, in particular, was when time seemed to stand still.”He also had a fear of the unknown. At first, he wondered if he would walk again, or even breathe on his own. As he began to recover, he wondered if he would be able to say Mass, sing or play the guitar or piano. And although he understood that Guillain-Barré does not usually affect the brain, he feared losing his ability to teach, write or communicate with any sophistication and depth.Joncas said that if he learned anything from the ordeal, it was learning to surrender. “I’ve always been this very independent, adult male who did things for himself. Suddenly I could do nothing, even those private kinds of things like shampooing or shaving or bathing. I was totally dependent on others for everything. I learned you just have to let go, to surrender, and I think that was one of the hardest things for me.“As a priest I was trained as a caregiver, and I intellectually understood the meaning and importance of helping others,” he said. “But when I was ill, it gave me a whole new sense of how even the most little, tiny things can give profound comfort to someone who is suffering.“A chaplain might stop by for a quick check and offer a brief prayer, or it might be a light touch on my hand by a friend or family member, or a nurse from another floor might poke her head in my room just too say hi. It was those little things that were so wonderful, so significant.”And then there was the music.“A hospital room filled with life-support equipment is kind of a noisy place with the machines making beeps and clangs,” Joncas recalled. “But on Sunday and Wednesday evenings a group of Mennonites would stop by my room and sing hymns. It was the kind of singing you might have heard in the movie, “O Brother, Where Art Thou,’ and especially that song, “Down to the River to Pray.’“It’s a very clean, strong and authentic sound and I would nearly begin to cry when they sang. It was very emotional and it reminded me how much I missed music. I responded just like that, and absolutely it helped to heal me. I can’t put it in scientific terms, but it was really healing.”Joncas said while no one ever would seek out an illness like Guillain-Barré, “I bless God for some of the things it taught me. Without it, I never would have received this visceral knowledge of how much my family and friends mean to me … how much they love me. We grew so close because of it.“And as a theologian, I had an academic understanding of the topic of hope in church teachings. But as a patient, I came to know hope as a gift from God, and a daily experience.“Hope didn’t necessarily mean that I was looking forward to being cured. Rather, it had more to do with acceptance, with consenting to living with the way I would end up. I think hope has something to do with being allowed to live humanly, when all sorts of things are conspiring against that.”Last fall Joncas spoke to a sold-out luncheon sponsored by St. Thomas’ Center for Senior Citizens’ Education. He had plenty of time, paralyzed in a hospital bed, to ponder his topic: “The Wellspring of Life: More on Hope in a Troubled World.”He began by observing that the reality of death, as a challenge to hope, becomes more clear in the last stages of life, or … as in his case … after a sustained traumatic event where death is a real possibility.“In death, all that we know will be stripped of us. There will be no thinking, no living. And if all that we have will cease to exist, what is there to hope for?” he asked. “What does it mean to peer into an abyss of meaninglessness?”The world’s great religions have grappled with those questions, Joncas explained. The Greco-Romans did it with their story of Pandora’s box, which contained both evil and healing hope; the Old Testament did it through the story of Job; and the New Testament addressed it in John’s account of Lazarus.What the New Testament teaches us, Joncas said, is about love. He quoted some familiar lines from John: “I am the resurrection and the life; whoever believes in me, though he should die, will come to life . …”In other words, Joncas continued, “Jesus was asking Martha if she believed in the love that we share. He was asking: “Can you believe that?’ and “Can that die?'”“That’s a breakthrough,” Joncas said. “What is deepest and truest about us survives death.”During the course of his illness, Joncas received thousands of get-well messages, including many via the CaringBridge Internet site. About half of the messages were from family and friends here and abroad, and about half came from strangers who wrote because they had been comforted by the priest’s music, especially “On Eagles’ Wings.”What also brought him comfort was prayer. He couldn’t say Mass or read from his breviary, but tried his best to recall familiar texts like the Lord’s Prayer. Some classical music would come to mind, and he was grateful to remember the lyrics, “beyond my wants, beyond my fears, from death unto life,” from “Shepherd Me, O God,” composed by his longtime friend and composer Marty Haugen.Trying to recall prayers, or trying to say the rosary, proved difficult when he was sedated or suffering. His prayers became more simple on one level, but deeper on another. He would simply thank God for making it through another day, and would pray for all those who were helping him.“Every day I’d also ask God, “What are you trying to teach me?'” he said. “But I never did have a blinding insight into that question.”While Guillain-Barré led to a change in Joncas’ prayer life, it also led to quite a change in his emotions. “That probably is the biggest change I went through. I used to be this stoic and independent guy,” he said with a broad smile and easy laugh that peppers his conversation. “Now I am much more easily touched. I tear up at even stupid commercials on television. Now I can read a poem and I’ll almost start crying.“My whole emotional range is wider, and I’m less judgmental. Things that I once thought were so terribly important just aren’t such a big deal now. Instead of getting angry, I find I often just start laughing.”This fall, Joncas is back teaching a full load but for now has cut back on outside speaking engagements and weekend parish work. He still suffers from fatigue, but he can manage it most of the time.While Joncas’ life has involved very public activities … performing, teaching and preaching … he says he’s always been an introvert.“If you looked at the results from one of those personality tests, my score would be way, way over on the introvert side. It means that I have to have some quiet time to recharge after performing or speaking. That takes a lot out of me.”He is writing and composing again. While he can now use a piano keyboard, he still can’t play the guitar because of the sharp pain it causes in his fingers. His once-clear voice has been left somewhat raspy from the breathing tube. And while you can’t notice it, he says he still walks somewhat awkwardly.So does he think he’ll ever get to learn to dance?“Oh, walking is just fine with me,” he laughed. “I don’t think I’ll ever win a dance contest. To tell you the truth, I think that’s part of the surrender I was talking about.“I am so happy and amazed and grateful to be alive, all that other stuff just seems like gravy. So maybe I can’t play the guitar, and I can’t sing as well, and I won’t be able to dance. But I’m still alive.”And still smiling.Jim Winterer ’71, the News Service director at St. Thomas since 1980, was a classmate of Mike Joncas at Nazareth Hall Seminary in the 1960s.