Shawn Vestal: Awaiting a very important call, Bishop with lung disease embraces the spiritual meaning in her diagnosis

Gretchen Rehberg, the bishop of the Episcopalian Diocese of Spokane, has had a constant companion in recent months: a small black backpack with an oxygen unit.

She doesn’t always use it, but it’s always nearby.

“The doctor has said I should get over my pride and wear oxygen more often,” Rehberg said.

She’s also never without her phone – not at night, not even during church.

She’s waiting on a very important call.

The 58-year-old bishop, a native of Pullman in her seventh year leading the diocese, is on the wait list for a double-lung transplant at the University of Washington Medical Center.

She has had pulmonary fibrosis for many years, a likely consequence of the days she spent helping treat survivors near ground zero following the 9/11 attacks. She’s still at work, but for someone who loves to hike and run, the condition has slowed her down. Her lung capacity has diminished to the point that climbing a flight of stairs is a challenging proposition.

“I say to folks, ‘I’m not that sick, I just don’t breathe very well,’ ” Rehberg said last week in an interview in her South Hill office. “I know there are people who are sicker than I am.”

Rehberg has had problems breathing since 2002 and was diagnosed with pulmonary fibrosis – a scarring of the lungs – in 2012. Her doctors recommended in November that she go on the transplant waiting list, and she was officially put on the list in January.

That happened while she was on sabbatical from the dioceses following a flare-up of the disease; her symptoms had been relatively stable before taking a turn for the worse, with her lung capacity dropping from about 50% to 40%, she said.

She’s communicated with people in her diocese about her health, and draws comfort from knowing she is in the prayers of many throughout the region.

She doesn’t relish the thought of the transplant itself – “I see pictures and I think, ‘Oh goodness’ ” – but would love to be able to breathe more freely again, of course.”

The average wait for a transplant is six months. In the meantime, she sees her situation as a chance to engage with others about the nature of God in a world where there is sin and suffering.

“I firmly believe that God walks with us in that suffering,” Rehberg said.

She experiences that connection in a specific way now, recognizing that Christ suffered on the cross from the pain of not being able to breathe.

“I find that very powerful,” she said.

At ground zero

On the morning of Sept. 11, 2001, Rehberg was in her dormitory room between classes at the General Theological Seminary in New York City, reading a Tom Clancy novel, “Debt of Honor.”

“I had just finished the part where a plane flies into the Capitol,” she said.

Rehberg had earned a doctorate in chemistry and worked for eight years at Bucknell University as a professor before entering the seminary. She was in her third and final year of the program to become an Episcopalian priest. The seminary is in the Chelsea neighborhood of New York City, about 3 miles from the World Trade Center.

Word came that morning that a plane had crashed into one of the center’s twin towers. At first, Rehberg assumed it was a small plane that had somehow gone off track.

Then came news of the second plane.

“We realized something more serious was happening,” she said.

She and some fellow students climbed to the top of the chapel tower, where they watched the first tower fall. They decided they would go give blood to help, and went to St. Vincent’s hospital in Greenwich Village – the closest hospital to the twin towers.

Many others had had a similar thought.

“They were lining people up by blood type and the lines were blocks long,” she said.

So Rehberg went into the hospital to offer her services. As a firefighter and EMT trained in dealing with hazardous materials, she was quickly put in charge of running a decontamination station, right outside the ER. She expected to be overrun with patients, but had only a few.

There just were not many survivors.

She remembers asking a fire officer, “Do you know where your crew is? He said, ‘The entire crew is dead.’ ”

‘Committed to peace’

After that first day, Rehberg worked at ground zero for a couple of days, and then sporadically at St. Paul’s Chapel after that. Though she had firsthand experience with tragedy and suffering from working as a firefighter, the aftermath of the terrorist attacks was something entirely different.

“I’d never seen anything like it,” she said. “I didn’t talk about it for years and I certainly didn’t talk about it with people who had not been there.”

It also focused her thinking about the violence and warfare around the world, and the nature of human beings and God.

One of the central challenges of faith is to reconcile belief in God with the existence of tragedy and suffering.

Rehberg said addressing that question is important to forming a true understanding about God. She does not believe – nor does Episcopalian theology hold – that God causes, prevents or controls everything that happens. She does not believe, to cite the commonplace phrase, that everything happens for a reason.

“It’s not God’s will that people flew planes into the World Trade Center,” she said.

Human beings sin and cause suffering – suffering that God experienced as Christ on earth, she said, so he is with people in a real way when they suffer. And the teachings of Jesus show people the path toward a better world, one where peace, justice, love and care for the sick and poor are at the center of our communities.

“In a world of violence and suffering, Jesus said you can live a life of love – you can actually live a life of love,” she said. “We can all live differently and make a difference.”

The 9/11 attacks were an intensely moving experience for Rehberg – but she was also aware of how many people all over the world live with the suffering of violence in their lives all the time.

“There are places in the world where that is almost nothing,” she said. “It made me more and more committed to the work of peace, the work of reconciliation.”

‘Getting worse and worse’

Rehberg was ordained and became a priest at a church in York, Pennsylvania. About a year after 9/11, she was out on a run when, “All of a sudden it felt difficult to breathe.”

She went to a doctor, who told her she likely had asthma resulting from her “brief but intense” exposure to toxins near the World Trade Center. She began taking asthma medications.

In 2006, she moved to Lewiston to become the rector of the Episcopal Church of the Nativity there. She would take daily hikes in the area at the time, but she found that her difficulty breathing continued. She would avoid hills, or take shorter hikes.

“Things just kept getting worse and worse,” she said.

In 2012, she saw a new doctor in Lewiston, who took a chest X-ray that led him to a different conclusion.

“He said, ‘Oh, you do not have asthma,’ ” she said. “The reason the asthma meds didn’t work was that I didn’t have asthma.”

Rehberg wound up spending a week at National Jewish Health hospital in Denver, where she went through a week of tests that confirmed a diagnosis of pulmonary fibrosis, a scarring of the lung tissue that restricts the ability to take in air and limits the transmission of oxygen into the bloodstream.

Since then, she’s been under the care of doctors at UW.

Until late last year, her problems were getting worse, but slowly. Then she had a flare-up, and that was when she went onto the transplant list.

‘No good answer’

Her doctors believe her exposure on 9/11 was likely the reason – or one of the reasons – for her lung disease, but it’s not possible to say so with certainty.

“I’m fine with that,” she said. “I’m less concerned with knowing the exact cause … Everyone wants to know, Why? For me, it’s more about how you respond.

“ ‘Why?’ is the question every pastor’s been asked. You go to someone’s death bed. You go to someone who’s suffering and the question is always, ‘Why?’ The challenge is, there’s often no good answer.”

She wants to use the experience as a chance to explore the nature of God and share that with the people she serves; to feel the love of God as he’s with her in her suffering; to encourage people to follow his precepts.

The average wait time for someone on the transplant list is six months, but the reality is that it could come at any moment. When it does – when the right donor dies – she will have to be ready to go immediately.

Though they come with risks, lung transplants have a strong record of lengthening the lives of lung-disease patients. The median survival rate for lung-transplant patients is 5½ years, according to the UW program, and most patients report that their lives get a lot better after the surgery.

After the surgery, there is a recovery period of around four months, during which she will need to live in Seattle for frequent check-ups.

In the meantime, she continues doing her job. Her backpack is always at the ready, and her phone nearby.

She has to stay close to home, and has had to call off travel commitments related to the job – a consequence that she doesn’t mind all that much.

“Oh, shucks,” was her joking reaction to having to miss some of that travel.

Some people have suggested to her that she could qualify for disability benefits and step away from work, but she’s not interested.

“I love what I do,” she said. “I’m capable at what I do. Why would I not do it?”