Written By Susan Donaldson James and Originally Published in ABC News on September 28th, 2011
Scott Bolzan, a former NFL player and successful aviation entrepreneur, arrived early at his Phoenix office three years ago, but a trip to the bathroom changed his life forever. He slipped on wet cleaning oil and landed on the back of his head. By the time paramedics got him to the emergency room, he had lost 46 years of his life.
Inexplicably at first, the head injury triggered retrograde amnesia. The last thing Bolzan remembered was his feet going into the air.
Bolzan had no memory of who he was, or who the worried blond woman sitting beside his hospital bed was. He no longer even knew what the word "wife" meant.
In their new memoir that comes out Oct. 4, “My Life, Deleted” Bolzan, now 49, and Joan, his wife of 26 years, describe the trauma of piecing back together his past and starting over again as husband and wife.
"My well of darkness seemed bottomless," he writes. "Deep down, I knew I wasn't the same person. I feared I never would be normal again."
Gone were memories of his earlier career playing for the Boston Patriots and Cleveland Browns, his job as CEO of the Legendary Jets, the stillborn death of his daughter, Taryn, and the subsequent birth of two other children.
That was in 2008, and today Bolzan has learned how to live with the large gap in his past and to rebuild his life -- economically and emotionally.
The amnesia took an equal toll on their children as the couple dealt simultaneously with their teenage son's addiction to heroin.
"It's been a long struggle," said Bolzan. "I have rebuilt my life through pictures and stories, and from family friends, mostly my wife."
"It would be a great story if it didn't happen to us," said Joan Bolzan, 48. "It's hard watching him struggle without wisdom and experience, the man who is the breadwinner, the alpha male. It's a rough road, but we'll get there."
Retrograde amnesia is the loss of memory of information acquired before injury, according to Margaret O’Connor director of neuropsychology at the Center for Cognitive Neurology at Beth Israel Deaconess Medical Center in Boston, and a professor at Harvard Medical School.
Retrograde amnesia occurs after damage to the medial temporal lobe or encephalitis, and has fascinated doctors for more than a century. In its "purest form," there is dense memory loss, but the patient continues to have intelligence and reasoning, as well as language function, according to O'Connor.
Like Bolzan, amnesiacs can usually understand written and spoken words, and can retain skills such as bike riding or playing a musical instrument, which are part of procedural memory. They may also understand that they have a memory disorder.
Bolzan's case, one of the most severe on record, is likely irreversible, according to the couple. It took four months to diagnose. Bolzan was initially treated for a severe concussion and sent home from the hospital after three days. Doctors said he would likely recover within a week. But the memory loss continued, and one doctor even suggested it was psychological and that he should see a psychiatrist.
Bolzan continued to feel disoriented and nothing in his home looked familiar, including his two teenage children, Grant and Taylor, or even his own parents.
Doctors eventually determined from a brain scan that Blozan had no blood flow going to the right temporal lobe of his brain, where memory is stored.
Oddly, when Bolzan was first hospitalized after the accident, it was football play-off season. He realized he knew some of the rules of the game but had no idea about the divisions or players.
He could not remember how to start the car the first time he drove months later, but knew the meaning of road signs and lights. Like others with retrograde amnesia, he had no difficulty forming new memories.
O'Connor said Bolzan's case is "interesting" from a neurological standpoint, as head injuries rarely cause this kind of amnesia.
"Retrograde amnesia usually takes place in the context of infection, encephalitis or something causing ongoing seizures that disrupt the formation of memory," said O'Connor. But, she said, lack of oxygen "leaves a big footprint on the brain."
Medical experts also say that people with retrograde amnesia cannot recover their memory simply by being told the events of their life by others.
Unsurprisingly, retrograde amnesia can take quite a toll on a marriage, and not all couples are as successful as the Bolzans at continuing their union, said O'Connor.
"A lot of families fall apart," she said. "The strength of the marriage is tested, where there is too much stress and heartache.
"But If someone has an intact relationship with his wife and a strong marriage, it usually survives," she said. "You can imagine the emotional ramifications of having a spouse not remember the critical points of a relationship."
Scott and Joan Bolzan had been college sweethearts at Northern Illinois University. Their first child, daughter Taryn, suffocated coming down the birth canal.
"How could I have a child that we lost and not have an emotional attachment to that?" Bolzan asked himself.
Much of his recuperation involved watching television shows like "Dr. Drew" and "The Sopranos," shows that his wife told him he had enjoyed before his injury. "I was such a bad insomniac. I would see shows on TV and find out how husbands and wives talked to each other, said Bolzan.
He also watched how his wife and daughter interacted to learn how to become a good husband and father again.
About 18 months after the accident, Bolzan developed a seizure disorder that was a maladaptive coping mechanism caused not by electrical signals but psychological stressors, according to his doctors. He continues to get therapy.
"I still have anxiety meeting someone for the first time, even if I have known them for 10 years," he said. "I don't recognize them, and I don't know what that relationship was, especially if I am in a group setting conversation and I have no idea what they are talking about."
Today Bolzan's past is still a blank slate, and he continues to suffer from seizures and headaches. With Bolzan unable to work, the couple, who once made a large income, has struggled to pay their medical bills.
They settled a lawsuit against the office building where Bolzan fell in 2010, and now earn money from giving "inspirational" speaking tours around the country.
Their daughter, Taylor, now 20, is back in Phoenix working, but their older son has had "countless" drug relapses, according to his father. "Grant is still fighting his demons," Bolzan said.
Bolzan admitted it was not easy renewing his love for his wife, a woman he no longer recognized.
"Probably the best way to describe our relationship was it was built on trust," he said. "From the minute she came into the hospital, I had to learn to trust her to take me to this place called home. ... I believed every word she told me, and the trust really started building into love."
In a touching scene from the book, the couple spends a night on their boat and reinitiates their sex life. "He has retained a lot of procedural knowledge and thank goodness for that," his wife laughed. "We definitely have become so close and almost inseparable."
Bolzan said the first day he realized he loved her was four months after the accident, when Joan went to work for the first time.
"I was home all alone and sick to my stomach," he said. "I didn't know how to carry on without her at my side. I stood by the back door like our two dogs, waiting for her to come home."
Joan Bolzan said her husband has retained "deep" personality traits that were engrained in him, despite the memory loss -- "love, loyalty, protection and courage, all those things are there."
She also said that he is more compassionate. "He lets a little more in, and it affects his heart," she said.
The couple holds out hope that new therapies could awaken his memory. "But I have lived the past three years with the assumption that they are not coming back," he said. "If they don't, I will keep going with what I have and hold on to that."
And though writing the book was hard, dredging up the "dark days" of his recovery, the Bolzans have pledged to donate some of the proceeds to the Brain Injury Association of Arizona and the Phoenix Children's Hospital Neuro-NICU Department.
"The cartharsis may come later as the wounds heal, when we see the way it touches people's lives," said Joan Bolzan. "The accomplishment was huge for him doing the book. He finished something and is proud of it.
"The process was difficult and in the end, he sat there and sobbed," she said. "So much of our lives was put into it."