MASTERING BARRIERS
A Burlington man with MS earns a master’s degree from a hospital ICU,
From almost dead to a master’s degree, Paul Benson has taken a long, difficult route to higher education.
The 66-year-old recently graduated from Athabasca University. He received his master’s in education from the Alberta-based, online distance educational institution.
Aside from his age, that might not seem like anything out of the ordinary, but consider that Benson’s grad ceremony was held at Joseph Brant Hospital in Burlington.
Oh, and his “classroom” for about the last year of studying was a room in the Intensive Care Unit at the lakeside hospital.
His “desk” was a special chair equipped with technology that allowed him to use a computer despite almost no mobility save for his head and a bit of movement in his arms.
Before that there was the issue of him almost dying.
Suffering from late-stage multiple sclerosis (diagnosed in 1976; in remission from 197795) and multifocal motor neuropathy (diagnosed in 2006), Benson had been living in the Brant Centre long-term care home, adjacent to Jo Brant Hospital, for about 18 months when he aspirated (breathing complications) on April 9, 2017, and was found unresponsive.
“I was rushed to the emergency department at Joseph Brant Hospital and then transferred to the ICU,” Benson recalled.
“For a week or so I was heavily sedated and the (medical) team walked a tightrope to bring me back. I woke up one morning to a nurse saying, ‘Welcome back, Paul.’
“This was the first day of my new life.”
He was grateful to be “cognitively intact,” although he required a ventilator to support his compromised lung function. He had a tube down his throat (tracheostomy) and needed a small plastic device (Passy Muir valve) to enable him to speak.
Essentially a quadriplegic, Benson required a mobile wheelchair, the ability to control it and, most important to him, the technology to allow him to continue reading and “writing” — for his pleasure and to quench his desire to pursue post-secondary studies.
Among the assistive technology that has proved to be indispensable to Benson is a wireless, head-controlled mouse.
It replaces the standard computer mouse for people who cannot use or have limited use of their hands. A Tracker Pro head-mouse translates movements of Benson’s head into mouse pointer movement.
He can also use his left arm enough to initiate a left click on the computer screen. He has splints on each arm to improve limited finger movement.
Benson’s speech dictates text and controls some aspects of his computer; he’s able to select items by voice via Dragon Naturally Speaking software.
“The first important piece was the Passy Muir valve. Up to then (hospital staff ) didn’t know he had an accent,” Thelma Reynolds, Benson’s younger sister, jokingly told the Post while standing beside her brother in his ICU room.
The valve redirects airflow through the vocal folds, mouth and nose, enabling voice and improved communication. The part’s manufacturer says it also improves swallowing and oxygenation.
Benson, a former resident of both Oakville and Milton, says that upgrades to his wheelchairs over time have been through “considerable support” from the March of Dimes and the MS Society.
The charity Ceridian Cares provided him with portable suction equipment and a battery-operated compressor for when he is mobile outside the hospital.
Put all the hardware and software together and it gives Benson what he needs to explore the outside world while mainly remaining in the confines of the hospital.
“I describe myself as probably the only person to be happy to be in the ICU,” he says.
One of Benson’s external influences and inspirations is Canadian educator, activist and writer Catherine Frazee.
“I applaud her work in spreading the message of just what is possible regardless of the barriers that those labelled as ‘disabled’ may face,” he said of Frazee, who appeared in the 2006 National Film Board of Canada documentary Shameless: The Art Of Disability.
“I think Catherine is an inspiring person, and she has been leading the fight for a new view of those with disabilities and their ability to contribute in their communities when barriers to participation are reduced or eliminated,” Benson said.
Now he wants to do his part to encourage others with limited mobility.
“(I’m) sharing the message that so many possibilities now exist for people to interact with the world through appropriate use of advanced technology, even from a hospital room. Many more opportunities now exist to pursue meaningful ac- tivities with these kinds of support mechanisms, and the right team behind you,” Benson told the Burlington Post in an email.
“I feel that sharing this information is important so that more people become aware of what they can accomplish despite the challenges they may be facing. I hope that this focus on supporting the whole patient will become an increasingly common feature of longterm hospital care.
“My care team is now used to setting me up in my wheelchair, with my computer in front of me, so that I can get on with my ‘work day.’ ”
Still, it took Benson a long time to realize his academic goals.
When he was a young adult in his native England he “flunked out” of a mechanical engineering program. Subsequently, in his final year at another English school he got sick and had to leave. At age 25 he was diagnosed with MS.
“I was told to find a job I could do from a wheelchair.”
He eventually got a certificate in computer programming and then a diploma in accounting and finance, all done in Britain. Much later he earned a certificate in adult education from Brock University at Sheridan College.
His biggest academic achievement, the master’s degree, was earned over more than a decade, mainly between 2007 and 2011, Various health issues forced Benson to abandon his studies between 2011 and 2016.
In 2011, he said one of the most significant developments was having to give up driving a car “as I changed ‘vehicles,’ ” switching to a wheelchair.
Benson was in a position to resume his studies in late 2016.
As he finally approached the end of his master’s degree studies, his professor at Athabasca University was prepared to exempt him from doing the final task in the program, a one-hour presentation, but Benson didn’t want special treatment.
“I was absolutely prepared to present. She was concerned my voice wouldn’t hold up.”
He said that with the help of his personal support worker, Jacqueline DeRubeis, he got through it.
“She helped me with my last course. If I had computer issues or had documents that needed scanning,” DeRubeis did it, he said. “From desktop to laptop, she set up everything for me.”
Benson’s U.S.-based sister Thelma Reynolds, who spent six weeks by his side after his crisis at the Brant Centre, said she was amazed that her older brother was able to get into long-term care quickly and at the level of ongoing care he receives at Jo Brant.
She’s particularly impressed by the work done on his hands and arms by his by physiotherapist.
“I know we wouldn’t get (all) this in the (United) States. We’d all be bankrupt,” Reynolds said.
She’s not surprised that Paul has earned a master’s degree from his hospital room.
“He has a brain and a half and a memory that keeps going.”
Benson presented the final task for his master’s degree from his chair in his ICU room on March 19. He passed.
His graduation ceremony was set for June 8 at Athabasca University in central Alberta, but that wasn’t a viable option for Benson due to his need for a wheelchair and other medical considerations while flying.
So the hospital’s ground floor acted as his grad venue on May 25. Benson was decked out in a traditional graduation gown while a group of family, friends and hospital staff attended. What’s next for Benson? He figures he might as well work on a second master’s degree.
He has enrolled in Athabasca University’s Integrated Studies program; he begins this September.
“I now wish to learn more about how to advocate for those who have not been as lucky as me, and who currently face barriers to achieving their goals,” Benson said.