CHICAGO — Early in her pastoral career, the Rev. Julie Harley encountered a woman with ALS, bent over in a wheelchair. It struck her as a particularly cruel illness — incurable, often hitting in the prime of life, immobilizing the body while leaving the mind intact.
It still strikes her that way, but now it’s her ordeal as well.
Harley, 52, until recently the lead pastor of First United Church of Oak Park, Ill., learned toward the end of November that she has amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
It has progressed with fearsome speed. She is using a motorized wheelchair, has around-the-clock caregivers and needs a breathing machine at night. Her speech is impaired, and she can barely hold a coffee cup.
The illness has robbed her of the ability to minister to church members in the way she had for the past four and a half years. She retired in December.
But ALS has not ended her ministry.
For church members, Harley’s illness is a tragedy but also a powerful lesson in facing adversity with faith, courage and even humor.
Though she has some difficulty speaking, she has no trouble thinking about matters of life, death and meaning. And the shortness of the time she has left has stripped many conversations with church members down to their essence.
To her joy, a number have told her how much she has meant to them.
“They speak to you very honestly and openly because they know there’s not much time left,” Harley said. “In a way, I’m listening to my own eulogy.”
At the same time, another ministry has blossomed: Church members are now ministering to her.
Some 125 former and current congregants have stepped forward to join Team Julie, a care effort organized by First United’s deacons.
Coordinating their efforts online, they are bringing Harley meals, staying with her for lunch or dinner, taking her to medical appointments and praying with her.
When Harley, a divorced mother of two daughters in college, could no longer navigate the steps to her second-floor condo, Team Julie found her an apartment in an elevator building across the street from First United, with a view of its meditation labyrinth. They furnished the apartment for her and moved her in.
Team members volunteer for tasks she posts online so quickly that “if you don’t sign up the same day that possibilities become available, you can find yourself shut out for a month or more,” church member Tom Wolford said.
For all the bedside visits she made over the years, the prayers she gave, the listening ear she offered, “We want to pay it back and pay it forward,” said church member Sandy Jefferson, recalling how Harley visited his dying partner every week.
“People came out of the woodwork,” said Harley’s daughter Rachel, 21, who thinks that without all the help, she would have had to take a leave from Elmhurst College.
In her last sermon, to a packed and sometimes weeping crowd in December, Harley quoted a friend, saying, “It is just so (expletive) unfair.”
She let the expletive fly.
“I’m so glad I finally got to say (expletive) in a sermon,” she told congregants. “You can’t fire me now!”
Harley had been fit and healthy, a vegetarian, cyclist, swimmer and runner who had completed a triathlon and a half-marathon. After serving at several churches and a social service agency in suburban Chicago, she was four years into her position at First United and felt she was in the prime of her pastoral life. Her daughters, Rachel and Emma, 19, were in college but not far away. Life was good.
Then last May, Harley began losing her balance when she ran. She couldn’t put her leg on the kitchen counter to stretch. She fell down in her bedroom.
By July, she was using a cane; by September, a walker.
She hid nothing from the congregation as she underwent a long battery of tests as doctors tried to determine what was wrong. She asked for prayers and help. Through Team Julie and the Lotsa Helping Hands website, which coordinates caregiver support, she got both.
On Nov. 19, she was diagnosed with ALS.
And she knew exactly what it meant.
“It’s pretty much the worst one you can get,” Harley said with difficulty while sitting in her wheelchair-accessible apartment.
“It’s a very cruel disease because you maintain your mind till the end of your life,” she said. “I know it’s going to be very brutal.”
Acquiescing to her daughters’ concerns, she retired.
“Mentally and spiritually, I’m still the same, but physically, I can barely answer the phone,” Harley said.
Her Dec. 6 open letter to her church community minced no words: “I will soon need a power wheelchair. It is likely that my breathing, speaking and eating will also be impaired. Most people with ALS die of respiratory failure within 3-5 years.”
“It all happened so fast,” church member Alison Valderrama said. “It just really shocked people.”
Church members struggled to make sense of it.
“You take this in a context of a religious institution, and it becomes more difficult to process in a way,” Kevin Crowell said. “Bad things aren’t supposed to happen to good people. And Julie is a very good person.”
Harley wrestles with it herself.
“I don’t think God sends tragedy to people. I feel that physical illness is just one of the facts of life. I’m not angry at God,” she said.
Still, “I would say I am mystified,” Harley said. “Here I am doing good work and living a good life and trying to do good. It’s hard to be cut off from that.”
The most painful part is thinking about her daughters.
“I think it’s really harder on them than on me,” she said. “I’m an adult. I can deal with my mortality. They’re the ones who are going to miss me.”
She doesn’t complain. She is grateful for the outpouring of help, the spiritual lesson of learning to accept help and the stream of visitors so constant that, she said with a grin, “every day is like an open house here.”
A few weeks ago, she went to Las Vegas with her older daughter. “We went to shows, we ate at great restaurants, we went shopping,” she said. “You only live once; might as well have fun.”
Harley doesn’t fear death.
“I have been with so many people who are dying and have conducted so many funerals that I’ve had a lot of time and opportunity to think about what my own death will be like,” she said. “If anybody has dealt with their mortality, I have.
“I do believe in life after death. I am not afraid.”
Church members have watched her response to her illness with awe.
“She has this really, really strong sense of faith,” Crowell said. “She’s not afraid. She’s sorry, she’s sad — she has two young daughters — but death itself holds no fear for her. That to me is amazing.”
“I heard her say she didn’t fear death, and it wasn’t just talk,” church member Bob Haisman said. “She’s locked in this life-and-death struggle, in front of all of us, so it’s very public, and she is exemplary. It’s one thing to talk about all this, but she was talking about it as she was doing it, as her body just gave way.”
“She’s faced this thing with just an incredible amount of grace and dignity,” church member Wolford said. “For her to have the joy of living that she does, given what’s happened to her physically — it’s extraordinary.”
Harley is under no illusions about what lies ahead. She wrote a booklet about end-of-life care decisions in 1994, and now has been updating those decisions for herself. She plans to have a do-not-resuscitate order and is wrestling with the grim question of whether she would want to be kept alive on a respirator if she loses the ability to breathe.
Probably not, she thinks.
Until then, she is taking her pleasures in life where she finds them, which she still does, and treasuring her friendships and serious conversations.
“It’s not like my ministry is over; it’s just taking a new form,” Harley said.
And after 27 years of ministering to others, “I’m getting it all back.”
©2013 Chicago Tribune
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