Sam Adams begins each morning the same way. He rolls out of bed and walks over to the west-facing window in his Rainbow Motel studio in Bend. He parts the curtains and then raises the blinds to let the light in. Then, he tilts his head and eyes up toward the sky.

“And I say, ‘Good morning, God,’” said Adams, 46. “Then, I listen.”

Surrounded by his belongings, which include a San Jose Sharks hockey jersey with his name above double zeros on the back, and a gag can of Whoop-Ass atop a mini fridge, Adams described himself as a child of the light.

“God is my best friend,” said Adams. “I feel him smiling down on me. That’s why I look up when I talk to him.”

Listening to Adams speak — he’s almost always smiling, cracking jokes, offering compliments — it’s hard to grasp the hand he’s been dealt, his struggle to stay upbeat and upright.

Adams was diagnosed with Huntington’s disease, a hereditary, terminal disorder that attacks the brain, when he was 30. Since then, a series of personal calamities has unraveled the life he once knew.

He’s endured bouts of homelessness, let go of the love of his life, and battled addiction — all while his mind and body slowly degenerate. Faith, he said, and palliative care have kept him going.

Paradise on earth

Born and raised in San Jose, California, Adams traveled to Bend in 2000 to visit a friend — and he never went back.

“When I got here, I had found my paradise on earth,” said Adams. “San Jose is the concrete jungle, where everybody’s in a rush, and everything you see is gray or brown. When I got to Bend, all I could see was green grass, trees and flowers. I felt right closer to my creator when I got here.”

After working at a number of fast food restaurants, Adams said he found his calling when he began working security for concerts and other events in the area.

“I love the energy you get from concerts,” he said. “I love the energy you feel when you’re moshing or in the middle of a fight. There was no UFC when I was growing up, so I always felt a sense of shame about it. Working security gave me a way to earn a living and an outlet for that energy.”

But Adams began abusing alcohol, occasionally mixing it with cocaine or crystal meth. That combination led to a loss of control, Adams said, and he was arrested on assault and conspiracy charges in 2005. He spent two-and-a-half years in prison after accepting a plea deal, which led to a personal breakthrough.

“When you’re in prison, it’s everybody’s fault but your own,” Adams said. “During my time in Powder River, I learned to accept that many of my problems are the result of my choices. Once you accept that, the lies fall off like scabs.”

The day he was released, in 2007, he laid eyes on Kristin Marie, who would become his wife.

“I saw her across the parking lot at the Bethlehem Inn, in Bend,” Adams said. “It was like lightning struck. Time stopped. We started dating a week later, and we were inseparable after that.”

In 2012, Adams, Kristin and their two sons moved into a house situated in the Nottingham Square neighborhood in Bend.

“Those were the most peaceful, happy years of my life,” Adams said, becoming still for a moment, remembering. “That was also the year I was diagnosed with Huntington’s disease. Everything changed after that.”

Paradise lost

As Adams tells it, he was lying on the couch one day, his feet resting on Kristin’s lap, a daily ritual they enjoyed together.

“She asked me to stop shaking my feet,” he said. “I said, ‘I’m not shaking my feet.’ Then, when I looked down at them, I saw that they were shivering like they were extremely cold.”

Adams said that the timeline after that becomes fuzzy, as he was drawn into a whirlwind of doctor’s appointments and prescription drugs. There’s no cure for Huntington’s disease, which attacks areas in the brain responsible for voluntary movement.

The disease’s symptoms, which include chorea (uncontrollable dance-like movements), and dyskinesia (twitches, jerks and spasms) were mild then, said Adams.

In addition to the physical symptoms listed above, the disease causes cognitive changes like difficulty making decisions, solving problems and learning new things. It can also cause increased moodiness, which Adams said impacted his marriage.

“But Kristin never complained once in five years,” he said. “She promised to care for me until the end. But I didn’t want to be a burden to her, so we decided to divorce.”

That was around 2015. The rent for the Nottingham Square house had risen from $1,050 to $1,550 during that time, and the Adams family struggled to make ends meet.

“We were drowning in credit card debt,” Adams said. “We just couldn’t continue like that.”

After the divorce, Adams returned to the Bethlehem Inn, a homeless shelter. But he was determined to find a stable home, even as his condition would make doing so increasingly difficult.

Seek and ye shall find

Through all that, Adams insists that he’s blessed. He credits Shepherd’s House Ministries, which offers an array of services to help those experiencing homelessness and other life-changing challenges, for providing a safe place to sleep and store his belongings.

After spending five years in the men’s program, which is meant to help participants heal and free themselves from pain and addiction, he was offered the room he’s in now, at the Rainbow Motel. That’s the motel’s former name. Today, it’s known as the Franklin Avenue Shelter and is run by Shepherd’s House.

Charles “CJ” Dezort is the director of Franklin Avenue, a shelter for vulnerable adults and families, including their pets. But Dezort doesn’t like distinctions that seek to separate members of a family.

“We ask how many heartbeats will be joining us,” said Dezort, smiling, his icy blue irises sparkling through squinted eyelids. “Unlike many shelters, we also accept animals. We have about 67 human heartbeats here today, 19 of them belong to young people, and five are receiving specialized medical care.”

Those five heartbeats represent a population that’s rarely mentioned in the media. That is, people who are battling chronic health conditions and homelessness at the same time.

“People who belong to that group don’t receive the care that they need, because home healthcare professionals can’t practice medicine in a tent,” Dezort said. “We take the hard ones, the ones who slip through the cracks.”

For that reason, data on homeless people who receive palliative care (which is designed to improve the quality of life of patients and their families facing problems associated with life-threatening illness) or hospice care (which seeks to relieve pain and suffering when a patient is near death), is sparse.

Yet, the need for those kinds of care exceeds available resources. Adams is sheltered, so he receives palliative care, which includes weekly visits from a pair of nurses and a physical therapist.

Adams said that’s made all the difference in his quality of life.

“I’ve fallen like, 80 times in the past year,” he said. “If I was in the streets, I probably wouldn’t be alive.”

For those who are unsheltered, Dezort said the paths to Franklin Avenue vary. But people find their way there primarily through referrals.

“They wind up in the hospital, and an advocate will call us,” said Dezort. “We’ve got a waiting list, and it keeps getting longer, sadly. The hardest part is saying ‘no.’”

Blessed

Adams’s Rainbow Motel studio will become available soon. Through working with Dezort and other Shepherd’s House staff, Adams is the first resident to be offered a room in the newly opened Cleveland Commons. The primary difference between the two lies in Adams’s ability to call the latter his home.

“This will be a big step for Sam,” said Dezort. “He’s going to go from living in a stopgap shelter situation to being a rent-paying tenant. He’s going to know the stillness that comes with having his own place. A whole new world of possibilities will be open to him.”

The first permanent supportive housing facility in Bend, Cleveland Commons will offer 24/7 supportive services to people deemed chronically homeless, which often includes a disability of some kind. The project came to fruition through collaboration between Shepherd’s House Ministries, Housing Works, the city of Bend, FUSE, Neighbor Impact, Deschutes County and Oregon Housing and Community Services, among others.

There are 33 units in the three-story building situated off of Southeast Cleveland Avenue. Of those, three are ADA compliant, with one on each floor.

While Adams could have chosen an apartment on the third floor, which has an enviable view, he chose the apartment on the first floor.

“That apartment is the closest to his support system,” Dezort said. “The nurse that cared for him at Franklin Avenue is on staff at Cleveland Commons, too. He’s putting his wellbeing first.”

Though he’s chosen his apartment, Adams said the move doesn’t feel real, yet.

“It doesn’t feel real, because I’ve been through so much to get here,” said Adams.

When asked why he’s so open to talk about his struggles, especially the disease that upended his life, Adams paused for a moment.

“Some people try to hide their illnesses and weaknesses because they’re ashamed,” he said. “Not me. I like to talk about my illness, I like when people ask me about it. It makes me feel less alone, more human.

“That’s also why I don’t have venom for anybody,” Adams added. “My time on earth is limited. I don’t want to break people down, I want to build them up. I’m blessed.”

Adams said his bedtime ritual is similar to mornings, but in reverse. He gives thanks for his blessings before bidding God goodnight. Adams listens for a moment, then he lowers the blinds and closes the curtains.