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.
Harley 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.”
Harley doesn’t fear death.
“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.”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.”