micki portrait  Newspaper Article

  [I've pasted the text from the article below because the Gainesville Sun archives are under construction.]

Saturday, July 17, 1999

Sharing the SCARE:
Gainesville minister's inoperable tumor makes her life her sermon, the Internet her pulpit

Sun staff writer

The same rule applies now as it did more than 20 years ago -- "share the scare, hear the fear."

It was the approach Micki Esselstyn and her husband, Erik, worked out back in the mid-1970s when Erik was fighting cancer.
[Photo of Micki and Erik]

Like most couples, Micki and Erik Esselstyn have had to triumph over life's ups and down. Now the ordained minister is dealing with a rapidly growing brain tumor that has failed to respond to radiation. But they have not locked out the outside world to deal with the fears and frustrations in private. They are sharing the scare and hearing the fear. JON M. FLETCHER/The Gainesville Sun

In the early part of that battle, they'd grown distant. They'd walked on eggshells trying not to talk about what was most obviously on their minds -- the fear of disease, the fear of death, the frustrations of seeing a spouse wither while still trying to work and care for children.

Getting those feelings out in the open -- sharing the scare -- while their partner would listen -- hearing the fear -- was an important step to recovery. That little slogan helped them get through that trauma, and they later went on to share that news with other couples facing similar circumstances.

Turn the clock ahead two decades. Erik, now 62 and well, is president of a non-profit environmental group, Cross Creek Initiative, based in Gainesville.

Micki is officially June Mitchell Bingham Esselstyn. But her mother was also June, and an older sister fractured her attempt at pronouncing Mitchell into Micki, and the name stuck. She's now 56 and is an ordained minister in the United Church of Christ. The couple have two grown children, Jody, 28, and Blake, 26.

In January Micki found out she had a large tumor growing in the lower right portion of the center of her brain. The location made surgery impossible, and extensive radiation treatments haven't stemmed its rapid growth.

"Twenty-three years ago Micki was on the other side of the bed," is how Erik phrases it.

From the hospital bed that now sits in the bedroom of their northwest Gainesville home, Micki can look out and see the bright greens summer has brought to the forest that grows outside her window. She now sleeps for long periods, and medication helps her manage the pain. The tumor's growth makes her struggle to put thoughts into words.

It's the kind of situation where many families would choose to close their doors, lock out the outside world and deal with the fears and frustrations in private. But the Esselstyns know that "share the scare, hear the fear" not only helped them more than 20 years ago, it has helped countless others they've touched. So the preacher is practicing what she's preached.

Back then they were living in North Carolina and did their sharing in a series of stories they wrote for The Charlotte Observer newspaper. Today, with the computer assistance from their son, Blake, who moved back home in January, they've shared it with friends and the world via the Internet.

At www.esselstyn.com, those who click in can follow the battle from the initial diagnosis to the latest update. They will also see no matter what the outcome, Micki Esselstyn has packed as much living as possible into the past six months.

"Trying to maintain my balance between the belief that I can get well and the medical/Hospice expectation that I may be dead in six months is like riding two separate logs down a rapidly flowing river," she wrote in one update. "Knowing that you are joining me in this tricky balancing act is comforting for me now and reassuring for my family in the future."

For now, Micki's life is her sermon and the Internet her pulpit. It's a "wilderness" that few in the clergy care to share, and that, she says, is part of the value.

"I thought for me as a minister I needed to show confidence," she said. "The first week with my adversity, I'd lost the confidence."

But she learned that loss wasn't a defeat.

"People have found that tremendously moving," she said.

At the time she was diagnosed she was serving as the interim pastor of St. Andrew's Presbyterian Church in Jacksonville. It was a challenging congregation that was proud of its reputation as being "the frozen chosen," and is now equally as proud of its conversion to a "hugging church."

"I think one of the major lessons they learned is that no Christians can be the frozen chosen, no Christians can expect their lives to be unfeeling, uncaring," she said.

The Rev. Classy Preston, pastor of Pleasant Grove United Church of Christ in Morrisville, N.C., has been Micki's friend since they first met at New York Theological Seminary in 1992. Preston said "we as pastors preach the gospel of good news that's easier to preach than it is to live."

"As pastors we lead others from the wilderness, but when we find ourselves in the wilderness it's a struggle to apply the same faith walk to ourselves," she said.

Being open about that struggle, Preston said, is typical of her friend.

"Even in her own wilderness she's ministering to others, " Preston said. "And she's living out her calling."

In the article she wrote in 1977, Micki pulled no punches in sharing her feelings and struggles.

While Erik was home and so miserable my feelings of helplessness and aloneness had taken their toll. A part of me -- as I could only admit a year later -- had wished Erik would die, would end his own suffering as well as my misery of impotently watching him suffer and pull away from me...

As I write these words I feel pangs of guilt and remorse, but I also know such wishes are natural. I wanted my husband, not a blob curled up in a bed who could only occasionally shuffle around with barely enough energy for his own basic needs.

They were words that seemed harsh, but that garnered letters from dozens of people who said they too felt that way, but had been afraid to say it. They'd found comfort in her sharing.

Erik says he hasn't yet wished Micki would die, to which she quips, "That's because I don't look as bad as you did," offering up evidence her sense of humor is still functional.

But neither has it been a time without trials.

"I get so frustrated at her dependence -- it seems so selfish -- and at times I'm just overwhelmed," he said. "There are people who have done it for years; I've only done it for a couple of months."

But he hasn't been alone, and to that he's thankful.

"We are blessed with a circle of really caring friends," he said.

Diagnosis and prognosis are the obvious trauma points, but there have been others. Beginning to deal with Hospice, when years before Micki trained Hospice workers, was especially emotional. The switch to a hospital bed was a step much larger than simply getting a different place to sleep. But they continue as a team. Sometimes, even unexpectedly, they find their story has helped someone.

Recently Erik was on the phone with an airline ticket agent. He explained that his wife was under Hospice care and was now too ill to make a scheduled trip. The agent mentioned that her father had recently begun receiving Hospice care. As their conversation wound down, Erik got back to the business of canceling the tickets. When he gave his last name, there was a momentary silence on the phone.

"Oh my gosh, I was on your website last night," the ticket agent confided.

"It made us thrilled it was helping others," he said.

Years ago, Micki said, "We have cancer to thank for a lot. It made us appreciate health and food."

Today, "thank" might not be her choice of words, but the disease is teaching her new lessons.

"I feel as if the message has been very clear to let go of being in control,'' she said. "I'm letting go of fear."

She's also seeing a difference between cellular and "soul-ular" healing. She recalled how she'd once heard it explained. "You can be healed, but that doesn't mean the disease is cured or that the person is going to live."

And as the story continues, she'll continue to share the scares, along with the frustrations, the joys and successes, knowing there are many out there to hear and who care.

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