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The Rev. Julie Harley, 52, (right) recently stepped down as pastor of an Illinois church because of ALS.
Chuck Berman/Chicago Tribune
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Date published: 2/2/2013
CHICAGO TRIBUNE (MCT)
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, learned toward the end of November that she has amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. She had been serving as lead pastor of First United Church of Oak Park, Ill.
The illness has progressed with fearsome speed. Harley 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 used to, and 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, several 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.