A troubled former USC football player died at the age of 31. His family hoped that studying his brain for CTE would help others

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The brain arrives at all hours in white cardboard boxes with the stamp "RUSH!" Each package contains a 2.5 cm thick foam liner and a red bag that protects an ordinary white plastic bucket.

When a courier service delivered Kevin Ellison's brain to the Bedford VA Medical Center near Boston just after 2 p.m. on January 22, Dr. Victor Alvarez the routine he has done so many times that he stops counting.

The neuropathologist unpacked the box, weighed the brain and examined it for bruises or bleeding. He took dozens of photos with different exposures to capture differences in shape and color that were not visible to the naked eye.

Alvarez processes most of the brains that have been donated to the partnership between the Department of Veterans Affairs, Boston University CTE Center and the Concussion Legacy Foundation. He moves with care and speed, knowing that every brain represents a family looking for answers.

The Ellison family donated his brain to be examined for CTE, or chronic traumatic encephalopathy, the devastating neurodegenerative disease found in people who have repeatedly suffered head injury, but can only be diagnosed after death. Soccer players are the most prominent victims.

It was three months since Ellison died at the age of 31 – and almost a decade since his days on the football field as a tough defensive back, team captain and favorite at USC. He played a season for the San Diego Chargers. The three words tattooed on his left arm summarize his approach to life: "Be the best."

Ellison lived in an apartment behind his mother's house in Inglewood. He had a degree in economics at the university, but at the end he no longer drove and struggled to keep jobs. He had a headache that never really went away. His neck ached and he felt dizzy. He could not sleep, heard voices, spoke to the sky.

Sometimes old Kevin returned, his mother remembered. But she could see when darkness was approaching. His grin faded. His eyes wandered. He took long showers to escape, the sound drifted into the living room.

The last trip of K-0623, as the Ellison brain was known to researchers, went through laboratories and tight offices in Boston. The search for answers to Ellison & # 39; s unraveling took almost a year. Has football, which had given him joy and fame, contributed to his decline? His family would spend that time waiting for an answer.

During his memorial service, the program contained a letter that his mother, Judy Reisner, wrote to her son: & All my memories only reinforce how deep the relationship between mother and child is. So deep that in recent years I could not only see the pain in your eyes, but also feel it. It hurt my bones that I couldn't remove it. "

Judy Reisner at home with photos & # 39; s of son Kevin Ellison a few days before the anniversary of his death.

(Robert Gauthier / Los Angeles Times)

The family followed Ellison's decline until mid-2012. After his NFL career faltered, he joined an Arena Football League team in Washington State. He had started drinking, something he avoided at USC, and was taking prescribed painkillers. In his first game for the Spokane Shock in May 2012, he scored a touchdown.

Five weeks later, Ellison lit the bed in his apartment at the Big Trout Lodge with a cigar filled with marijuana. He jumped out of a third floor window and later told the authorities that God ordered him to start the fire and prevent anyone from getting hurt.

Ellison was eventually transferred from prison to a psychiatric institution and was diagnosed with bipolar disorder and schizophrenia.

"He would reset. He would falter. He would be hospitalized, & # 39; said his sister Camille Ellison during his memorial. & # 39; He would feel better. He would start a new job. He should He couldn't work long hours or drive a car because it required a decent concentration and his brain couldn't handle it, but still, oh, how his mind wanted it. & # 39;

On October 2, 2018, the Ellison family tried to persuade them to go to a hospital for 72-hour psychiatric care. He had not used his psychiatric medication for weeks. The voices and paranoia returned.

Ellison ran down the street from his mother's house, told a neighbor that someone was trying to kill him, and disappeared. The family has reported missing persons, called hospitals and police services. Two days later, Camille Ellison published on Facebook: "If you happen to see my youngest brother, Kevin, (probably walking), you can send me an SMS."

An hour before midnight, a man wandered the northern lanes of the 5 Freeway in the San Fernando Valley. He waved his arms at passing vehicles. Minutes after a driver named 911, a Chevrolet Astro minibus hit the man. Paramedics declared him dead at 11:36 am. He was wearing a bus pass and wearing a USC sweater.

The Los Angeles County medical investigator coroner identified Ellison with fingerprints.

Three days after death, his eldest brother, Chris, received an unusual e-mail.

Kevin Ellison

Kevin Ellison, during his days at USC, hits a hit on Arizona receiver Syndric Steptoe.

(Wally Skalij / Los Angeles Times)

"I'm terribly sorry to hear about your loss, and I'm very sorry to contact you today," wrote Chris Nowinski, co-founder of the Boston-based Concussion Legacy Foundation. "I am sending an email on behalf of the Boston University CTE Center and we would like to try to help your family … If your family wanted us to study Kevin's brain, we might be able to give you a diagnosis that helps you understand better what happened. "

Chris Ellison replied a few minutes later: "I am sure this is something we would like to do."

Nowinski, who played football at Harvard and struggled professionally, has made such requests for more than ten years. The first came after former Philadelphia Eagles defensively Andre Waters committed suicide in 2006.

Nowinski wrote a script for what to say and then worried, sweaty, procrastination. He eventually called and asked the family for permission to study the remains of Waters for CTE. They agreed. Although Waters died at the age of 44, the study showed that his brain had the characteristics of someone twice her age.

Nowinski doesn't have to send many emails nowadays. Word has spread. Families who want to donate brains of deceased loved ones call 24 hours a day by a research assistant with a black flip phone. They have a few minutes to evaluate whether the brain is suitable for study. There are more donated brains – from athletes, military veterans and others – than time to examine them.

Two hours after the e-mail, Ellison's mother signed the consent form. The three Reisner boys all had concussions. Keith, the middle brother, spent five seasons as a linebacker with the Buffalo Bills. Chris, who played defense for Brigham Young, works as an agent for various NFL players and is hopeful.

Kevin, the youngest, had told his sister that he had eight concussions. He had built a reputation for fierce hits on the football field. Shortly after his death, the USC athletics department tweeted a 14-second video from Ellison who hurled his body to the California DeSean Jackson receiver in 2006. Their helmets hit each other. The announcer crowed about how Ellison Jackson almost "beheaded".

"The late, great Kevin Ellison," said the tweet.

At the commemoration, the Ellison family distributed bracelets with the date of his birth and death, as well as his nickname – Kells. Near flower arrangements with & # 39; Be the best & # 39; and & # 39; Beloved by everyone & # 39; written on ribbons, Camille Ellison described her brother's journey through the fog of mental illness.

"This beautiful person," she said. "Still smart, still competitive, handsome and a leader, stuck in a cycle in which his brain always let him down – even when he got back on his feet and good things started to happen to him again."

Ellison & # 39; s brain stayed with the office of medical researcher-coroner in L.A., stored in a white plastic container filled with formalin – a sharp mixture of formaldehyde and water – for the trip to Boston.

Kevin Ellison memorial program

The brains examined by Alvarez and other neuropathologists are processed at the Bedford facility or the Jamaica Plain VA Medical Center in Boston. In Jamaica Plain is a refrigerator with glass doors filled with white buckets with brains, each container labeled with a case number. Industrial freezers filled with frozen halves occupy adjacent rooms.

About ten years ago, Alvarez drove through a snowstorm to surgically remove the brains of a former college football player who had agreed to donate his brain for study. The storm prevented the building from getting any more power, so Alvarez fed an extension cord to a generator in a neighboring company. He brought the brain back to the lab and processed it immediately.

Brains fixed in formalin have a rubbery texture; fresh brains come wrapped in ice and feel like ripe brie. The fresh brains are cut in half. A portion is stored in a minus-80 degrees freezer for later genetic and molecular studies. The other is placed in a preservative for a few weeks to harden and stop the decay.

About an hour after Ellison's brain arrived, Chris Ellison received an email from one of the research assistants, Laney Evers.

"We understand that you may be afraid of the results, so keep in mind that we will do our best to … work as efficiently as possible," Evers wrote.

Given the number of brains being studied, seven months passed before Alvarez Ellison & # 39; s brain dissected on July 24, the same day that most NFL players signed up for a training camp.

The brain is divided into sections with a tool that looks like a bread knife, but with a non-bordered edge. Alvarez is known to colleagues for precise cuts, with a trained and methodical technique. With his left hand he gently presses on the top of the brain while his right hand slides the knife horizontally to the bottom. The goal is coronal slices about a third of an inch thick.

Each cut reveals a new piece of the puzzle. Has the frontal lobe shrunk? Have the ventricles been enlarged? Alvarez places each on a black sheet and photographs it.

Tissue from up to 40 areas of the brain is embedded in cassettes, inch-wide plastic hinged sleeves. The cassettes undergo chemical processing for a day and then paraffin wax is added to improve the structural integrity of the fabric.

A holistic eye cuts off pieces one tenth of the thickness of a human hair. The sections are placed on 80 to 100 glass slides, each colored by hand.

Brain is being tested for CTE

The preserved brain of a football player suspected of suffering from CTE is cut into slices in the VA brain laboratory. It is an early step to determine whether the man was suffering from CTE.

(Josh Reynolds / For The Times)

At the end of August, Kevin Ellison's slides traveled to the 12th floor of the Jamaica Plain facility, through a white cinder block and the cramped office of Dr. Ann McKee, where a wilted plant stands next to a large microscope. McKee is head of neuropathology for the VA Boston Healthcare System and director of the Boston University CTE Center.

Stacks of drawers filled with 20 slides surround her desk and any other available surface. Two football helmets and a foam cheese, from her time as the root for the Green Bay Packers, recall the tension between her groundbreaking CTE research in the past decade and America's most popular sport.

"I used to love football," McKee said.

She would fight against nerves and have sleepless nights for every Packers game. CTE has changed everything.

"None of these people expected to risk their brain health," McKee said. “This was not in their plan. You know, it's not people who said, "Yes, I want to play football so badly that I don't care if I can't think straight." That was never part of the decision. "

She considers the slides as chapters in a book, each offering a different clue to the person and what they have experienced. Although she has access to the name and age for each case, she doesn't have any extra details to focus on the story the slides tell.

A study published last year found CTE in the brains of 133 of 136 former professional football players, although the sample was drawn from donations – and families are more likely to donate the brains of loved ones who have had difficulties in life.

Her routine is the same for every set of slides. McKee starts with the sense of smell, responsible for the sense of smell, which refers to what she will find elsewhere. Dark tangles of tau protein – the toxic characteristic of CTE – are often visible.

She then investigates the substantia nigra, which helps control muscle movement, and the superior frontal cortex, an important area for executive function and emotions.

Each clue brings McKee closer to a different answer for another grieving family.

"I have the feeling that I should be part of consciousness and advocacy, because who else will do it?" McKee said. “Who will carry this torch? Who will make the difference for these families if they don't have a spokesperson? "

Four days after examining Ellison's brain, his brother Keith stood on the sidelines to coordinate defense while the Redondo Union High School football team was scrambling against Arcadia High. His brother Chris coached the defensive backs.

"Who carries this torch? Who will make the difference for these families if they don't have a spokesperson. & # 39;

Dr. Ann McKee

While neuropathologists peered into Ellison's brain, clinical investigators dived into his life. On September 17, research assistant Madeline Uretsky called the family with a series of questions.

Uretsky, who suffered a major concussion eight years ago while playing high school football, shares an office with other research assistants at Boston University CTE Center. Miniature football helmets representing the 32 NFL teams are attached to the wall, alongside a framed photo of New England Patriots quarterback Tom Brady.

The researchers collect information using around 400 data points to build a story about a person's life. The Ellison family had completed the first electronic surveys in March and September, but now had to answer even more questions:

What is the psychiatric and neurological history of the subject? Where did they work? Can they remember the day of the week? Have they placed objects wrong? Struggling with substance abuse? Have a headache?

Kevin Ellison as a child

Kevin Ellison, right, and his brother Keith around 1996.

(Ellison family)

Uretsky would hear at the age of 8 how Ellison tackle football played with the Inglewood Jets. How delicious he was to eat, and as a child he was caught in a cupboard that systematically devoured a miracle bread. She learned how he graduated from high school a semester early to play for USC and about his return from three knee surgeries. She also heard about the time he bought 100 Vicodin pills on the street after his rookie season in the NFL to hide a knee injury from the Chargers.

And she would hear about the series 72 hours of psychiatric care, the times he stopped taking medication because it made him listless and arrived, and the attempts to get self-medication with marijuana and alcohol.

Twice a month the Boston researchers hold a & # 39; consensus meeting & # 39; to discuss their findings and they recorded Ellison on September 24. Each case starts with a research assistant who summarizes the family interview and other information collected on a topic. The clinicians, including neurologists, neuropsychologists and psychiatrists, discuss the topic. The neuropathologist is the last to illustrate the presentation with slides of brain tissue.

Although the clinicians know the identity of the subject while the research is being performed, the name will be remembered at that time by the staff who process and examine the brain to prevent unconscious prejudices. The name comes out at the consensus meeting. When McKee does not present, she will sometimes google the person being discussed while the meeting continues. She cannot contain her curiosity.

The day after the meeting in the brain of Kevin Ellison, Judy Reisner called a conference call with McKee. Camille Ellison did the same. The doctor thanked them for the donation and brought the news quickly: Kevin had CTE.

Ellison CTE report

The frontal lobe of his brain was atrophy and the lateral ventricles were enlarged. The changes are usually only shown when someone is 50, 60 or even 70 years old.

Slides from the superior frontal cortex and inferior parietal region, 40 times enlarged, revealed scores of brown spots – significant CTE lesions. Other slides showed the same.

The interplay between CTE and Ellison & # 39; s psychological problems was not clear. CTE can be considered for bipolar disorder and schizophrenia – Ellison has experienced both – or can be found with both conditions at the same time. McKee found & # 39; mild neurofibrillary degeneration & # 39; of the locus coeruleus, which is involved in the body's response to stress.

The news was not surprising to Reisner. She felt that her son had CTE. She still cries every day. Now she is worried about young people playing football.

"Football has an allure, people like to watch it, people think these guys are demigods and they make a lot of money," Reisner said. "But they must be aware of what can happen to them."

The day after the phone call, back in the Inglewood living room full of Ellison's photos – grinning at the USC sideline, graduating with his cousins ​​- Reisner watched the Philadelphia Eagles playing the Packers on her large screen television. Camille Ellison just came in. She saw Avonte Maddox, an Eagles player, enter the battle after having been hit in the head. It made her sick.

"After I have experienced what those invisible injuries, those head injuries, those brain injuries affecting a person, it's hard, it's hard," she said. "It makes me think," OK, now that we know how can we do better? "We know that CTE exists, it has a devastating impact on people and it had a devastating impact on my brother. … The game is safer, but still not safe."

Kevin Ellison high school graduation

Kevin & # 39; s high school graduation in 2005. From left: Keith Ellison, Kevin Ellison, Camille Ellison, Chris Ellison, mother Judy Reisner and father Charles Ellison.

(Ellison family photo)

The diagnosis has not changed Chris Ellison & # 39; s view of football. He suffered various concussions during his playing career and he also has CTE figures.

"Hopefully it can help someone else in the future," Chris Ellison said about his brother's brain research. "Kevin had a mental illness. And the CTE may have improved how he could handle the mental illness, but I don't necessarily agree with that direct correlation. "

Five days after the conference call, Chris Ellison visited Pittsburgh to see a customer play while the Steelers were facing the Cincinnati Bengals. It had been a difficult piece. The birthday of his brother's death on October 4 was approaching.

Chris wanted to control his emotions, but as he drove through Pittsburgh, memories came back. He couldn't stop the tears.

"He's my little brother," Chris said.

That week seven more brains arrived in Boston to study for CTE.

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