By Tom Holmes
"This is a hard letter to write, and it will be hard for many of you to read," Rev. Julie Harley posted, Dec. 5, on the First United Church in Oak Park website. "On Nov. 19, I learned that I have amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease.
"It is a neuromuscular disease of unknown origin, and it has no cure," wrote First United's lead pastor. "ALS has caused nerve damage in my arms, legs and tongue, leading to progressive muscle weakness. 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."
"I've always had excellent health," Harley said while trying to explain what a shock the rapid onset of the neurological disorder has been. "I was a jogger, bicyclist, swimmer, Pilates, everything." She competed in a triathlon and four years ago did a 10-day wilderness canoe trip on the border between Minnesota and Ontario. She thought of herself as fit and healthy.
She also pictured herself as competent, strong and independent. She earned a Doctor of Ministry degree, published two books, cared for other people while serving as a pastor for 25 years and raised two daughters, Emma, now 19, and Rachel who is 21.
When she first experienced symptoms like poor balance and muscle weakness back in May, Harley, 52, hoped that whatever was causing her symptoms was curable or at least treatable. During the diagnostic process, she had to endure three MRIs, a CT Scan, a spinal tap, numerous blood tests and two 10-day hospitalizations.
All the while, she maintained the hope that whatever was wrong with her could be fixed — until an EMG test detected the signature facsiculations, or muscle twitches, that confirmed she had ALS.
Along with the decline of her physical health, what was equally devastating for Harley was feeling at times like she had lost her identity and her future.
"Emotionally, it's been very, very difficult," she acknowledged. "When I first had to start using a cane in July, it was really hard for me to do. I just didn't see myself as somebody who would need one. I had to graduate to the walker in September, and I just got this power wheelchair (Dec. 26).
"When they first told me I would need a wheelchair, I just cried. At several stages along the way, I felt sad or depressed or angry."
So how does a person who has pictured herself as healthy, strong, competent and independent respond to the reality of rapidly becoming dependent on other people for almost everything she needs?
For one thing, Harley has not wasted a lot of time and energy on denial. Her ability to look reality straight in the eyes she learned partly from her parents.
"When my father was dying of prostate cancer," she recalled, "he talked to me very openly about his death. He always looked for what was positive about his situation. He said, 'I've had a great life, and I can't wait to see what heaven is like.'"
Harley got more experience dealing with death during an 11-year stretch of her ministry working in health care. Based on that experience, she wrote a booklet titled, "Making End-of-Life Decisions" in which she encouraged people to make or update their health care and property power of attorney documents and their wills.
"So when I was put in the same situation," she said, "I knew I had to do the same thing. Regarding my future, I know it is short. I'll probably have to go to assisted living, and I'll have to contemplate whether I'll want to get ventilated eventually.
"You have to face the facts," she said.
Facing facts, however, isn't easy. Ernest Becker won a Pulitzer Prize 38 years ago for his book The Denial of Death. In it he wrote, "The main thesis of this book is that … the idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity — activity designed largely to avoid the fatality of death, to overcome it by denying in some way what is the final destiny of man."
Harley said two things have helped her not only "face the facts" but experience her situation as an opportunity to feel blessed. One of those blessings is the practice of classic spiritual disciplines.
"I've had a strong spiritual life for about the last 15 years," she said. "I've been very intentional about practicing spiritual disciplines like prayer, retreats and reading. They've really come to my rescue."
Harley has high praise for the Shalem Institute in Washington D.C. Her involvement in that organization's Contemplative Clergy Program helped her find a deeper spirituality. Her motivation wasn't to prepare for dying, but that is what happened.
"One of my friends said it's kind of like I've been in training for a long time and now the race is on," she recalled, "but I've been in training so I'm able to cope with it.
"I am not afraid of dying," she added in a quiet voice. "I truly am not. I've worked on it for years."
The second thing that has helped her cope with rapidly declining health is her church community. When First United's deacons became aware of her situation, they formed a group they call Team Julie, which now has 100 team members. "It's great," said Harley. "We have a website called Lotsa Helping Hands on which there is a calendar where I post my daily needs like 'would you bring me lunch on Wednesday or do my grocery shopping on Thursday or take me to the doctor on Friday or take me to get a manicure?'
"I've gotten so many meals," she noted with emotion in her voice. "It's been wonderful."
Harley's Christmas Eve meditation was an opportunity for her to integrate her biblical faith with her "emotional roller-coaster" experience.
"What are we to make of this God," she told her congregants, "who comes to us, swaddled and helpless, lying in a manger? Isn't this the last place we would expect to find God? I've thought about God in a new way during the last several weeks since I learned I have ALS, or Lou Gehrig's disease. My body is rapidly regressing and I am beginning to take on the characteristics of a small child.
"Why does God choose vulnerability rather than strength? Why does God choose dependence rather than autonomy? Why does God choose to come as a child who cannot walk or talk? I have come to the conclusion that the Word becomes flesh even in a body like mine, which is so weak it must be rolled to this church in a wheelchair.
"I thought I was glorifying God when I was at the height of my physical powers — competing in a triathlon or hiking up a mountain. But perhaps the message of Christmas is that God is glorified just as fully when I allow others to take care of me."
A few days after delivering that sermon, Harley said, "This condition has affected my relationship with God in that I'm more trusting because I realize how vulnerable I am. So I started praying to trust God to provide whatever I needed, and that prayer has really been answered — like every single day."
She also remarked that, perhaps counter-intuitively, some First United members have told her that her ministry is even more effective now because of the way she has been responding to her situation.
"When Julie was diagnosed with ALS we were shocked, saddened, left questioning, 'Why this gifted, dedicated, loving person?'" said longtime First United members Gy and Sylvia Menninga. "Julie always walks the walk when she talks the talk. She is accepting of all and, as parents of a gay son, we especially appreciate her support for the LGBT community.
"She continues to be a great role model for us at First United in the way she mourns her loss, in how she commends herself and all of us to God's care, in her often-expressed gratitude for our various attempts to help her, in the practical ways she handles her situation and in her ultimate acceptance and trust. We are learning anew that we are to live life to the fullest, as God is with us in joys and trials."
Another member of the congregation Joanne Despotes observed, "Seeing the ruthless progression of Julie's illness and disability has been almost unbelievable. Each week seemed to bring more evidence of disease progression, and we all had to constantly adjust our expectations. As a nurse I have seen other people with severe illness and disability, but it always hits home so much more when the person is close to you. Each week seemed to bring more evidence of disease progression, and we had to constantly adjust our expectations. Julie is a wonderful preacher and even this is being taken away as she loses breath support and control over the muscles in her tongue.
"We are grieving and will miss her as our lead pastor. But we have also been blessed. She has ministered to us throughout this experience. She has told us what was going on with her as she became aware. She has asked for our help so that we don't feel useless and powerless, and she has shown us how community support and communal prayer bring us closer to each other and to God."
Rev. Dr. Julie Harley retired as the lead pastor of First United Church on Dec. 31.
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