CTE hitting close to home
Daughter of former Packers player and coach forges documentary
By Jeff Ash
Lew Carpenter was brought to Green Bay in 1959, Vince Lombardi’s first season, because the Green Bay Packers’ new coach needed a man who could show his teammates how to win.
The savvy, versatile running back and return man had played in three NFL championship games in five seasons with the Detroit Lions and Cleveland Browns before arriving in Green Bay. Then he played in three more with the Packers, retiring after the 1963 season.
As a trusted offensive coach for the Packers in the late 1970s and early 1980s, Carpenter helped James Lofton become a Hall of Fame receiver.
Rebecca Carpenter, a California artist, teacher and filmmaker who grew up in Green Bay, remembers her father as “my hero.”
In the same breath, she also remembers “there was a time I was very angry with him.”
That’s why she’s made “Requiem for a Running Back,” a documentary film about her father’s life, her father’s death and its ripple effect across the tightly-knit pro football alumni community.
Lew Carpenter was 78 when he died in Texas in November, 2010. The preliminary cause of death was pulmonary fibrosis, a lung disease. Then researchers at Boston University asked the family for Carpenter’s brain. What they found stunned his widow, Ann, and their four daughters.
Carpenter had chronic traumatic encephalopathy, or CTE, a progressive, degenerative brain disease found in people with a history of repetitive brain trauma. It was Stage 4 CTE, the most severe kind.
Carpenter played football for almost 20 years, first on a six-man football team at West Memphis High School in Arkansas in the late 1940s, then at the University of Arkansas in the early 1950s, then in the NFL for 10 years.
Yet as far as the family knew, he’d never been diagnosed with a concussion.
“CTE was a disease we had never heard of, nor did I believe, in the beginning, that it was real — a real disease. I was quite convinced that the Carpenter family’s goodwill had been abused,” Rebecca Carpenter says. “I was enraged and feeling very violated.”
A friend spent time listening to Carpenter and urged her to channel her emotions into a film. That friend, Sara Dee, a University of Wisconsin alumna, wound up producing the documentary.
“I think the family was just so shocked by that that it sort of threw them, and Rebecca, into a bit of a re-examining their father’s life and the cost-benefit analysis of football and rethinking things, different events, that had taken place,” Dee told the Detroit Free Press earlier this year.
Carpenter went to work, directing the film.
“I had $20,000 in savings and decided to use it to fund the first leg of the road trip to discover what was true (about CTE) and what was being inflamed and why,” she says. Carpenter later sold her house to help finance a project that eventually cost more than $400,000.
Requiem for a Running Back debuted to rave reviews at the Freep Film Festival in Detroit last April. To watch the trailer and learn more about the film, go to requiemforarunningback.com.
“It has had a fantastic reception,” particularly among retired pro football players and their families, Carpenter says. “But it’s really a film about one family trying to make sense of brain injury.”
That has taken time.
“My father could be normal,” Rebecca Carpenter says in the film’s trailer, “but he could also be explosive. Childlike resistance. Behaviors which grew more pronounced over the years.”
While growing up in Green Bay, Carpenter says, “we hid a lot of things that were happening which could be very isolating. We never wanted to say or do anything that would make Dad or the Packers get bad press, so that made it very difficult to ask for help.”
Lombardi’s biographer, David Maraniss, writing about the film in the New York Review of Books earlier this year, described Lew Carpenter this way: “At home, his anger and withdrawal had cast a shadow over (Rebecca’s) childhood and later became so pronounced that his wife, after a long and loving marriage, felt no choice but to leave him.”
That is life with a man with an undiagnosed brain disease.
After Lew Carpenter retired from coaching in 1996, he started showing symptoms of dementia, one of the end stages of CTE. Trouble expressing himself. Forgetting things. Flashes of anger.
“We were very lucky that Dad’s more troubling behaviors weren’t much, much worse. He did have some odd behaviors that never made coherent sense,” Rebecca Carpenter says. “But in the end, it really made sense that his brain was impaired in some ways that could make regulating his feelings very difficult for him sometimes. He did have CTE. CTE is real.”
Carpenter hopes those who see the film will learn what she did. “Love is everything,” she says.
“I am learning to shift my lens from a disability model, feeling frustrated and angry about what my dad didn’t or couldn’t do, to an ability model, marveling at how functional he was and how hard he fought to be connected to me and my sisters and my mother despite having very extensive brain damage,” Carpenter says.
She also hopes those who see the film also will see that brain injury can be devastating for families.
“Talk about what’s going on in your life with safe people who won’t judge you. Isolation is the worst thing you can do if you have a brain injury or you are living with somebody who has a brain injury,” Carpenter says.
An online fundraiser earlier this year brought in almost $11,000 to support “Requiem for a Running Back,” for which Carpenter seeks an underwriting partner to help take the film on the road to host screenings and discussion panels to draw attention to brain injuries. She also hopes the film eventually will air on television and be available via streaming and DVD.
“I’m hoping it will be thought of first and foremost as a good story, well told,” Carpenter says.
But also a story, she says, that “places sport-related brain injury within the context of brain injury in general, drawing attention and energy to a little recognized and little understood degenerative challenge afflicting countless families, whether veterans, football players, car crash survivors, battered women and so many others.”
Lew Carpenter’s legacy? He’s still a champion, especially among pro football alumni and their families. His CTE diagnosis was among the first for long-ago NFL players. It widened the scope of research beyond younger and middle-aged former players.
“CTE is real,” Rebecca Carpenter says. “Until we man up and acknowledge it, lives will be destroyed. Once we admit it’s happening, we can rally our resources around helping these men, their partners and their children.”
Without naming names, Carpenter sends a clear message.
“The denial of its existence,” she says, “needs to stop.”
Growing up in a Packers family? Life ‘in a fish bowl’
We asked Rebecca Carpenter what it was like growing up on Green Bay’s west side as one of the four daughters of a Packers player and coach.
“Oh boy! I could write a novel! Exhilarating, frustrating, special.
“The standards we were held to by the community felt extraordinarily high and impossible to live up to. We were supposed to be as special and accessible as he was. And yet, we had never played pro ball.
“Shaping your identity in a fish bowl with very high standards – especially as a woman – was both difficult and privileged. I have no regrets. I’ve led an interesting, complicated life and it has taken me a long, long time to understand how extraordinary professional football players are in many, many ways. They set the bar for my ‘normal’ and my appetite for risk was much higher as a result. I’m grateful. But it wasn’t easy.”
After growing up in Green Bay, Carpenter earned a bachelor’s degree in Germanic studies at Harvard University, then a master’s in fine arts from the University of Texas and a master’s in teaching from the University of Southern California.