Robbed of memory

He has crossed Southwest 14th Street on the Oregon State University campus in Corvallis, but where to go from here?

Cross Southwest Jefferson Way and head south, or veer to the northeast up 14th?

He makes the latter choice.

“Ben, where are you going?” says his mother, Renee Irvin. “You’ll want to cross here,” she says, gesturing to the south, toward the courtyard by the McNary Dining Center, where prospective freshman are participating in orientation on this mid-July day.

Mother and son have practiced these “wayfinding” exercises on the OSU campus several times this summer, so you would think an 18-year-old would have it down by now.

For Ben Cooper, though, a 2011 South Eugene High School graduate who plans to major in mechanical engineering at OSU, directions and intersections are a challenge these days.

His life, after all, came to a major intersection on Dec. 11, when, just 17, he sustained a severe right-brain hemorrhage that led to an almost fatal stroke.

“I woke up with a headache and tried to choke down some aspirin,” Ben says of that Saturday morning. He does not remember it. It’s just what his parents have told him.

His mother had left minutes earlier to run a local road race. Ben was going to go along and shoot some photos for a senior project, but he didn’t feel well.

His father, Jay Cooper, was more than a little concerned. Ben never had headaches. And now he was vomiting. Now he was on the couch. Now he was losing consciousness.

Then he collapsed.

Jay Cooper, a library assistant at the Eugene Public Library who spent 20 years as a respiratory therapist, was terrified. He called 911.

“Shower with (rehab nurse) Crystal. Told stories about IOP (South Eugene’s Integrated Outdoor Program). I don’t remember much else.”

— From Ben’s journal, Jan. 22

For all the tragedies that befell the South Eugene High School class of 2011 — the mysterious New York City subway death of Sean Taggart-Murphy after his freshman year, the suicide of Sydney Bonzer during her sophomore year, the Feb. 5 drownings of seniors Connor Ausland and Jack Harnsongkram, a fellow IOP classmate of Ben’s — this is perhaps the one you didn’t hear about.

This is the tragedy that almost was — if not for a fast-acting father and a multitalented young brain surgeon who has been in Eugene for only 17 months.

What are the odds, though, that a seemingly healthy 17-year-old would have a stroke?

According to the American Stroke Association, the chances that someone 19 or younger will have a stroke are about 4.6 in 100,000. That’s about one in every 21,739.

Ben, though, not only falls into a rare category of young people who are stroke victims, but an even rarer category of those whose strokes were the result of a ruptured anteriovenous malformation, AVM in medical parlance, an abnormal clump of blood vessels in the brain.

According to the American Stroke Association, one in every 200 to 500 people might have AVMs.

But only 2 percent to 4 percent of people found to have AVMs ever experience a hemorrhage, and of those who do, only about 25 percent bleed as badly as Ben’s did and require life-saving surgery or other treatment, according to Dr. Erik Hauck.

Hauck is a native German and an endovascular neurosurgeon at Sacred Heart Medical Center at RiverBend. He arrived in Eugene in March 2010 from Buffalo, N.Y. And he is the only neurosurgeon between Portland and San Francisco with the expertise to perform both modern, high-tech diagnostic catheter procedures and open brain surgery on AVMs.

AVMs are usually always congenital, meaning the patient is born with the malformation but would never know it unless there’s a traumatic episode or a doctor happens to spot it on a CT scan or MRI, Hauck says.

Hauck, 37, spent about six hours surgically removing Ben’s AVM on Dec. 14. Ben was in the intensive-care unit for three weeks, two of them spent in a coma. He spent 32 days of his senior year at the hospital and then transferred in mid-January to the Oregon Rehabilitation Center at Sacred Heart’s University District hospital in Eugene for five weeks of physical, occupational and speech therapy.

“It’s a wonder that he’s alive,” says Dr. Paul Coelho, a physiatrist with Rehabilitation Medicine Associates in Eugene who has overseen Ben’s rehab. “His dad basically rescued him,” Coelho says of Jay Cooper’s quick thinking and immediate call to 911 that had paramedics there within seven minutes.

Ben’s medical bills have topped $800,000, but almost every penny has been covered under Jay Cooper’s PacificSource health insurance as a city of Eugene employee.

But Ben continues to struggle with the lingering damage caused by his near-calamity.

An only child, a rail-thin, shy but quick-witted young man with shaggy brown hair and big brown eyes that rest behind wire-rim glasses, he has found the past six months to be by far the strangest of his young life. In a moment of reflection, he mentions how “bizarre it is not to trust your own brain. And to have faulty memory is really a handicap. Without a past, you have no future.”

Did he run the July 4 Butte-to-Butte road race last month? He thinks so. He’s pretty sure. Maybe. (His mother says he did).

Does he remember what he had for breakfast this morning? Sure. Honey Bunches of Oats. He writes it in his journal every day to remember.

“Absolutely bizarre,” Ben says of the faulty short-term memory caused by the damage to his brain. “The feeling of not trusting my brain is just really … disconcerting. I was really healthy before this. I never had any medical problems, so it’s just a sort of bizarre wake up call that someone like me, who was healthy and smart and active, was floored by this.”

What Ben has now is known as anterograde amnesia, the partial or complete inability to form new memories. Although he still has his long-term memory, his childhood memories and the like, remembering what happened yesterday is tricky.

“What happened to me Dec. 11th. Woke up with a headache about to go photograph a race. Threw up repeatedly passed out in living room.”

— From Ben’s journal, Jan. 30, after his mother said to write it down after he kept asking what happened to him.

There is a piece of paper taped to the inside of the front door at the Cooper-Irvin home. Written by Ben’s father, it says:

Stop!

Do you have …

Phone?

Money?

Keys?

Bus pass?

Wallet?

“I was always kind of forgetful,” Ben says. “But now, after the stroke, I’m really forgetful.”

Damage to the right hemisphere of his brain, which controls the body’s left side, resulted in initial partial paralysis on that side. He had to relearn how to walk and use his left hand. The damage also caused something known as “left-side deficit” in his vision. When a tray of food was placed in front of him in the hospital, he only ate what was on the right side. When he buttered a piece of toast, he only buttered the right side.

In addition to the short-term memory problems, Ben also has trouble with his visual memory. The hemorrhage bled so badly that his whole brain was affected, Hauck says. Damage to the parietal lobe, the part of the brain that integrates spatial sense and navigation, is the likely explanation for Ben’s trouble with directions, Hauck says.

Ben puts it this way: “It’s like someone took all the books out of a library and just jumbled them all up on the floor. They’re all still there pretty much, it’s just the retrieval system doesn’t know where to look for them.”

His memory has improved greatly, though, since he began rehab in January. And he’s back to daily hikes with his mom on the Ridgeline Trail south of town and has walked or run more than a half dozen 5-kilometer races since getting out of daily rehab, even if he cannot remember them.

Hauck and Coelho say long-term prognosis for memory recovery in stroke victims is difficult to predict, and full recovery may never come.

“Read text messages while on bed. Walked 1 lap with small detour at (Spencer Butte Middle School) track = 7:02. Seoul chicken for dinner — yum. Went home! Take a shower and walk around track. Two South kids died at the coast. I didn’t know either of them. School won’t be the same without them.” — From Ben’s journal, Feb. 5

Since Ben’s stroke occurred just before winter break, and before fall semester classes had wrapped up, he was unable to complete those classes. In order to graduate, he had to make some of them up.

But how do you study when you can’t remember what you just read, and you can’t type on a keyboard because your left hand is hardly functional? When your memory is so poor that your parents have to keep breaking the news to you that the family’s beloved cat, Soxie, had to be put to sleep when you were in the ICU? When you keep asking your father, “I’m a senior?”

You write things down in your journal. You go to rehab. You ask for help.

In order to have enough credits to graduate, Ben worked with two Eugene School District in-home tutors, Pat Albright and Richard Bell, between February and June. He worked with Bell on algebra II, which he was unable to complete in the fall. And Albright created four classes for Ben in the subjects of art, writing, health and keyboarding.

The only class Ben attended at South Eugene after his stroke was IOP, the yearlong Integrated Outdoor Program that is a two-period block class of English and P.E. It involves reading classic literature and pursing outdoor activities, from rugby to swimming in ice-cold rivers to navigating through a dark desert.

Challenging adventures, for sure.

But then, for Ben, so was simply finding the classroom his first day back after spring break. He couldn’t. Frustrated, he walked home — four miles. Or maybe more, depending on what route his damaged brain led him.

Another time, he failed to meet the other IOP students — many of whom went to see him, on visits organized by Harnsongkram in the weeks before Harnsongkram’s Feb. 5 drowning on the Oregon Coast, when he was in rehab at Sacred Heart — for one of their out-of-class excursions. They had to leave without him. Another time, despite being assigned a student leader to watch out for him, Ben got lost on his bicycle when the class rode bicycles to Autzen Stadium and back.

“It was really scary for me,” recalls IOP teacher Pete Hoffmeister. “It was scary for his mom and dad.” Hoffmeister says he discussed the issue with an assistant principal who wondered if Ben should be dropped from the class for liability reasons. But Ben was determined to finish the class, and Hoffmeister was determined to help him.

“At that point, I felt quality of life was the important issue,” Hoffmeister says. So they worked on it. They kept a better eye on him. And Hoffmeister was in constant contact with Irvin, who admits she might have driven him, and others, a little batty over the situation.

“I feel like … I’m the parent of an autistic child,” says Irvin, an associate professor of planning, public policy and management at the University of Oregon, as well as the associate dean of finance in the School of Architecture and Allied Arts. “I feel if I don’t do the right thing, at the right moment, this child won’t grow up to be a productive member of society.”

“Discharged. Feeling a bit queasy. I think this has been going on for a long time but sense of time is messed up too.”

— From Ben’s journal, Feb. 17

Ben graduated from South Eugene, on June 11, exactly six months after his stroke. He strode across the stage at the Hult Center for the Performing Arts in his purple robe, along with his 354 fellow classmates.

Bell, the in-home math tutor who has worked with students recovering from everything from leukemia to concussions and brain injuries, said he’s often amazed at the ability of young people to spring back. “Sometimes it’s pretty inspiring to see.”

Ben and his parents thought about waiting a year for him to attend college, but figured that might only delay his recovery. He is registered for college algebra, mechanical engineering 101, jogging and German — one of his favorite subjects in high school — for fall term at OSU.

He is excited to leave home for the first time, despite the challenges he now faces and despite the fact that when he comes home for visits his parents will be living in different homes, having recently decided to separate because of issues that predate Ben’s stroke, Irvin says.

Ben is struggling with that separation.

“Part of me felt like it was the anvil that broke the camel’s back,” Ben says, walking along Willamette Street in downtown Eugene. “Just so much crap has been happening to me lately. So part of me was sort of distraught that it had to happen now. But part of me is pretty OK with it. I want what’s best for them. I guess I’m just a tad annoyed at them for doing it now.”

Irvin says she and her husband remain a “good team” for Ben, and despite the stress of the past eight months, knowing what other South Eugene parents and families have been through, are grateful for the help they have received from family and friends, from colleagues and school district staff and the countless medical personnel who have been involved in Ben’s continuing recovery.

“It gives me a different perspective on disabled people,” says Jay Cooper, who says he has more empathy for parents who come into the Eugene Public Library’s children’s section, where he works, with kids who are autistic or face other challenges. “I’d like to think I was always as helpful as I could be,” he says. “It’s now just kind of personal for me.”