Father and son team up to get degree, and help others
Saturday, May 19, 2012
SPOKANE — When Ryan Sutherland wanted to go to college three years ago, his father, Steve, went with him. Not just for a visit, but to stay. The father and son, from Cashmere, have been dorm roommates at Whitworth University in Spokane since Ryan started there in 2009.
Ryan graduated with a bachelor’s degree in psychology May 13. That’s no minor accomplishment for the young man with Duchenne muscular dystrophy, a disease that normally cuts down its victims by his age of 22. Ryan is a quadriplegic, with very limited use of only his right hand.
He’ll continue at the school another semester to finish his theology minor and earn a certificate of ministry. He’d like to earn a master’s degree in theology.
“That’s a ways down the road. We’ll see how that works out,” he said with a wry smile that made it clear the timeline for his future is out of his hands. As he made his way between classes in a motorized wheelchair one day last month, dozens of Whitworth students — nearly everyone who passed — greeted him and his father with a “Hi Ryan. Hi Steve.” Some students stopped to give Ryan a hug or walk with them for awhile across the pine tree forested campus.
His time may be short, but Ryan said he still has much to do. Propelled by his battery-powered wheelchair and an inner drive to help, he makes use of his handicap and faceoff with death to inspire and counsel.
It’s a mission he’s taken to heart and has already taken on as his life’s work. He counsels residents at an assisted living home in Spokane as part of his theology classes. He counsels acute care patients at Cascade Medical Center in Leavenworth where his father works and the homeless poor at the Lighthouse Mission in Wenatchee.
Earlier this year, he interned as a guidance counselor at Cashmere High School, where he graduated in 2007. His parents live on Pioneer Avenue in Cashmere. He’s a confidant to many of his fellow students at Whitworth. Those students and teachers say his gentle, caring spirit is an inspiration.
“Ryan is a very good listener,” said Brad Buff, his teacher in a certification of ministry class and the chaplain at the Rockwood at Hawthorne Retirement Community, an assisted living facility close to the campus. His obvious handicaps seem to make it easier for him to create trusting relationship with elderly residents dealing with their own losses, Buff said.
Another teacher, Kathy Storm, added that Ryan and Steve have a quiet, gentle and wise presence that is an important addition to the campus.
“Ryan has a way of bringing people out. He speaks about his own dark passages with honesty and vulnerability in a way that is inspiring. He invites people into a deeper sense of being human,” said Storm, who had Ryan as a student in her philosophy class and is also the school’s vice president of student life, pretty much everything that happens on campus outside of the classroom.
“Their presence is a remarkable commitment to learning and to our community. Ryan is much loved and respected here, but so is Steve,” she added about the father and son team.
The two have shared a simple 10-by-20-foot dorm room with two bunks, a closet, desks and bookshelves the past three years. Steve helps Ryan get to class each morning and get to bed each night. That’s no small chore. Ryan is a fully grown 140-pound man with no ability to move himself. Steve uses an electric crane to lift his son in and out of bed and scoot him down the hall to the shower each morning. He brushes Ryan’s teeth, assists him in going to the bathroom and feeds him meals, bite by bite, usually in the student cafeteria.
Steve often attends classes with Ryan to take notes, sometimes forgetting he’s not a student and raising his hand to participate. Later he helps Ryan get his homework onto his computer. Class outlines are taped up on the walls of their dorm to remind them both when assignments are due.
“I had to learn to be a more organized person. He had so much to do,” he said.
The pair are like riders on a tandem bike, Ryan steering and Steve providing the power, pedaling their way through challenges.
“No,” Ryan corrected, “he’s the sun for our solar-powered electric car.”
Things have become much easier the past two years, Steve said. Ryan has many friends eager to help him with school work, to cut up and feed him his dinners and assist him with his personal hygiene.
Advancing technology in the form of E-books, voice-activated computer programs and a smartphone have made it easier for Ryan to do his class work with little assistance. Muscle deterioration recently robbed him of his ability to use his left hand to text, essential to any student. But his new iPhone will do it for him at his voice command. Ryan has full control of his voice and his mind. His muscles can’t move his body, but he is still sensitive to touch.
Going to school with his son may seem an unusual and grand gesture, but Steve said it was an easy decision to make. It’s turned out to be tremendously rewarding and even fun. Steve goes for a run each day and often has free time to sit in on classes and lectures of his own choosing. Most of all he relishes time with his son. Many days, Steve whisks Ryan away in the family van for a picnic lunch between classes at some new unexplored spot on campus.
“We value and guard our time together. We don’t know how much time we’ll have. We made the decision early on that we wanted to spend it together. It’s been a gift,” Steve said about his time with his son.
Ryan was 4 years old when his parents noticed that his physical development was behind that of other boys his age. They were puzzled by his worsening condition until a specialist they went to diagnosed Duchennes muscular dystrophy, a debilitating disease with no known cure. The disease causes the body’s muscles to degenerate over time, affecting shoulders and thighs first and finally the heart and respiratory system. It’s caused by a flawed gene’s inability to make a protein responsible for muscle strength.
“It’s like missing the studs in a house,” said Steve. People with the disease usually die in their 20s of pneumonia as they lose their ability to breathe. Ryan has had operations to fuse his spine so he can sit upright and slow deterioration of his respiratory and digestive systems. That could help him extend his life a few more years.
“To suddenly have our beautiful son be given a death sentence — it was pretty shocking,” said Ryan’s mother, Debbie, who found out she was the carrier of the genetic disease. About 1 in 3,500 children are born with the disorder, limited almost entirely to boys. Ryan’s older brother, Jared, does not have the disease.
The family has tried everything to slow the disease. They took Ryan to China when he was 8 years old for three months of alternative medical treatments. The treatments initially helped him gain muscle strength, but two years later he was forced to use a motorized wheelchair to get around.
What is muscular dystrophy?
Muscular dystrophies are inherited genetic disorders that cause progressive muscular deterioration and declining muscle strength.
Duchenne muscular distrophy — the type Ryan Sutherland has — is one of the most deadly. Symptoms begin to show up at age 3 or 4. The child loses the ability to walk usually between the ages of 7 and 12. By early teens, the heart and respiratory muscles can be affected. Most die by age 30, usually due to respiratory failure.
The disorder affects boys almost exclusively. It strikes 1 out of every 3,500 boys. The disorder is caused by a flawed gene that controls the manufacture of a protein — called dystrophin — that is essential to muscle strength.
There is no known cure.
Source: The Muscular Dystrophy Association
That didn’t stop him. He was an honor student at Cashmere High School, where he played trumpet in the school band. He sang in the choir and acted in school plays. He was an active Boy Scout and earned his Eagle rank by organizing construction of wheelchair ramps and benches at the Cashmere Pioneer Village & Museum to make it handicapped accessible.
His family has been there for support. His mother ended her stockbroker career to become a teaching assistant in Ryan’s classes and to care for him at home. His brother — now going to medical school in Vermont — has been his arms and legs when needed to get a task done. He welded him a stand to hold his trumpet on his wheelchair so Ryan could play in the school band. His father became a scout leader and later served on the Cashmere School Board to guide Ryan through his teens.
To find out more about muscular distrophy, check out these websites:
Parent Project Muscular Dystrophy, endduchenne.org
Muscular Dystrophy Association, mda.org
“It’s been a family event. We’re all connected,” said Steve. “We moved beyond thinking when our life would begin to be normal. We’ve had to reset normal.”
“Ryan’s life is our life too,” added Debbie.
Ryan attended Wenatchee Valley College for a year after high school, but wanted something more challenging. He was losing his ability to breathe on his own — he has about one-eighth of normal lung capacity and now uses a ventilator at night. His high school friends had all gone off to other colleges. He became depressed and anxious about what to do in his remaining time. He wanted to continue to live life as normal as possible and to continue his education so he could use his handicap to help others.
The family started looking at colleges, deciding on Whitworth University in Spokane because it was close and has a great reputation for faith-based education. The Presbyterian college also has a compact, flat campus, which would make it easier for Ryan to get from class to class. The school is small, less than 3,000 students.
“I wanted to stay in the dorm to get the whole college experience,” said Ryan, who credits his faith in God along with his family for helping him achieve his dreams.
“It used to be scary, but I know God has a plan. I try not to think about death that much. It’s our faith in God that gives me the strength to look forward to doing things that seem impossible.”
Debbie had originally planned to live with her son in Spokane, but his desire to live in the dorm added complications to that idea.
As it turned out, Steve’s job as a pharmacist at the Wenatchee Shopko was coming to an end. His brother, David, was also about to have his pharmacist job phased out at Food Pavilion. The two decided to share a job offer at Cascade Medical Center. That allowed Steve to live in the dorm with Ryan during the week and work weekends and during school vacations in Leavenworth.
Ryan wore his cap and gown and rolled down the aisle to receive his diploma last Sunday, but he will continue to take classes next fall to finish up his psychology major and theology minor requirements. The family celebrated Ryan’s 22nd birthday Friday.
“It’s been a chance to embrace life,” Steve said about the time with his son. There have been many traumatic moments over the years as Ryan’s condition worsens, but the family has always risen to the challenge and been able to find deeper meaning in their relationship, he said.
“It would have been easy to crawl into a hole. But we also knew this was a chance to be an inspiration for others,” he said.
For Ryan, going off to college has been a time for him to learn how to interact with others and use his handicap to help.
“One of my goals is to reach out and break barriers,” said Ryan. “There’s so much more joy in life in reaching out. It’s important to show vulnerability. I could be defined by my illness, but because of God I choose not to. One of the keys of scripture is building relationships. So many people have issues that they don’t talk about. With me, it’s obvious. I don’t have a choice. I try to use my vulnerability to inspire others to reach out. Some kids don’t let it out. But I have Christ to hold me up.”
Ryan said he accepts his life as it is. But he misses hanging around campus on weekends when parties, sports events and dances are more likely to happen. The fun parts of college. Steve drives him back to Cashmere each weekend to spend time with Debbie and so Steve can work at the pharmacy.
“I wanted to be more on my own. We’ve had some talks about that. Living this close, there are times when we disagree. Dad knows when to step back,” he said.
There’s some midweek fun to be had. Tuesday nights are a special time on campus. Many students gather in the chapel to sing religious songs accompanied by a rock band and discuss questions about their faith.
Ryan takes off on his own those nights. He wheels his chair over the tree-lined walkways in the dark. Friends from other dorms join him along the way. They open the chapel doors for Ryan. When they gather in small groups to talk and pray, those with Ryan stand rather than sit like the other groups. They want to be on the same level with the wheelchair’s high perch so Ryan can hear the discussion better.
Once the singing begins, all stand — except Ryan.
“Arise, arise,” they all sing to piano, electric guitars and drums. “We lift you up on our praises.”
Rick Steigmeyer: 664-7151
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