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Amazing Brain Injury Recovery
By KIMBERLY PAPA
In the summer of 2004, Jason Crigler's life was pretty close to perfect. The 34-year-old was a successful guitarist in New York City, playing with the likes of Norah Jones and Marshall Crenshaw, and his new CD was about to be released. His wife, Monica, was pregnant with their first child. But on August 4th, while playing a gig, Jason's world came to a screeching halt. He suffered a near-fatal brain hemorrhage and went into a vegetative state.
The doctors said it didn't look good. He had suffered from an arteriovenous malformation hemorrhage, which are rare, but tend to occur most often in young people. They didn't know if Jason would live, and if he did, they didn't know what would be left of him -- the bleeding had been severe, and he didn't have very much brain function left. Even though the prognosis was grim, Jason's family -- his parents, his wife and his sister -- refused to accept that he couldn't get better. They devoted themselves to round-the-clock care and rehabilitation. For the next year and a half Jason remained unconscious. When Jason was moved from St. Vincent's Hospital in New York City to Spaulding Rehabilitation Hospital in Boston, his New York-based family moved with him. The progress was slow, but with each improvement -- the ability to blink, to swallow on his own, to say "Hi," and to take a step -- Jason began to defy what doctors thought his outcome would be.
Eventually, his family brought him home, where the intensive care continued. They dressed, fed and bathed him. They took him to therapy appointments and continued to try to stimulate his brain as much as possible. Slowly, pieces of the old Jason began to emerge. Today, nearly five years later, Jason has made a 90 percent recovery from his brain injury. His family rallied around him, and together they defied the medical odds stacked against them.
Jason's filmmaker friend, Eric Metzgar, documented this incredible journey in "Life. Support. Music.," which premiered last week on PBS. In it, you can see footage from Jason's earliest days at the rehabilitation hospital woven in with interviews of his family, with footage of Jason now.
AOL spoke with Jason about his harrowing experience and how his life has changed since his brain injury.
AOL Health: Before the night of August 4, 2004, when you had the brain hemorrhage, were there any warning signs? Did you have any symptoms, such as headaches?
Jason Crigler: Believe me when I tell you, there was nothing. I was doing yoga four days a week; I was in great shape and eating well. I had a very active professional life, playing music most nights of the week and touring. There was nothing. I was in a good state of mind, in a good mood and active in every way. Even the night it happened, I remember having dinner at a little place near the club and the sound check, and there was no problem whatsoever. It was like a lightening bolt out of the blue.
AOL Health: Do you remember actually having the hemorrhage?
Crigler: I remember running off stage in the middle of the set and grabbing my wife, Monica. I remember being outside and getting down on the sidewalk and being put in the ambulance, but from that point my memory is gone for about a year and a half. It's just gone.
AOL Health: You were in a vegetative state during that time. Did you have any sense of what was happening to you, or any feeling of wanting to communicate or move and being simply unable to?
Crigler: I was conscious at some points within that time, and later people would tell me about conversations I had with them, but I don't remember any of that. Over time, little bits and little fragments have poked through -- I remember taking a shower or being excited to walk to a certain point in a hallway. We know now that I was definitely taking stuff in. There was a particular CD that my mom purchased while I wasn't conscious. It was music from India, which I had never heard before that she would play every night before she left. Like a year after I had come home she put it in, and I knew every song on the CD, yet I don't remember hearing it.
AOL Health: Is it frustrating to lose such a large piece of your life?
Crigler: I wouldn't say it's frustrating, and a lot of my family says I wouldn't really want to remember it, because it was mostly lying in a hospital bed and not being able to do much. So it was actually probably better in the big picture.
AOL Health: Has seeing the film and getting to, in some way, be a part of that time been a positive thing for you?
Crigler: At first it was bizarre, but now I can feel proud more than anything because I'm at a point in recovery where if you were to see me and talk to me face-to-face you wouldn't know anything was wrong. When I see that footage of me from Spaulding [the rehabilitation hospital] it's a huge reality check, because I can clearly see how far Ive come. So it makes me feel good in a weird way.
AOL Health: When you came home from the rehabilitation hospital, were you completely conscious? Was there one specific day where you woke up and felt like you were "back?"
Crigler: No, it didn't work like that. It's like my memory very gradually, in a very hazy manner, came back online. It's not like all of a sudden one day it clicked on. In the fall of 2005 there are little patchy shards of memory -- Halloween that year, Thanksgiving, shopping for presents in the North End in Boston. Then in 2006, it starts to fall into a more normal, linear pattern.
AOL Health: It's amazing to come back from an injury that many people wouldn't be able to. What do you think made your recovery so special?
Crigler: A lot people might if they were given more of a chance. I have a certain temperament and strength of character where I am a very diligent worker, but I don't think I would have been able to do this were it not for the incredible support from my family. They basically decided how this was going to go in the face of a lot of medical folks saying, "We don't know if he will ever do this or that." So you've got to wonder what would happen if people were given more of a chance, or if doctors leaned more toward the optimistic side of things -- and that doesn't mean that the situation for everyone would turn out like this, but maybe more would.
AOL Health: Your daughter, Ellie, was born while you were in the rehabilitation hospital. The film shows you meeting her for the first time. Do you have any recollection of the first time you saw her?
Crigler: Sadly, I do not remember. My earliest memories of Ellie are sometime in fall of 2005. Monica would bring her to Spaulding, but the part I remember was when I was home. I remember Monica would bring her over to me every day, and I would be trying desperately to be on the floor and play with her, so I remember that difficulty. But at that time, things weren't working enough for me to even have a sense that this was my first-born child and how amazing that was. I was just sort of doing what I was told. I mean, I knew she was my daughter, but I didn't have a sense of the hugeness of that. It was only later that I felt the sadness of missing her being born, and Monica being pregnant, and Ellie's early days and months. Missing that caused me a lot of feelings of sadness, but now I feel at peace with it as much as I can. There will always be a part of me that will be like, "Darn!" because I would have loved to experience her first coming into the world. That would have been incredible. But I can quickly counter it by saying if things had been just a little different I wouldn't be here at all right now. So it's a pretty decent trade-off, all things considered.
AOL Health: Does your life feel very different than it did before the injury?
Crigler: It's like night and day. I remember all the things I did before the injury, but I have a hard time remembering that person -- the "me" before the injury. Pre-2004, I don't know what he was thinking, exactly. I remember people I knew and ways I felt, but everything feels more precious to me now. Moments feel more precious. I'll stop and take a mental snapshot and just think, "God, this is incredibly precious right now," and I don't remember that before. So there's a huge appreciation for things.
AOL Health: Music was an important part of your life before this happened. How big a motivator was getting to play the guitar again in you recover?
Crigler: It became a huge one. Those first five or six months I was home, I wasn't aware of anything outside the present moment. I didn't have the ability to focus on more. Once I got past that, the next stage was focusing on the things I wanted to do, and the biggest thing was playing the guitar again. So it became a huge driving force to help me recover. As difficult as it was at first, I wanted more than anything to be playing and creating music. It was incredibly frustrating. In my head I could remember how to do everything. I could remember songs, and scales and chords, and I could hear things in my head that I wanted to do, but couldn't get my fingers to do what I wanted to do. They were so clenched up -- almost like claws -- because of the bleed, so I couldn't play for more than five, ten minutes without just being in pain. My fingers didn't want to work. So it was really frustrating and ultimately depressing because I knew it all -- I just couldn't do it. I worked with an occupational therapist in Boston who specializes in working with musicians, and she had me do very basic exercises that I would do every day -- starting just five minutes at a time and upping the time a little bit each week. And I gradually got to the point where I could play with friends, then play a full set with some people, and it built up from there.
AOL Health: Are there still things that you know how or want to do, but still can't quite do at this stage of recovery?
Crigler: There isn't anything that really tugs at me, so I am happy with where I am. I want to improve my eyes, and there's nerve damage in my left foot, so I can't really run so easily, but they are little things -- nothing I lose sleep over. The biggest thing for me now is fatigue, and most people with a brain injury will tell you that stays with you for years after the injury. Technically speaking, my brain is still repairing itself. The brain is complex, and it's still healing. So I need a lot of sleep and a lot of naps.
AOL Health: Since you recovered, you have been speaking to people living with brain injuries. What motivated you to start speaking?
Crigler: The speaking happened naturally because of the film. The film would show at festivals, and I went to a good number of them, and then I would do a Q & A session after. There would be survivors and their family members in the audiences, and just seeing their response to the film, it felt so good. It felt like a way to give back, and a way to make what happened to me feel like it made sense. It brought order to the chaos in my mind. For so long I would think, "Why would this happen?"
AOL Health: Did you meet anyone during your recovery who inspired you?
Crigler: Yes, Trisha Meili [the Central Park jogger who suffered severe brain injuries after being beaten in 1989]. She recovered from a very similar state to what I was in, and when I was at Spaulding she came and spoke. It made a huge impact on me. When you have something like this happen and you are recovering, it's an incredibly isolating and lonely experience. I had the benefit of being surrounded by people who loved me, and they helped me so much, and yet I still felt these feelings of loneliness that come from the fact that no one can really understand what you're going through. You can't communicate in the way that you want, and nobody can really relate to it. So to hear someone who has actually been there -- it's this incredible sense of relief. It's like, "Oh, my God, she knows what it's like." So when I speak to people now, I can feel they have the same reaction. I get e-mails all the time saying that they feel that way. So that aspect of it is very exciting.
AOL Health: Do you have plans to continuing to reaching out to others who have suffered from brain injuries? Crigler: We've had a good run of speaking at various brain injury associations across the country, and I'd like to keep that going. When something like this happens, there are so many things that I could feel bad or depressed about, so it's making a conscious choice to see the good in it. The speaking work is an example of taking a bad situation and twisting it around to something incredibly positive. My sister Marjorie and I have this whole multimedia program called Defying the Odds with video and testimonials about what went into my recovery, what my family's experience was, what my experience was. We show how even when people didn't think I was there, that there were signs that I was taking stuff in. To be able to share this story with other people who are who going through a similar thing, it's incredible. It's a true high to be a part of that.
The doctors said it didn't look good. He had suffered from an arteriovenous malformation hemorrhage, which are rare, but tend to occur most often in young people. They didn't know if Jason would live, and if he did, they didn't know what would be left of him -- the bleeding had been severe, and he didn't have very much brain function left. Even though the prognosis was grim, Jason's family -- his parents, his wife and his sister -- refused to accept that he couldn't get better. They devoted themselves to round-the-clock care and rehabilitation. For the next year and a half Jason remained unconscious. When Jason was moved from St. Vincent's Hospital in New York City to Spaulding Rehabilitation Hospital in Boston, his New York-based family moved with him. The progress was slow, but with each improvement -- the ability to blink, to swallow on his own, to say "Hi," and to take a step -- Jason began to defy what doctors thought his outcome would be.
Eventually, his family brought him home, where the intensive care continued. They dressed, fed and bathed him. They took him to therapy appointments and continued to try to stimulate his brain as much as possible. Slowly, pieces of the old Jason began to emerge. Today, nearly five years later, Jason has made a 90 percent recovery from his brain injury. His family rallied around him, and together they defied the medical odds stacked against them.
Jason's filmmaker friend, Eric Metzgar, documented this incredible journey in "Life. Support. Music.," which premiered last week on PBS. In it, you can see footage from Jason's earliest days at the rehabilitation hospital woven in with interviews of his family, with footage of Jason now.
AOL spoke with Jason about his harrowing experience and how his life has changed since his brain injury.
AOL Health: Before the night of August 4, 2004, when you had the brain hemorrhage, were there any warning signs? Did you have any symptoms, such as headaches?
Jason Crigler: Believe me when I tell you, there was nothing. I was doing yoga four days a week; I was in great shape and eating well. I had a very active professional life, playing music most nights of the week and touring. There was nothing. I was in a good state of mind, in a good mood and active in every way. Even the night it happened, I remember having dinner at a little place near the club and the sound check, and there was no problem whatsoever. It was like a lightening bolt out of the blue.
AOL Health: Do you remember actually having the hemorrhage?
Crigler: I remember running off stage in the middle of the set and grabbing my wife, Monica. I remember being outside and getting down on the sidewalk and being put in the ambulance, but from that point my memory is gone for about a year and a half. It's just gone.
AOL Health: You were in a vegetative state during that time. Did you have any sense of what was happening to you, or any feeling of wanting to communicate or move and being simply unable to?
Crigler: I was conscious at some points within that time, and later people would tell me about conversations I had with them, but I don't remember any of that. Over time, little bits and little fragments have poked through -- I remember taking a shower or being excited to walk to a certain point in a hallway. We know now that I was definitely taking stuff in. There was a particular CD that my mom purchased while I wasn't conscious. It was music from India, which I had never heard before that she would play every night before she left. Like a year after I had come home she put it in, and I knew every song on the CD, yet I don't remember hearing it.
AOL Health: Is it frustrating to lose such a large piece of your life?
Crigler: I wouldn't say it's frustrating, and a lot of my family says I wouldn't really want to remember it, because it was mostly lying in a hospital bed and not being able to do much. So it was actually probably better in the big picture.
AOL Health: Has seeing the film and getting to, in some way, be a part of that time been a positive thing for you?
Crigler: At first it was bizarre, but now I can feel proud more than anything because I'm at a point in recovery where if you were to see me and talk to me face-to-face you wouldn't know anything was wrong. When I see that footage of me from Spaulding [the rehabilitation hospital] it's a huge reality check, because I can clearly see how far Ive come. So it makes me feel good in a weird way.
AOL Health: When you came home from the rehabilitation hospital, were you completely conscious? Was there one specific day where you woke up and felt like you were "back?"
Crigler: No, it didn't work like that. It's like my memory very gradually, in a very hazy manner, came back online. It's not like all of a sudden one day it clicked on. In the fall of 2005 there are little patchy shards of memory -- Halloween that year, Thanksgiving, shopping for presents in the North End in Boston. Then in 2006, it starts to fall into a more normal, linear pattern.
AOL Health: It's amazing to come back from an injury that many people wouldn't be able to. What do you think made your recovery so special?
Crigler: A lot people might if they were given more of a chance. I have a certain temperament and strength of character where I am a very diligent worker, but I don't think I would have been able to do this were it not for the incredible support from my family. They basically decided how this was going to go in the face of a lot of medical folks saying, "We don't know if he will ever do this or that." So you've got to wonder what would happen if people were given more of a chance, or if doctors leaned more toward the optimistic side of things -- and that doesn't mean that the situation for everyone would turn out like this, but maybe more would.
AOL Health: Your daughter, Ellie, was born while you were in the rehabilitation hospital. The film shows you meeting her for the first time. Do you have any recollection of the first time you saw her?
Crigler: Sadly, I do not remember. My earliest memories of Ellie are sometime in fall of 2005. Monica would bring her to Spaulding, but the part I remember was when I was home. I remember Monica would bring her over to me every day, and I would be trying desperately to be on the floor and play with her, so I remember that difficulty. But at that time, things weren't working enough for me to even have a sense that this was my first-born child and how amazing that was. I was just sort of doing what I was told. I mean, I knew she was my daughter, but I didn't have a sense of the hugeness of that. It was only later that I felt the sadness of missing her being born, and Monica being pregnant, and Ellie's early days and months. Missing that caused me a lot of feelings of sadness, but now I feel at peace with it as much as I can. There will always be a part of me that will be like, "Darn!" because I would have loved to experience her first coming into the world. That would have been incredible. But I can quickly counter it by saying if things had been just a little different I wouldn't be here at all right now. So it's a pretty decent trade-off, all things considered.
AOL Health: Does your life feel very different than it did before the injury?
Crigler: It's like night and day. I remember all the things I did before the injury, but I have a hard time remembering that person -- the "me" before the injury. Pre-2004, I don't know what he was thinking, exactly. I remember people I knew and ways I felt, but everything feels more precious to me now. Moments feel more precious. I'll stop and take a mental snapshot and just think, "God, this is incredibly precious right now," and I don't remember that before. So there's a huge appreciation for things.
AOL Health: Music was an important part of your life before this happened. How big a motivator was getting to play the guitar again in you recover?
Crigler: It became a huge one. Those first five or six months I was home, I wasn't aware of anything outside the present moment. I didn't have the ability to focus on more. Once I got past that, the next stage was focusing on the things I wanted to do, and the biggest thing was playing the guitar again. So it became a huge driving force to help me recover. As difficult as it was at first, I wanted more than anything to be playing and creating music. It was incredibly frustrating. In my head I could remember how to do everything. I could remember songs, and scales and chords, and I could hear things in my head that I wanted to do, but couldn't get my fingers to do what I wanted to do. They were so clenched up -- almost like claws -- because of the bleed, so I couldn't play for more than five, ten minutes without just being in pain. My fingers didn't want to work. So it was really frustrating and ultimately depressing because I knew it all -- I just couldn't do it. I worked with an occupational therapist in Boston who specializes in working with musicians, and she had me do very basic exercises that I would do every day -- starting just five minutes at a time and upping the time a little bit each week. And I gradually got to the point where I could play with friends, then play a full set with some people, and it built up from there.
AOL Health: Are there still things that you know how or want to do, but still can't quite do at this stage of recovery?
Crigler: There isn't anything that really tugs at me, so I am happy with where I am. I want to improve my eyes, and there's nerve damage in my left foot, so I can't really run so easily, but they are little things -- nothing I lose sleep over. The biggest thing for me now is fatigue, and most people with a brain injury will tell you that stays with you for years after the injury. Technically speaking, my brain is still repairing itself. The brain is complex, and it's still healing. So I need a lot of sleep and a lot of naps.
AOL Health: Since you recovered, you have been speaking to people living with brain injuries. What motivated you to start speaking?
Crigler: The speaking happened naturally because of the film. The film would show at festivals, and I went to a good number of them, and then I would do a Q & A session after. There would be survivors and their family members in the audiences, and just seeing their response to the film, it felt so good. It felt like a way to give back, and a way to make what happened to me feel like it made sense. It brought order to the chaos in my mind. For so long I would think, "Why would this happen?"
AOL Health: Did you meet anyone during your recovery who inspired you?
Crigler: Yes, Trisha Meili [the Central Park jogger who suffered severe brain injuries after being beaten in 1989]. She recovered from a very similar state to what I was in, and when I was at Spaulding she came and spoke. It made a huge impact on me. When you have something like this happen and you are recovering, it's an incredibly isolating and lonely experience. I had the benefit of being surrounded by people who loved me, and they helped me so much, and yet I still felt these feelings of loneliness that come from the fact that no one can really understand what you're going through. You can't communicate in the way that you want, and nobody can really relate to it. So to hear someone who has actually been there -- it's this incredible sense of relief. It's like, "Oh, my God, she knows what it's like." So when I speak to people now, I can feel they have the same reaction. I get e-mails all the time saying that they feel that way. So that aspect of it is very exciting.
AOL Health: Do you have plans to continuing to reaching out to others who have suffered from brain injuries? Crigler: We've had a good run of speaking at various brain injury associations across the country, and I'd like to keep that going. When something like this happens, there are so many things that I could feel bad or depressed about, so it's making a conscious choice to see the good in it. The speaking work is an example of taking a bad situation and twisting it around to something incredibly positive. My sister Marjorie and I have this whole multimedia program called Defying the Odds with video and testimonials about what went into my recovery, what my family's experience was, what my experience was. We show how even when people didn't think I was there, that there were signs that I was taking stuff in. To be able to share this story with other people who are who going through a similar thing, it's incredible. It's a true high to be a part of that.
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