[New post] Awaiting double lung transplant, Spokane bishop travels diocese, feels ‘called by God’ to ministry
David Paulsen posted: " [Episcopal News Service] Spokane Bishop Gretchen Rehberg has wrestled for years in a variety of contexts with a fundamental question of faith: Where is God in the midst of this? She sought an answer in September 2001, when she was among a group of " Episcopal News Service
The Rt. Rev. Gretchen Rehberg was consecrated as bishop of the Diocese of Spokane in March 2017. She continues to travel the diocese while waiting for a double lung transplant to alleviate pulmonary fibrosis. Photo: Richard Chan
[Episcopal News Service] Spokane Bishop Gretchen Rehberg has wrestled for years in a variety of contexts with a fundamental question of faith: Where is God in the midst of this?
She sought an answer in September 2001, when she was among a group of seminarians in New York who volunteered at and around Ground Zero in the days after the 9/11 terrorist attacks. It is a question she also asks herself now more than 20 years later, as she awaits a double lung transplant. Her pulmonary fibrosis, possibly a consequence of her time near Ground Zero, has made it increasingly difficult for her breathe as she travels her diocese in eastern Washington State and the Idaho panhandle.
Rehberg's prayers to God are not so much in expectation that he will physically heal her, though she is hopeful that the transplant will revive her health. In an hourlong phone interview with Episcopal News Service, she described God as more of a reassuring presence, because of the suffering Jesus shared with the rest of humanity.
"What most of us want is a God who takes away suffering, and that's not what we have," she said. Nor does she think the opposite, that God causes suffering, including her own. "I don't believe God is doing this to me, or anybody."
Instead, Jesus was born, lived, suffered and breathed his last breath, before rising again. For Rehberg, the crucifixion represents God's universal understanding. When she feels short of breath, "God knows what it means, what it means not to breathe."
Members of the Diocese of Spokane have known about Rehberg's lung condition from the start. Her diagnosis was included in the materials she submitted to be considered for bishop. She was elected in October 2016 and consecrated the following March.
Since then, her pulmonary fibrosis has slowly worsened, and a little over a year ago, she suffered a flare-up that sharply decreased her lung capacity. If lungs are like balloons, hers can't fully inflate because the tissue is scarred. Regular tests previously measured her lung capacity at 50%. After the flare-up, it dropped to 40% capacity.
Last November, her doctors suggested it was time to consider a lung transplant. Otherwise, "the lungs would just continue to fail," Rehberg said. While on a sabbatical, she spent much of her time praying over the decision. When she returned in January, she announced to her diocese that she was adding her name to a list of people seeking a transplant at the University of Washington Medical Center in Seattle.
"The biggest change is that I now have my phone on at all times," she said. That includes at night and during church visits, though she hands the phone to an assistant during worship services, so it won't be disruptive. She also has a packed bag in her car ready to go when she gets the call that a transplant is available.
Rehberg once enjoyed running and hiking but hasn't been capable of either for years. Higher elevations can complicate Rehberg's travel. Holy Trinity Episcopal Church, for example, is at about 3,400 feet in Grangeville, Idaho. Rehberg rescheduled her spring visit to the congregation to later this year, hoping that she will have received the transplant by then and will no longer need to use supplemental oxygen when meeting with parishioners.
While she waits, she resists any thought of easing her schedule because of her disability. "I absolutely love what I do. I can't imagine not doing it," she said. "I firmly believe I'm called by God to do this work."
Doctors disagree on the level of certainty with which Rehberg can trace her condition back to Sept. 11, 2001. What is certain is the timing: She first started suffering symptoms six months after the terrorist attacks.
On the day of the attacks, Rehberg was beginning her final year at General Theological Seminary in Manhattan's Chelsea neighborhood. She started attending in 1999 after a long and successful career in organic chemistry, including as a professor at Bucknell University in Lewisburg, Pennsylvania. She also had nearly 20 years of experience volunteering as an emergency medical technician, firefighter and hazmat officer.
That morning, after attending a chapel service and grabbing a coffee and a bagel, Rehberg was on a break from a church history class when she heard a plane had hit the World Trade Center. She and others on campus first assumed it was just a small plane, maybe an accident. When they heard a second plane had hit, "we realized something major was happening," she said.
Rehberg and several others went to the top of the chapel's tower at General Theological Seminary and could see the smoke coming from the World Trade Center. Then the first tower fell.
The group of seminarians rushed to the nearby St. Vincent's Hospital, thinking they should donate blood. Rehberg asked a nurse if the staff needed any help, explaining she had experience as a firefighter. The hospital dispatched her to the emergency room, to serve as a hazmat officer.
"At the time, it was very surreal. You're not thinking straight. You're not realizing what this is going to be," she said. "It was such a beautiful day, and then it wasn't."
She also teamed up with other clergy and seminarians at St. Paul's Chapel of Trinity Church Wall Street to provide pastoral care to the rescue crews and construction workers who responded to the destruction at Ground Zero. Over the next several months, as part of a pastoral care rotation, she volunteered a total of four or five days there. "Other people did way more than I did."
Rehberg was ordained a deacon in June 2002 and a priest in February 2003. By the time of her ordinations, she was feeling the effects of the pulmonary fibrosis. At first, doctors diagnosed it as asthma, but their anti-asthma prescriptions were no help.
Years later, while serving as rector at Church of the Nativity in Lewiston, Idaho, she realized her lung condition was getting even worse. "My dog and I, we'd walk six miles a day with hills," she said. "Then I started walking without the hills, then just four miles."
In 2012, her doctors sent her to a pulmonologist and then to National Jewish Health in Denver, Colorado, for a week of testing that resulted in the pulmonary fibrosis diagnosis. She now receives treatment every three months or so at the University of Washington Medical Center, a drive of more than five hours from her home in Spokane.
She no longer takes long walks and often requires supplemental oxygen. Going up stairs can be a challenge. "I can tell you exactly which churches you can't get into without going up stairs," she said. "You really open your eyes to access."
Health crisis an opportunity for personal growth
In the best-case scenario, Rehberg will receive a transplant in the next few months. Several more months of recovery will be followed by several years of deep breaths and an active lifestyle.
For now, she waits. Being on the lung transplant list isn't as simple as waiting her turn. The donor's blood type must match, and the lungs must be the right size for her body. The youngest recipients get a boost in their "allocation scores," sometimes putting them ahead of older patients, she explained. Her own age is 58.
She has her plan in place. When she gets the call, she will drive herself to her younger sister's house, about halfway between Spokane and Seattle. Then, her other sister will drive her the rest of the way to the University of Washington Medical Center.
The surgery will take an estimated 12 hours, and after two to three weeks of inpatient care, Rehberg will have to live near the hospital in Seattle for an additional three months to receive follow-up care. Her work as bishop will continue, by Zoom at first and eventually in person.
When asked what she might want to do with her new lungs, she seemed hesitant at first, then replied, "I want to start hiking again." She also would like to visit the diocese's retreat center, which sits on a hill over Spokane, about 400 feet higher in elevation than the diocesan offices.
The first successful lung transplant was performed in 1963. Since then, it has become a common procedure in the United States, which averages more than 2,500 transplants a year.
Rehberg will have to take medication for the rest of her life, to decrease the odds that her body rejects the new lungs. Transplant rejection and side effects from the medication are the main long-term risks for lung transplant patients. Nearly 90% of patients are still alive one year after a lung transplant. The current five-year survival rate is 60%.
"I hear that average, and that can be very scary," Rehberg said. "At the same time, the goal is to stay as healthy as possible in all other ways."
In the United States, "there's this myth where you can be completely in control of your fate," she said, "and that's simply not true." Some suffering is caused by humans abusing the freedom of choice given by God, she said, though other woes, such as environmental degradation and food insecurity often are rooted in societal or generational conditions that go beyond individual actions.
Whatever the causes of her own health crisis, Rehberg chooses to see it as an opportunity for personal growth. She came to realize she was not being truthful to herself – slow to admit she was sick and might need a transplant. "I hope it has made me aware of and compassionate to the challenges of others, and some of those challenges are even us as a church," she said.
Jesus, in John's Gospel, asks "Do you want to be made well?" Rehberg suggested that, to answer that question, Christians first must be honest about what afflicts them. In an era of denominational decline, The Episcopal Church would benefit from taking an honest look inward and accepting that change today requires Christians to rethink the role of the church, Rehberg said, and that isn't something to be feared.
"One of the realities of being a follower of Jesus," she said, "is we don't have to be afraid of change and death."
– David Paulsen is a senior reporter and editor for Episcopal News Service. He can be reached at dpaulsen@episcopalchurch.org.
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