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When The Grim Prognosis Is Wrong: A Brain Injury With A Happy Ending

Jason Crigler, 7 months after his brain hemorrhage, and in 2008, with his wife, Monica and daughter, Ellie (Life. Support. Music.)
Jason Crigler, 7 months after his brain hemorrhage, and in 2008, with his wife, Monica and daughter, Ellie (Life. Support. Music.)

Doctors don't always know best.

Just ask Jason Crigler, musician, father and survivor of a massive brain hemorrhage from which doctors said recovery would be unlikely.

In August 2004, Crigler, a much-sought-after New York City guitarist with a two-months pregnant wife, was playing onstage at a Manhattan nightclub when, suddenly, he had a brain hemorrhage. He threw off his guitar and jumped down from the stage. He was rushed by ambulance to St. Vincent's Hospital where his family was told the bleeding was severe.

A neurosurgeon offered this grim prognosis: even if Jason lived though the night (and the chances of that were slim) he'd likely have little brain function left and the old, pre-injury Jason would probably never return. (The cause of the hemorrhage, the family would later learn, was an arteriovenous malformation, or AVM — an abnormal collection of blood vessels in his brain that burst.) "The doctor said he wouldn't be the Jason we knew and loved," Jason's sister, Marjorie said this week, speaking to an auditorium full of brain science students and faculty at MIT. "Most of his doctors didn't think this recovery was possible."

At the time, Jason was 34 years old.

But Jason, a Manhattan kid who picked up the guitar at 16, proved the doctors wrong. Today, he's back playing music, taking his daughter to school and speaking publicly about his medical odyssey. He credits three essential forces with pulling him back to life: his music, fatherhood and his family's unyielding, persistent faith in his recovery. (I would also add a fourth factor: extremely good luck when it came to health insurance and the ability to move to Massachusetts for care. As one of Jason's doctors put it: "If you're going to have a brain injury, this is the state to do it in.")

Indeed, from the very beginning, Crigler's wife, parents, in-laws and sister (who kept a journal of the saga) refused to accept the bleak portrait doctors painted. Though at the beginning things did seem bad. "It is so disturbing to see my brother curled in a human knot," Marjorie wrote shortly after his injury.

There were a barrage of medical complications both major and minor — infections, meningitis, seizures, recurring urinary tract problems, his skin flaking off in patches due to the long hospitalizations. For some time he lay in a coma (a tube draining fluid from his brain disconnected accidentally, exposing his brain to the air for two minutes.)

But despite these setbacks, family and friends stayed by his side, constantly managing the kind of small, tedious daily tasks that helped Jason — haltingly, painfully, over years — gain his autonomy back. When he was unable to talk or move, the Crigler clan played music for him, they read him the newspaper, made jokes and sat around his hospital bed cracking each other up.

The family would visualize Jason healthy and walking and playing the guitar and encouraged him to do the same. They told him they loved him over and over again. "Most importantly, we had an open mind," Marjorie said.

http://www.youtube.com/watch?v=6sMvPPN54RE

About four months after the brain injury, Jason told me he reached the maximum $1 million cap on his New York health insurance. So his wife, Monica began searching for rehab centers that would both accept Jason and be affordable. She called Spaulding Rehabilitation Center in Boston and after hearing Jason's case, an administrator agreed to admit him with Medicaid pending.

So the family moved to Cambridge in February 2005 and Jason entered Spaulding in a vegetative state. He spent six months there as an inpatient. His progress was slow — videos show him struggling to pick up colored bean bags and essentially unresponsive to questions. Monica said that period was so stressful, she was sure she would lose her baby.

Psychologist Chris Carter, director of continuity for brain injury and spinal cord services at the Spaulding Rehabilitation Network worked with Jason and his family during that time. He said Jason's "level of injury was pretty severe and traumatic...his level of consciousness was impaired and he had limited recall."

Carter was one of the doctors who didn't believe Jason would fully recover. "I think the general consensus was we didn't think he'd get much past [the point where] he needed someone home with him all the time. The idea that he's getting around and writing music and all the things he does, we didn't think it was a remote possibility."

While the brain has a remarkable capacity for plasticity and resilience, Carter said, "it doesn't happen in a vaccuum. It requires a stimulating environment that challenges the brain and teaches it new things — you're forming new connections in new parts of the brain. It also requires lots of repetition, over and over and over again, that's how those new connections get formed — the more these cells fire together, they begin to wire together."

http://www.youtube.com/watch?v=POwEEQwRyeA

Carter added that Jason is "an important lesson: be careful about predicting the future."

After Spaulding, against the advice of doctors who thought Jason should move to a skilled nursing facility because he was unable to function on his own, the family decided to bring Jason home and provide around-the-clock care. He couldn't eat or bath alone and he often would shake violently through the night. But the family persevered: There were massage therapists and little notes and reminders plastered all around the house and outings to experience the world again. They tried to rebuild familiar connections to jump-start his memory. Marjorie said: "We were able to create an environment, a mindset which said, 'Jason can recover, Jason is an adult, What is Jason's point of view?' We helped him to keep his autonomy even though he didn't really have it - we were able to give Jason a very positive cocoon."

It didn't immediately work: during a short vacation to New Hampshire, Jason was asked on video what his favorite activity had been. "Breakfast," he said blankly. He explained that because he was eating breakfast when the question was asked and because he remembered nothing of the previous day's activities, that was the only answer he could come up with.

(Actually, Jason still has about a year-and-a-half gap in his memory. He recalls getting into the ambulance after the initial brain bleed, but then remembers nothing — not the birth of his daughter, his early rehab, nothing — until the following Christmas, about 18 months later, he says.)

But at home, Jason truly woke up. A key reason was his daughter, Ellie, born in March 2005.

[module align="right" width="half" type="pull-quote"]"It suddenly sunk in that I'd missed my daughter being born," Jason said.[/module]

"It suddenly sunk in that I'd missed my daughter being born," Jason said. This realization made him depressed. But the depression itself marked a turning point, since up until this time he hadn't felt much of anything. The depression, he recalls, "was a trigger to next phase of recovery. It was something that shot through me." He added: "When I finally made that connection, when Ellie was about a year old, I realized, 'I am her father' and I became even more motivated to be a father who could be with her."

And over time, different facets of Jason's emotional and physical past — including the reality of what had happened and what he'd lost — began to come into clearer focus. His consciousness started to reawaken.

Still, doctors continued issuing a stream of negative predictions: One said Jason would always have double vision; another said one hand would never be good for anything; another said, "the recovery will hit a plateau."

But Marjorie said these comments forced some wholesale rethinking.

"What if progress is the plateau?" she said. "What if the plateau is that he's always making little inklings of progress?"

The way to do that was to keep Jason's mind engaged in the things that mattered. The family played music for him, for instance, but not just anything on the FM dial as background noise. They played music that personally resonated with Jason: Classical Indian music, American blues, records he'd played on.

Music, in many ways, laid the foundation for recovery.

"It was a huge motivator," said Jason, who had achieved some degree of fame before the injury, having performed with Norah Jones, Marshall Crenshaw, John Cale. "It had been my profession, the thing I loved to do. I was hell bent to get it back." (Even when he first began to play again and his hands were clenched clawlike in utter pain after 10 minutes.) "I was determined to not have that taken away from me."

That discipline and work ethic, the playing and replaying, helped Jason's brain to rebuild, he said. "Having that motivation, something that you want to get back to, something you want, it's a huge thing in terms of the body's ability to recover," he said, adding: "Music had a powerful impact on my memory returning."

Kay Tye is an assistant professor at MIT's division of Brain and Cognitive Sciences who learned of Jason after moving into his old house in Cambridge and receiving a copy of a film about his recovery called "Life. Support. Music." Tye invited Jason to MIT, and after hearing him speak said she believes it was the emotional connection Jason had to music that helped restore his memory. "When you talk about waking up the brain, emotion is the key," Tye said. "Emotions are key to survival...and things that are emotionally salient are more easily remembered, more easily retrieved."

Jason's family provided that constant flow of emotionally salient stimuli, she said, and "the music could have evoked emotions that may have created the pathway for him to begin to do everything else. It was something that kept pulling him back."

The actual rituals of playing music helped: the metronome, using a kitchen timer for timing practices, restringing and tuning his guitar, learning other people's music, all of it strengthened the pathways toward remembering. When he finally played his first gig, in lower Manhattan two years after the injury, he and has family agreed: He'd finally come back.

These days Jason and his sister speak about his recovery at hospitals, schools, brain injury conferences and rehab centers. She's writing a book.

Though it's certainly true that many people with brain injuries don't recover in the ways Jason has, the majority of patients with comparable injuries "don't get the amount of care and support that he did," says Carter, the Spaulding psychologist. "We would have a higher percentage of patients recovering if his care and support were more the rule than the exception."

And Jason continues to recover.

"I deal with the injury every day," Jason said, speaking from his home in Stratham, New Hampshire. "My eyes are not what they were, my hands are not what they were, fatigue is a huge issue. There's this crushing fatigue that comes on out of nowhere."

He's had two eye surgeries and braces to fix teeth that shifted from living with tubes in his mouth for so long.

But he's functioning, writing music, performing again. Indeed, his very relationship with music has deepened. He told the crowd at MIT: "My experience is so far beyond what it was before my injury; technically there are things I can't do now which I did before, but it doesn't matter...things changed and I have this more direct pipeline between my head and my hands.

In the old days I'd be super critical of myself — as an artist, you go through these negative things in your mind. But now, I'm in this blissful beginner's mind - I can just play what I feel. My injury put me in this mental state of being a beginner in my approach to playing but I also have 20 years of experience, so I can more directly express myself on my instrument."

Finally, he said, although what happened to him on stage eight years ago was utterly random, it taught him a few things about the world. First, to doctors, he says: "They don't have to give false hope to people with these kinds of injuries, but they don't have to shut everything down either." And to everyone else: "We can't always control the things that happen to us, but we can control the way we deal with the things that happen."

This program aired on October 26, 2012. The audio for this program is not available.

Rachel Zimmerman Twitter Health Reporter
Rachel Zimmerman previously reported on health and the intersection of health and business for Bostonomix.

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