Father Jim Lee faces his ALS diagnosis with prayer, support from friends, and hope in Jesus Christ
Father Jim Lee is having a hard time turning the key in his car’s ignition. Buttoning his shirts has become challenging, so he’s changed to Velcro fasteners. And while giving Communion at Mass, he often needs someone to hold the paten.
The muscle weakness is a symptom of ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. Father Jim — avid bicyclist, hiker and skier, and longtime pastor of St. Michael Parish in Olympia — was diagnosed with the neurodegenerative disease in November 2017.
He had been experiencing night cramps in his legs for over a year, and then muscle twitches and upper-body weakness. “I just kind of figured, ‘Well, I’m getting old,’” said Father Jim, who turned 70 on January 1.
“When I got the diagnosis, it was shocking. It really was,” he said.
Yes, there have been moments of grief over abilities that will be lost — Father Jim mused whether this year’s Easter Vigil was the last time he would be able to get into the font with those he is baptizing — and there’s uncertainty about the challenges to come. ALS is different for each person. The progression can be fast or slow; the average life expectancy is three to five years. ALS can rob a person of the ability to speak, move and, eventually, breathe.
But in the face of such a devastating diagnosis, Father Jim is also filled with faith, hope and a spirit for living.
“I am blessed,” he told parishioners at Masses on Epiphany weekend, when he made his diagnosis public. ALS may not seem like a blessing, he told them, “but yet I believe it will truly be so.”
“I trust in God’s love and in God’s plan for my life, and however God wants to use me in this.”
With no family living in the Northwest, Father Jim has gathered a core team of close friends to help him on the journey, to coordinate help from other parishioners, and to physically care for him when the time comes.
Father Jim Lee, left, and Father Gary Zender enjoy an October bicycle ride on the Chehalis Trail near Olympia. That day, Father Jim told his good friend that his doctor thought he might have ALS and needed more tests. Photo: Courtesy Father Gary Zender
“The way he’s going to die is not going to be pleasant at all,” said Lorri Targus, one of Father Jim’s team members from St. Michael’s. “He’s bound and determined to do it with grace and dignity and hopefully bring miracles from it to other people,” she said. “He’s always about everyone else, which makes him who he is and what he is.”
Prayer, said team member Brian Ziegler, is the root of Father Jim’s humility. “He doesn’t make a move without praying,” said Tom Targus, Lorri’s husband, who is also on the team.
Father Jim’s friends know that he is an achiever, so they are not surprised he is forging ahead in life.
He has a bicycling trip in Germany planned in August with his longtime friends Bishop Joseph Tyson of Yakima and Father Gary Zender, who is pastor of St. Louise Parish in Bellevue and the Archdiocese of Seattle’s vicar for clergy. A parish team has been formed for the July 28 ALS Association fundraising bicycle ride in Snohomish. Father Jim is overseeing major remodeling of the St. Michael Church sanctuary, and he’s going on this fall’s parish pilgrimage to the great cathedrals of France.
“His faith is profound, really a deep faith,” Father Zender said. “He really keeps the focus that this [journey] will give God glory and help other people.”
‘To die here among you’
The youngest of five children, Father Jim grew up on the South Side of Chicago. He was ordained a Maryknoll missionary in 1975 and served in Tanzania.
“He has a missionary spirit, and not just in proclaiming the Gospel,” Father Zender said, noting that while in Tanzania, Father Jim had to learn how to survive, fix things when they broke down and cook without electricity.
After coming to Seattle on sabbatical, Father Jim said, he “felt like God was saying, ‘I want you to be a missionary in a different way.’”
Starting in 1986, he served four years at St. Francis of Assisi Parish in Burien, then was pastor of Bellingham’s Church of the Assumption for seven years. He was officially incardinated into the Archdiocese of Seattle in September of 1995 by Archbishop Thomas Murphy and appointed as St. Michael’s pastor in 1997. In 2015, after serving 18 years, he felt the time was right to move to another parish. But there were no ordinations that year, and he said Archbishop J. Peter Sartain asked him to stay at St. Michael’s. After that, he felt a series of confirmations, “like, ‘Yeah, Jim, this is where you need to be.’”
During his January announcement, Father Jim told his parishioners that Archbishop Sartain has been “extremely supportive” of his requests to remain pastor as long as possible and live out his days at St. Michael’s, “to die here among you — whenever that might be.”
So within days of receiving his diagnosis, he began assembling a dozen or so core team members to assist him as the disease progresses. Their friendships with Father Jim have been cemented over the years by working in parish ministries and on fundraising campaigns, traveling or going on pilgrimage together, and just enjoying a lot of good times.
Nancy and Bill Buthorn have been friends with Father Jim so long that he has become part of their family. “I am so grateful for him in our life,” Nancy said. “He’s just so faithful and he’s a true inspiration.”
Father Jim talks with Dr. Michael Elliott, the leader of his ALS team, during a clinic visit at Swedish Medical Center in Seattle in April. Father Jim was accompanied by members of his support team, including Tom Targus, left, and Anita Goin, center. Photo: Janis Olson
Walking holy ground
One evening a month, Father Jim and his team gather for food and fellowship. “We kind of talk and share the journey … what people are thinking and feeling,” he said. “It’s been kind of wonderful, actually.”
It’s a privilege to be on Father Jim’s team, the members say, and they share stories of the spiritual and personal impacts their pastor and friend has had on their lives in his 20 years at St. Michael’s. Father Jim has prayed for them and helped them through tragedies, health issues and life crises.
“That’s one of the things I love about the priesthood,” he said. “I get to be with people at all different stages and moments of their lives. It’s such holy ground.”
Now his friends are walking that holy ground as they help him on his ALS journey.
“Our mission is to love him through it,” said Anita Goin, who is on the team along with her husband Gary, a doctor. “And then finding power … from the Holy Spirit to rise to whatever the occasions may be as his disease moves forward.”
“It’s going to be hard,” said Jill Murphy, a physical therapist who once worked with ALS patients. But “I think all of us have a strong enough faith to help us through it.” Murphy (whose husband Tom is also on the team) said her own faith is strengthened by Father Jim, who is “so obviously faith-filled, but he’s also human.”
“That humanism is something people can relate to,” she said. “Then he brings it back to Jesus, and Jesus on the cross … give it all to him and have faith, because that’s really, in the end, all we have to hold on to. It will get you through anything.”
Father Jim wants to live this journey with faith and joy, said team member Benedetta Reece, St. Michael’s steward for pastoral care and community outreach ministries. “But I think he also needs the strength to continue doing so. We need to pray for him and help him focus on life and make him smile.”
ALS is like a part-time job
In May, six months into his diagnosis, Father Jim’s ALS was progressing much slower than he expected. He said he is learning how to live with ALS — to be as productive as possible, understand and adapt to his physical limitations, and ask for help when needed.
“I pray about this every day: ‘Lord, use this as you want, however that’s gonna be,’” Father Jim said.
His own relatively minor limitations are put into perspective, he said, when he visits and thinks about Tim, a St. Michael’s parishioner who was diagnosed with ALS a month after Father Jim. For Tim, who is about 15 years younger than Father Jim, ALS is progressing much faster.
On Holy Thursday, Father Jim Lee washed the feet of Tim, a St. Michael’s parishioner who also has ALS. Photo: Horizon Photo
For Father Jim, there are appointments at the ALS clinic at Swedish Medical Center in Seattle, attended by some of his core team. The visits can last a few hours, not counting the long drive there and back. During an April appointment, Father Jim was seen by doctors and nurses; physical, occupational and speech therapists; a dietician; and social workers. The good news that day was “nothing’s changing fast,” said Dr. Michael Elliott, who leads the medical team.
To prepare for the possibility of bigger changes down the road, Father Jim has been “voice banking,” recording pages of phrases and some of his homilies so that if he loses his voice to ALS, a synthetic voice might sound more like him. He’s exploring eye control technologies and is participating in an ALS voice research program at Microsoft; researchers have discovered Father Jim has a unique vocal pattern that is helping take research further than before. He’s also joined an ALS support group.
It’s like having a part-time job on top of his regular duties as pastor of a parish with more than 2,300 families, Father Jim said. He is assisted by a parochial vicar, two deacons and a large staff. “St. Michael Parish is no small feat to kind of keep rolling,” Father Jim said. “Lots of stuff is always going on and my schedule is always full.”
These days, he often needs time to recharge, so he’s blocked out an hour each afternoon for rest. But sometimes the demands of parish life upend that plan.
“He gets so many requests. Think just about the emergency calls,” Reece said. “Our parish is huge,” Nancy Buthorn said. “It’s a lot of people and he wants to serve them all.”
Volunteering for a miracle
Two days before heading off to Italy on a parish pilgrimage last October, Father Jim saw a neurologist about his symptoms. ALS was one possible explanation, the doctor told him, “‘but we need to do some more testing, so don’t worry about that.’”
One stop on the pilgrimage was Padre Pio’s shrine in San Giovanni Rotondo. “He and I had a long conversation as we celebrated Mass at his altar, which was very powerful,” Father Jim said.
Two days after returning from Italy, the tests were done and the diagnosis was made. That evening, Father Jim went to visit a longtime parishioner who was dying. She responded to him with a smile “that was such a gift,” Father Jim said, becoming emotional. “And it’s like, OK, you can handle this.”
He went back to the rectory, changed out of his clerics, “and I said, ‘I need a beer.’” So he went to a pub owned by some parishioners, ordered his favorite burger and beer, then took out his smartphone, began researching ALS and found the Swedish clinic.
When Father Jim went to his first appointment at Swedish, he was accompanied by a dozen of his friends. Dr. Elliott wanted to know if he had any concerns. Well, yes — “‘I have no family and I’m afraid of being alone,’” Father Jim said, his eyes tearing up at the recollection. Dr. Elliott looked around the room and said, “‘You are so not alone.’”
Shortly after his diagnosis, Father Jim received the sacrament of the anointing of the sick from Bishop Tyson and Father Zender, and then a few days later from Archbishop Sartain. “It was just so wonderful, because I’m not usually on the receiving end of that,” he said.
He finds signs of God at work, from his meeting with the archbishop to being surrounded by good friends, caring parishioners and people he doesn’t even know praying for him. After his announcement in January, his parishioners showered him with an “overwhelming” number of hugs, cards and notes.
The video of his announcement shows him asking parishioners for daily prayers “for the intercession of St. John Paul II, who taught the world how to live and die well and with dignity.” And to Blessed Pier Giorgio Frassati, who needs a second miracle to become a saint — “and I’m volunteering,” Father Jim said with gusto, as the congregation laughed in response.
He concluded with a request for prayers “that I be able to offer whatever suffering this will entail for the salvation of souls and conversion of hearts to Jesus Christ, the true light of the world.”
Northwest Catholic - July/August 2018
Prayer for the courage to be great
Since being diagnosed with ALS, Father Jim Lee has said this prayer each morning:
Give me the courage to strive for the highest goals,
to flee every temptation to be mediocre.
Enable me to aspire to greatness, as Pier Giorgio did,
and to open my heart with joy to your call to holiness.
Free me from the fear of failure.
I want to be, Lord, firmly and forever united to you.
Grant me the graces I ask you through Pier Giorgio's intercession,
by the merits of Our Lord Jesus Christ. Amen.