The Rev. John Schule’s Edgartown home is decked out for Christmas. Even though he’s nearly 86 and still waging a seven-year war with angioimmunoblastic T-cell lymphoma, a rare form of cancer, he managed to climb a ladder to decorate both indoors and outdoors. He’s been feeling good lately.
A beloved retired pastor with a 20-year tenure at the Federated Church, the Rev. Schule is no stranger to illness and despair.
“I’ve had people die in my arms, people with all kinds of ailments,” the Rev. Schule said last week, sitting in a comfortable chair next to the fireplace. “I think of my ignorance looking back; we think we know how someone is feeling, but there’s no way we can know.”
His own journey with cancer began seven years ago, at a time when he was a caregiver for his wife, Elyse, who has since moved to Windemere. At first the doctors thought he had contracted Lyme disease, the Rev. Schule said. After many tests and many days in the hospital, he was diagnosed with Stage 4 cancer.
“It’s a very rare form, and there’s no cure for it,” the Rev. Schule said.
For years, he tried all kinds of experimental treatments, spending long periods at the Dana-Farber Cancer Institute in Boston. The Rev. Schule’s Island physician for 42 years, Dr. Michael Jacobs, often made the trip to Boston with him. The past two years, the Rev. Schule said, were the most difficult and the most challenging of his life. The experimental medications often came with significant psychological side effects that made him feel like he was losing his mind, the Rev. Schule said. “My good friend Charlie Morano was there through all of that,” he said. “He was with me during the worst of it.”
Not long ago, he made up his mind to stop treatment altogether.
“No more infusions, no more drugs,” the Rev. Schule said. “I feel like I have my mind back, or what’s left of it.”
A sense of humor and the determination to find hope in the most unfavorable of circumstances are his trademarks.
“I remember lying in bed on the eighth floor of Brigham and Women’s Hospital, and one of my friends heard I was there and he came by to see me,” the Rev. Schule said. “He wanted to know how it felt to have cancer. I told him it’s an awesome experience; you probably won’t understand this, because I’ve accepted it with gratitude. It’s an opportunity to look at life another way.”
It’s been almost a year since the Rev. Schule began receiving care from Hospice of Martha’s Vineyard, an organization he helped found 35 years ago. His nurse, Lori Perry, comes once a week.
“She probably knows me better than anyone, she’s such a great listener,” he said.
Ms. Perry is also the clinical director for Hospice, and she explained that the Rev. Schule’s particular type of cancer leaves his immune system extremely compromised, and that has meant many trips to the hospital. Another characteristic of his illness is terrible itching, something that the Rev. Schule has learned to live with. Ms. Perry said she asked him how he manages to cope with it. “He said he’s grateful for it — it reminds him that he’s not in charge, and it lets him know he’s alive,” Ms. Perry said.
Along with Hospice care, the Rev. Schule receives physical therapy with Andrea Cranson, although he jokingly refers to her as a “physical terrorist” rather than a physical therapist, he said she’s one of the many people he’s depended upon. “I wouldn’t be alive if it wasn’t for her, for all of them,” he said.
The Rev. Schule says his life has been full, and that he has much to be grateful for, including his five children with Elyse. An accomplished painter, the Rev. Schule said that before he began ministerial studies, he planned to continue studying art.
“My art teacher had gotten me four full scholarships,” the Rev. Schule said. “That was probably my most important turning point. I was 18 years old, and I went to him one afternoon, and told him I appreciate everything you’ve done for me, but I feel called to be a pastor. He put his arms around me and said, ‘Listen to God, not Mr. Prevatella.’”
After serving as a minister for a total of 50 years, the Rev. Schule has developed many deep and lasting relationships, and he admits they have led to some amazing experiences.
When the Rev. Schule was about to retire, his congregation wondered where he’d live after he left the position. A parishioner came forward with enough money to purchase a home. He’s since built a couple of small buildings on the property that look like tiny cottages; he uses one as a place to read and write, and the other is handy for visiting grandchildren.
“I like to write in the morning,” the Rev. Schule said. “Thoughts come and go so quickly. “
With the help of another friend, he achieved a goal several years ago when he was gifted with the funds needed to build a small chapel on the property. The little gray shingled chapel with the burgundy doors has a small altar and a stained glass window. An evocative painting of Christ’s face at the Crucifixion hangs on the wall.
“That’s real blood there,” he said, pointing to the painting. Now faded to almost brown, the Rev. Schule’s blood is a visible part of the painting.
He said the “chapel in the meadow” will be moved to Featherstone Center for the Arts after New Year’s. The rest of the nine-acre property features well-worn paths, with quiet spots for sitting and reflection.
In 1983, the Rev. Schule took a three-month sabbatical with the Taize community in France, an international ecumenical monastic order founded by Brother Roger Schutz in 1940. It just so happened that Mother Teresa, a good friend of Brother Roger’s, was visiting Taize at the same time. The Rev. Schule said he was seated with the brothers around a large table at dinner, and each was allowed to ask Mother Teresa one question.
“By the time it got to my turn, all the questions had already been asked, so I asked her, ‘What’s your definition of prayer?’” he said. “She moved down close to me and looked right through me, and said, ‘Listening.’”
Compassionate listening is an integral part of the Hospice philosophy. The Vineyard organization offers personalized care at home, in the hospital, or at extended-care facilities. Registered nurses provide palliative care and collaborate with the patient’s own doctors. There’s a chaplain, counselors, and trained volunteers to support both patients and their families and friends.
Executive director Tom Hallahan explained that Hospice of Martha’s Vineyard is supported financially by the community, and by grants and bequests. This allows Hospice to provide services at no cost, and the organization operates without the restrictions and paperwork that come with Medicare. Hospice of Martha’s Vineyard is one of only a handful of Hospice programs in the country that operates as a nonprofit supported entirely by the public, and the organization can accept both those who have just gotten their diagnosis and those who are in the final stages of life.
“People think Hospice is for when they’re dying or ready to die,” Mr. Hallahan said. “Hospice is part of that, but it allows you to live the life you want to live as best you can until you’re ready to die. So it’s really about living.”
The numbers of people dying on the Vineyard increases every year, he said, and last year Hospice of Martha’s Vineyard took care of about 45 percent of those who died.
“We have people who come here on the day of their diagnosis,” Mr. Hallahan said. “They’re looking for guidance; life as they know it is falling apart. Eventually they can’t work, maybe they can’t continue to live where they’ve been living. We help them here, and connect them with other organizations like Elder Services, the VNA, Vineyard Village at Home — there are so many support services on the Island.”
The staff and volunteers have a unique role in the lives of the people they assist. They are with them throughout their journey, up until the final goodbye.
“Our counselors and nurses go to the funerals of all of our clients,” Mr. Hallahan said. “It’s a really beautiful commitment the staff has.”
Hospice is not only there for those who are in the process of dying, but they also offer grief counseling and assist caregivers and families.
For now, Lori Perry will continue to visit the Rev. Schule, coming more often as it becomes necessary.
“It’s been an honor to be his nurse,” Ms. Perry said. “I feel so privileged to do this work. They let you into their lives at such a personal, intimate time, and I’m so privileged to have the grace to hear their stories.”
These days, the Rev. Schule said there isn’t much he can do besides reading, writing, painting, and continuing to practice his “attitude of gratitude.”
“My family and friends, I could not praise them or thank them enough. There are no words,” he said.
To support Hospice of Martha’s Vineyard, or to find out more about services offered, call 508-693-0189 or visit hospiceofmv.org.