Audience Question: It’s a very big group up there, and I have to think that with family dynamics being what they generally are, there must have been some points where there were conflicts, or when people weren’t agreeing on what the best thing to do was. How did you work through those episodes?
Marjorie Crigler (Jason’s sister): There definitely were difficult times, times of disagreements or discomfort, people dealing with difficult emotions. But I think we all had the same priorities. So we had that in common. We also had Dr. Carter, once we got to Spaulding. When we met with him, he said, “Let’s go around the circle and everybody say what you can do and what you can’t do.” And that helped clarify the roles on the team. Again, our priority was Jason’s recovery; the other stuff — family dynamic stuff — just wasn’t as important.
The Crigler family. From left: Monica, Jason, Marjorie, Lynn and Carol.
Carol Crigler (Jason’s mother): We had what we called “family conference time” quite frequently. Everybody would get together, and we got pretty good at cutting to the chase and solving problems. Often the problems were family dynamics, or logistics, so family conference time was helpful.
Lou Cohen (Monica’s father): There’s also an extended family that supported the efforts of the Criglers. That included me, my ex-wife, Phyllis, her husband and other members of the family. Everybody came together. This was really a huge effort, and I remember at one point in the film Marjorie says that I’m practically a member of this family. I couldn’t agree more. At that dinner we were all talking, and it was really quite a celebration because we had gone on a huge journey together. Many of us had never spoken to each other before Jason got ill. But now, the family has come together in a way that’s kind of unbelievable.
In 2005, soon after he returned home from a year-long stay in the hospital, Jason’s family (his daughter, wife and father) take him for a walk in the woods.
Lynn Crigler (Jason’s father): One of the things that we were guided by was Dr. Carter’s advice. He said, “You should all find what you’re comfortable doing, what you feel you can do that will let you contribute in your own way.” That minimized differences and conflicts, because we all did feel comfortable. Everybody in the family had different things to contribute.
For Jason’s treatment, Spaulding was incredible, and a number of the therapists at Spaulding never gave up. If something was tried — some device that could strengthen his hands, for example — and the therapist didn’t feel that it was working properly, they’d try something else, and then something else. So that gave us faith that the therapists were doing everything they could. There was never an attitude of “Well, that didn’t work, too bad”; it was always “Well, that didn’t work — let’s try something else.” That was the Spaulding approach.
Audience Question: Jason, can you tell us more about your music?
Jason Crigler: I have a lot of attachment to the most recent CD, because I worked on this record for nine years and it’s finally done. It’s a collection of my songs, and they’re all sung by various different artists that I love, a lot of whom I’ve worked with. When I was in New York, I was playing a lot with different singers and writers. The song in the film that I sing, “The Books on the Shelf” is on this record, and that was an important song for me because it was the first song I wrote after the accident. In addition to all the physical stuff that I had to relearn and remind myself how to do, there was a huge mental component to my rehabilitation. In the beginning, it was very difficult to play the guitar, and I thought, “Can I still write music? Can I still play music?” It was really terrifying. There was a period where I was very insecure about that. And this song, which I wrote and which is in the film, “The Books on the Shelf,” put those fears to bed, because I thought, “This song is good, and I can still do this.”
In the days when I couldn’t play the guitar yet, because my hands were so tensed up, when I could only play for five or 10 minutes before I would just be in pain, it was very frustrating. But I could resume work on this record that I had already started before the injury. I could call up people I wanted to sing certain songs and I could have them come over and record them. So it was a way for me to get involved again in the music without having physically to play the guitar. So this record means a lot to me.
Hear tracks from Jason’s albums in The Music of Jason Crigler.
Audience Question: My question is for the filmmaker. Was it clear when you started this project that Jason’s recovery was going to be so wonderful? And had you considered where this film or project was going to go if his recovery was not so successful?
Eric Daniel Metzgar: When I started filming I hadn’t seen Jason for 20 months. I saw him the morning after his injury, and then I didn’t see him for 20 months or so, if not longer. By then, he was a different person. It was really depressing, personally, to be around him. I was fully aware of the family’s optimism and how far he’d come, so there was a lot to celebrate, but I was also struck by the sense of loss. And I thought, “Well, then I will center the film around how far he’s come and the family’s optimism in the face of all this and how many struggles they’d gotten through.” So I kind of thought where he was when I saw him again was where he was going to be for the rest of his life, and that the film would be retroactive, that it would be a kind of editing project and involve putting together all these materials about what had happened.
But Jason kept improving, and one of the first things I filmed was that concert where he connects with the music again for the first time. So immediately things were happening, and Jason was making subtle progress, very internal stuff, like connecting to music, bonding with Ellie, becoming a husband again. So I just kept filming and I wasn’t sure when it was going to end. And then Jason and I talked about putting this big concert together at the end as a kind of culmination, which seemed like a really great place to end the film. I loved his reflection at the end about how if strength doesn’t come out of thin air, then where does it come from? It’s an open-ended question on what fills our reservoirs of strength. I like that the film ends on that sentiment.
Jason Crigler: I wanted to add something. It’s not so apparent to a lot of people when you look at me or talk to me, but this whole thing is still ongoing for me every day. I still have exercises I do for my hands and for my eyes. I still have a lot of issues with fatigue, which I think is common for people who have a brain injury for many years after the injury. I’m told my brain is still, in fact, recovering. As my life gets busier and I start to work more and get involved in projects more, it becomes harder and harder to take the time every day to do the exercises, but I try the best I can to do them. I still feel that motivation to do them.
Audience Question: This is a question for Jason and his family. When you were actually brought to the realization that finances were possibly going to have impact on Jason’s existence, how did you deal with that? And then, Jason, did you feel that music was the catalyst to help you improve? Or was it Ellie?
Jason Crigler: I’ll just answer my portion of the question first. Both those things that you named were important for my recovery. I was really, really hell-bent on playing the guitar again. And I learned early on that Ellie had a special power to help me that was incredible. I could be feeling down about everything, and she would walk into the room and my feelings would just vanish.
Both of those things were like having a buoy to hold on to, to keep yourself afloat, to keep yourself from sinking down into the depths of your mind, because that space can be very lonely. But, yes, those two things were really primary. That and having the rest of my family — Monica and my parents and Marjorie and everybody in my family — close to me. It was all these things.
Lou Cohen: I’ll respond in terms of the money issue. My wife, Jane, who is taking care of Ellie right now and so isn’t here, used to work for a law firm that handled Medicaid issues, so she already had a great deal of experience with what happens when you run out of money and you still need medical care. So, long before Jason used up all of his insurance, we were already beginning to plan for what would be the next phase. We were prepared for a transition to Medicaid when it was needed.
When Jason got sick, he and Monica lived in New York, My wife and I lived in Boston, and the Criglers lived in New York. But Monica was about to have a baby, and there was no way that she could handle child care, hold down a job and be in the hospital all the time in New York. So everybody had to move to Boston, and Monica moved in with us. We had to transition from commercial insurance to New York Medicaid to Massachusetts Medicaid, and we had a lot of help along the way, but we also had to do a lot of preparation. All the legal experience that my wife had, plus lots of legal help along the way, made a huge difference. Also, the family was very fortunate in having received some financial gifts — from the benefit concerts — that made a big difference, not to the medical expenses, but for all the living expenses during that time and afterward. Finally, Monica was able to get a job early on, when Ellie was two months old, and that has made a huge difference as well. There were many different pieces to the financial package, but probably the most important was the government’s safety net of Medicaid. Without that, I don’t see how the recovery could have happened. It was one of the crucial elements.
Audience Question: My question is for Jason. Do you feel like your music has changed since the injury? Do you approach writing music differently? Do different things sound right to you?
Jason Crigler: I’ve been asked this question before, and it’s always tricky for me to answer. I always say that it would be better to ask somebody who has heard me before and who hears me now. But I can say that the experience of playing and writing music, for me, now, is definitely different than it was. And by that I mean I feel more connected to what I’m doing. There’s a stronger connection between what’s in my head and what comes out of my hands. There’s less interference somehow, and I feel a lot more satisfied with my playing in general. I think in the old days I was very hard on myself a lot of the time. I would always think that I could do better or play better. Now, I still have things I want to get to musically that I haven’t done yet, but I don’t come down on myself in the way that I did as much.
Hear tracks from Jason’s albums and read more from Jason about his music in The Music of Jason Crigler.
Audience Question: I have a question for Jason and Monica. It struck me, watching the film, how grateful you must be to have this film as sort of a time capsule, not only for your family but especially for Ellie. I was wondering how old she is now, and what, if any, awareness she has of the circumstances of her very early life.
Jason Crigler: It’s interesting that you ask that question now. Ellie likes to jump around a lot, and sometimes we all jump around on the bed. Sometimes she’ll get a little too rough, and she’ll knock my head or something, and we’ve told her that she has to be careful and gentle with Daddy’s head because there’s a boo-boo on my head — the bump in my head that still has a shunt in it, which the doctors put in there to drain the fluid after the injury. So last week, Ellie was having a tough time going to bed. Finally, after a while, I lay down on the floor with her. She asked me, “Daddy, how did you get the bump on your head?” It was the first time I ever actually just told her about it. I said, “Well, I had a really bad boo-boo that happened to me a few years ago. It was scary, but I’m okay now.” So, in very broad terms I told her that something happened to me and we talked about it a little bit. I said that I was at a gig playing when it happened, and that Mommy was there and got me an ambulance. She asked me what was it like being in the ambulance. So I think Ellie knows. She knows I see a lot of doctors. She knows I have exercises I do. She knows my hands don’t open up and that there’s this bump on my head. It could very well be that she knows more than we think she knows, because that often seems to be the case with other things. I think she’ll learn over time what it is. I’m excited about the day when we can actually sit down and show her the film. That’s a ways off, but that will be a cool time.
Audience Question: I have a question for Dr. Carter. How has working with Jason changed the way you continue to do what you do?
Dr. Carter: Working with Jason was a pretty humbling experience in the end. I’d been practicing for about 15 years when Jason’s case came along. As a doctor, you can get caught up in believing that you know everything there is to know and that you’re the expert. Then you get a case like Jason’s, and it reminds you that when we’re talking about the brain, we really don’t know very much at all about what’s happening.
The work that we do can be very depressing: We have a lot of stories like Jason’s. Tragedy happens to young, vibrant people through no fault of their own; their futures look bleak and grim. Often the families of these patients hear, from neurologists and doctors, that they should give up hope for the future and think about things like organ donation. So by the time these families come to us at Spaulding, they are desperate. While Jason’s story is not the typical story, it’s a reminder of what’s possible, and so I think working with Jason has changed the way I talk with families and patients about the future. The big questions that they always ask are “What’s going to happen? Am I going to go back to the life that I led? How long is it going to take? Where are we going to go from here?” Working with Jason has made it a lot easier for me to say, “I don’t know where you’re going to go. I don’t know how it’s going to turn out.”
We see the full range of what can happen. We know that the brain is a lot more dynamic and flexible than we used to think it was, and there is the idea that the brain can heal itself. But now I’m able to sit down and talk with the families about where they want things to go. I ask them, “What do you want it to look like? Create a vision.” Because that’s what the Criglers really did. They came and they said, “We don’t care what you think. We don’t care what the professionals are telling us the future’s going to be. This is the future that we want.” They were able to pull themselves together. They organized in a fantastic way and they never let go of their vision. They kept pushing, and Jason got to the point where he could become a dynamic part of that process and hold on to that vision. They didn’t give up, and I think that’s probably the biggest vehicle that got Jason where he is.
I can’t guarantee the families anything. I can’t say, “Well, you just do what they did and it can turn out like this,” because it doesn’t happen all the time. But what else are you going to do? If you do give up, then it won’t turn out that way; if you stop working, a recovery like Jason’s definitely isn’t going to happen.
Marjorie Crigler: The concept of a doctor saying, “I don’t know,” strikes me as very interesting. Early on, when Jason was not communicative, a doctor said to us, “We don’t really know what it’s like in that twilight state.” It was an offhand comment, but it encouraged us to keep doing what we were doing, which was reading to him, talking to him, playing music even when he wasn’t responding. Hearing that doctor’s “We don’t know,” I understood that a door was still open and the book was still being written on what was possible for Jason’s recovery and he still had a chance.
Lynn Crigler: Marjorie very simply said one night, “At the end of the day, as far as the family’s concerned, regardless of the outcome, you want to feel like you’ve done everything you can.” That really is what it is in a nutshell.