Sunday, July 03, 2022|
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Editor’s note: This is the first story in an occasional series about Daniel “Morii” Schwinn, who is terminally ill.
He and his spouse, Shari, invited Tribune-Herald reporter Jeff Hansel and photographer Hollyn Johnson to share the couple’s journey with readers.
Morii has less than six months to live. As his story unfolds, readers are encouraged to talk with their own loved ones about death and dying. The newspaper plans to update readers about the challenges Morii faces.
Director and documentary filmmaker Daniel “Morii” Schwinn of Hakalau has long controlled his own environment.
As a director, he’s supposed to know the answers. He’s expected to take charge.
But Morii, 64, must now relinquish some of the control that helped him thrive — because he is dying.
He was diagnosed in the spring of this year with squamous cell carcinoma, an invasive form of skin cancer.
“My cancer has metastasized into my bones, so it’s incurable,” Morii said.
He and his spouse, Shari, began receiving guidance from Kupu Care, a service offered through Hospice of Hilo.
Kupu Care serves people such as Morii who have cancer or congestive heart failure. Like hospice, it offers choices about medical and situational quality of life options. Having choices restores a sense of control to the patient and their loved ones.
As a documentarian, Morii said, “you never know where your journey is going.”
That, he said, is similar to how he feels about the dying process. He’s going forward day by day, but doesn’t know what’s ahead on the path.
“Acceptance,” said Hospice of Hilo Clinical Relations Manager Lani Weigert, “is almost like a daily ritual” during the dying process.
A person gets used to a way of life, and then something happens to change their comfort level, physical ability or access to medicine, food or repairs for something simple, such as a screen door. That changes a person’s experience and requires new levels of calm and acceptance.
Although Morii believes in Western medicine, he first wanted to try alternatives for pain control.
For a current film project, he visited children with cancer pain that’s beyond the ability of standard medicine to curb. He tried medical marijuana himself, which he focuses on in the film. But it wasn’t effective for his pain, which radiates outward from his bones. He then tried other alternative options but began losing weight, dropping from 205 to 155 pounds.
“I thought that was going to kill him, starving to death,” his wife said.
But his request for Western medicine from Kupu Care led to a drug typically used to help people stop using narcotics. Morii appreciated that an effective substitute was found quickly. His weight climbed above 170 pounds, and he has continued to work, despite his illness.
Morii’s trying to get ahead on his current projects “so that I can just really soar” later, when his body is no longer able to cooperate.
He’s doing what he calls “soul work” to leave a video tale for those he loves.
“It’s really to have treasured memories for my family, friends and caregivers,” he said.
Morii is well-known on the Big Island for his media campaigns for the University of Hawaii at Hilo and Hilo Medical Center and Hilo International Airport’s “Discover” campaign.
During a recent Kupu Care visit, Morii quietly took a seat near his wife as they welcomed a guest to their Hakalau-area home.
Recipients of Kupu Care — currently available from Laupahoehoe Point to Ka‘u — often appreciate the guidance their loved ones receive as much as the pain relief and assistance the patient gets.
Guest Rebekah Bernard introduced herself, explaining she’s a Kupu Care spiritual counselor. Bernard is one of the staffers helping Morii wind his way through emotions, medical appointments, goodbyes and keeping focused on quality of life despite his terminal diagnosis.
Bernard checked his wife’s needs as she grapples with her life partner’s experience. Bernard offered her card in case Shari needs to talk in the days ahead.
People such as Morii and his wife get help so they can focus on life instead of dying. Or, perhaps, on living well while dying well. Transition to hospice will happen if Morii’s needs grow.
Pain management is at the core of Kupu Care for such individuals, Bernard said.
“If you don’t have that under control, the patient deteriorates, as well as the family,” she said.
The learning curve was quick for Morii and his wife as they figured out how difficult it is for people in genuine need to obtain narcotics.
Morii had typically received treatment while traveling on the West Coast. But he realized he’ll need a physician on the Big Island as his ability to travel is curtailed. Every physician he sought out turned him down as a new patient, his wife said, because he needs prescriptions for narcotics.
“My body is crying out constantly, and it’s only the pain medications that help,” he said.
His wife went to her own longtime physician and “basically just begged her to take Daniel.”
Her practitioner agreed.
Now that Morii has a Hilo physician, his spouse said he’s happiest “when he’s just really busy.”
“I don’t know what’s going to happen when he reaches the point where he can’t do that,” she said.
Facing the unknown is one of the most difficult aspects of the dying process for loved ones who must carry on after the individual dies. Morii’s wife worried aloud during the Kupu Care visit that “his death has now become another project.”
Projects, of course, are what Morii knows best — and is able to handle.
Kupu Care patients can be visited by a nurse, social worker or spiritual counselor.
“The nurse is there to ask, ‘Are you in pain?’” Bernard told the Tribune-Herald. “The social worker is there to ask, ‘Are you suffering?’ and the spiritual counselor is there to ask, ‘Are you at peace?’”
Morii expresses a sense of calm about his journey.
“I’m totally engaged. I’ve got my film crew out in California so they can be out filming,” he said. “And I’m continuing that, so I’m engaged.”
Morii said he wants the community to talk about death and dying.
“My life is an open book,” he said, describing his reason for sharing his story publicly.
“It just feels like the right thing to do. That’s the way my life has started shifting. I feel like my life is in this new orbit of syncronicity and serendipity. I do have a sense of inner peace about it.”
Email Jeff Hansel at email@example.com.
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