FINISHING THE RACE

A QUESTION OF PLUMBING

After his wife called 911, she asked Edgley questions he couldn’t move his mouth to answer. The paramedics did the same. As they wheeled him into the ambulance, he wondered if this was the last time he would feel the sun’s warmth on his face.

Edgley rode to the hospital, lapsing in and out of consciousness. He understood what had happened.

The young man had graduated from medical school at Loyola University a few months before. Then in his first year of residency in ophthalmology at AMITA Health Resurrection Medical Center in Chicago, he knew how devastating a stroke could be on the mind and body.

“I was trying to imagine a path forward with my right side and my speech totally gone,” Edgley said. 

The original definition of a stroke essentially refers to an act by God. Like being struck by lightning, the stroke suddenly and often permanently changes someone.

Only about 360 years ago did Johann Jakob Wepfer, a Swiss doctor who performed autopsies, describe how bleeding in the brain could cause a stroke. His 1658 groundbreaking treatise, “Historiae apoplecticorum,” is still referenced today.

The clots and leaks in the brain are “a simple plumbing problem,” Edgley said.

As it turns out, his own plumbing problem related back to a common congenital variant and a slight clotting disorder that he never knew he had. His chance of having a stroke was about 1 in 10,000.

Twelve years later, a patient named Brian Hultman arrived at University Hospital after suffering a stroke similar to Edgley’s. Hultman was in the midst of the LoToJa—a 200+ mile bike race from Logan, Utah, to Jackson, Wyoming—when his stroke hit.

Instead of crossing the finish line, Hultman began months of rehabilitation to recover use of his right leg and arm. Edgley was his doctor, and the physician saw something of himself in his patient. He understood what it was like to be a young, athletic person struggling to regain his life. If the mind gravitates to stories, this was one he knew well.

“When you feel ready,” the doctor said. "I want to participate in finishing your race.”

LIFE SAVER

Hultman doesn’t remember exactly when he first met Edgley. It was sometime in the swirl of hours and days after his Sept. 7, 2013, stroke, after an ambulance sped him from Wyoming to University Hospital in Salt Lake City.

Hultman, a deputy county attorney, was riding his bike in the LoToJa race for the tenth and what he thought was the final time. Then 45, he was hoping to spend more time with his three kids and less time training on his bike.

With 69 miles left to go, Hultman started seeing square roots and decimal points in the air. He shook his head. Then he blacked out.

He woke up to a Wyoming State Trooper asking him if he was alright. Hultman’s words sounded like gobbledygook. His hands were still on the handlebars, but he didn’t know why his bike was on the ground.

The next thing he remembers is waking up at Star Valley Health, a hospital in Wyoming, where they cut off his bike jersey and he received tPA. Hultman kept coming in and out of consciousness. He recalls looking out the window of an ambulance and then nothing until he woke up two days later.

Surgery in Salt Lake City removed three clots from his brain. As friends and family came to visit, Hultman was just happy to be alive.

Edgley, whose job as medical director of Stroke Rehabilitation at University of Utah Health is to keep medically complex patients stable enough to participate in rehab, coordinated Hultman’s care during his three-week stay in the hospital. Hultman’s right leg and arm didn’t work. His speech was slow and plodding.

Edgley, who still dreams of running as easily as he did before his own stroke, works with a team to create the rehab plan patients may use for weeks, months and even years ahead.

As with all his patients, Edgley asked Hultman to consider short- and long-term goals. Though he could barely speak and was paralyzed on the right side, Hultman said he would like to bike again. Edgley encouraged him.

Cycling on two or three wheels is an activity stroke survivors can often excel at. And Edgley knew from his own experience how important it can be for athletes to get back to activities that help them thrive.

“I encourage and promote overcoming challenges … that is the definition of strength,” said Edgley, who admits one of the highest number of patients of any doctor at the hospital.  “The body will eventually break down for all of us. All of us are going to succumb to death, but overcoming challenges while we are here–Rising; Rising–is what leads to growth and success.”

At University of Utah Health, the most popular adaptive recreation activity for stroke survivors is a recumbent tricycle.

Riders wear special shoes that attach to the pedals, so the patient doesn’t have to worry about his or her weakened foot or ankle. Being connected to the bike or trike means the rider has more power with each push of the pedal.

“They can work up a sweat, doing something in the outdoors, often for the very first time since their stroke,” said Edgley.

What was different about Hultman was how he refused to let the stroke define who he was—just as Edgley had years before. The two men were both athletes, similar in age, and had experienced a similar stroke.

Though he's grateful to the doctor that removed the clots from his brain, Hultman feels that it's ultimately Edgley who “basically saved my life.”

“I’ll probably have a lifetime of having a long way to go, but I have the right attitude and I think the attitude came from Dr. Edgley,” he said.

Yet, as Hultman recovered and began training for the bike race, he was the one guiding the doctor forward.

The doctor had returned to many of his athletic endeavors, but riding nearly 70 miles with Hultman to Jackson Hole in a race was further than he had ever biked before. It required serious training.

“The patient was now helping me with something I wanted to do,” Edgley said.

KEEPING HIS FAITH

For many patients, as with Edgley, their spirituality buoys them in what may be the darkest time of their life. 

Edgley, who is a member of The Church of Jesus Christ of Latter-day Saints, was overwhelmed by questions he initially could not articulate and questions that perhaps had no answer. He wondered if he would ever speak again. 

In the days and hours that he had to think in silence, he decided he might not understand why the stroke had happened to him, but God had not abandoned him. 

“God was no longer the controller of my afflictions; rather, He was that Being who hath borne our afflictions and grief, my afflictions and grief,” Edgley wrote in his memoir “Life Between Two Gardens.”“I was able to view God not as the Organizer of my suffering, but rather as the champion of my cause and eventual recovery.”

Though he had lost control of his body, he had kept his faith.

As the months passed, Edgley felt an urgency to return to work. He feared his support in the medical community—from other physicians and hospital administrators—would fade. 

A six-hour cognition test showed he was mentally fit to do the job, but Edgley still struggled to speak clearly and use his right hand.

Though he regained much of the strength in his right leg and arm, lingering weakness in his right hand forced him to do most things with his left. Despite hundreds of hours of therapy, he could grip things like a water-ski handle with his right hand but he couldn’t use a pencil.

So, he looked for solutions. If he couldn’t write fast enough with his non-dominant left hand, perhaps a machine could help.

The growth of technology has transformed stroke patients’ ability to communicate.  Even in 2002, in the early days of voice recognition software, Edgley’s laptop could be used to dictate patient histories rather than slowly taking notes with his left hand—or typing one-handed. 

His ophthalmology residency spot already taken, Edgley considered specialties that didn’t require as much work with his hands: radiology, radiation oncology and cardiology. Ultimately, he landed on a physical medicine and rehabilitation residency, a field that encompasses everything from sports medicine to brain injury.

Working became his new therapy as he found ways to accommodate his impairment. It was treating stroke patients that convinced him that this field was his path forward.

“That ultimately propelled me to try and help people that were going through what I had gone through,” he said. 

He understood the process was long, complicated and may not ultimately lead to full recovery, but it would lead to a new life. 

THE NEXT SUMMIT

As with many stroke patients, recovery isn’t a cure. Hultman continues to do occupational therapy on his right arm. He receives Botox injections, which help relax the arm muscles. His speech will progress. Cognitive challenges remain and he sometimes needs to read something a few times to make sure he's fully comprehending the text. 

But the main reason Hultman comes down to the University of Utah several times a year is the man who has become as much of a friend as a doctor.

“If my appointments were moved to a different unit or a different doctor I would probably just stay up here,” Hultman said.  

The two men had been planning to ride LoToJa again together until Edgley collided with a deer while going 45 miles per hour biking at dusk down Emigration Canyon in Salt Lake City in 2016. 

The impact cracked nine of Edgley's ribs, dislocated his shoulder and knocked him unconscious. 

The accident derailed Edgley and Hultman’s plans to ride the 2017 LoToJa relay together. “We were going to ride side by side from the beginning to the end,” Hultman said. Only the attorney took part that year.

Three years later, in the fall of 2020, it was Edgley’s turn to take on the LoToJa relay. And there, at the finishing line, was his friend. 

“It was very meaningful to me that Brian was there to support me,” Edgley says. “It’s a testament to our relationship.”

The men talk of their athletic adventures on the horizon, the races yet to be finished. The summits yet to be climbed—together. 

“I know he would do anything in his power for me and I would do anything in my power for him,” Edgley said. 

FINISHING THE RACE

Written by: Julia Lyon
Edited by: Stephen Dark
Photography by: Charlie Ehlert
Banner image provided by Dr. Steven Edgley
Design by: Luat Nguyen