The Other Breakfast Club

[car crashing] [♪upbeat music♪] [paramedics chattering] [♪♪] [helicopter whirring] [♪♪] [ventilator hissing] [sighs] What do I want to say about traumatic brain injury? Traumatic brain injury is the most misunderstood injury, I think, that's out there. It can be small or big. And then the aftermath that one encounters after the injury is just amazing because it's watching each system shut down and then restart again--if you're so lucky. [♪♪] [The Other Breakfast Club] [♪♪] [female speaker] Amber probably struggled the most with memory challenges. She too had very severe memory challenges. She was a college student at the time of her injury, and she couldn't remember lectures. She'd read materials over and over and over and still have no idea of what she read. It was very frustrating to her. [♪♪] [female speaker] When David was a little boy, he was the most cautious child I have ever seen, very cautious. Even when he was starting to walk, he would crawl and just hang on to things. He didn't really want to do anything that was risky. [♪♪] [female speaker] We have a lot to be thankful for because she has done very, very well. I feel like God answered those prayers. I give Amy back to him for whatever he wants to do with her life. I think he has special plans for her. [♪♪] [female speaker] Kelley is an exception in a lot of ways. Her attitude from the very beginning was one of good humor and courage. There was nothing that I ever suggested that Kelley pooh-poohed or said, "I won't try." [♪♪] [female speaker] For Adora, she believed she would be a month. She said, "I just need to go home. I'll be fine." "Just one month and I'll be out of here." "I'll be walking, I'll be returning to my former life and I will be able to take care of my cat." That was her main goal is to take care of her cat again. [chuckles] [club chattering] The whole thing in the beginning is that they need to survive, they need to get past that critical stage. [♪♪] I remember just before his accident he took me to the Marne Raceway. And we went around the S curve in Grand Rapids, and we were clipping right along. And I'm sort of hanging on. [tires squealing] We made it to the raceway, and I said to him, "David," I said, "Make sure your heart is right with the Lord because you're going to die this car "if you keep up like this." And three weeks later I got the call. I think I was going around the corner probably too fast. I really don't remember the accident all that well. It was the start of a three-month coma. Basically, I woke up in the hospital and I was like, "What?" I thought it was a dream totally. [crashing - glass shattering] [female speaker] I was rounding a little curve on the expressway. So I couldn't see. I couldn't see the traffic backed up. And I came right upon stopped traffic. I would always speed on the road right before I got home and just getting going, like, 80. [tires squealing] Apparently I lost control, which was bound to happen, and I hit a tree with the passenger side of the car. I was the only one inside. The third time that she called, the sheriff answered the phone, and the Kent County sheriff saying that the girls had been in a very bad accident. Both girls were unconscious. A semi stopped in front of me. and I knew I couldn't stop. In hindsight, it would have been better to hit the guy in front of me but to avoid hitting him I went to the side and a truck hit me from the side, and... I think I was just in a car just screwing around, going too fast, and the passenger side wheels went into the ditch, sucked me in. I went into a fresh alfalfa field and it shot me out and I flipped front end over back end five times. I was airborne. I hit the ground five times within an eighth of a mile. So you do the math. This is a model of the brain, about life size. It's fairly easy to take it apart. It's going to be a lot harder to put together after you've had an injury to the brain. [buzzing sound] With working with the traumatic brain injury population, not everyone will survive. [♪♪] A lot of the injuries we see are because of risk-taking behavior, drinking and driving being one of the biggest ones, which leads you down to things like racing cars at high rates of speed and not having good judgment. Some are the result of things that are purely accidental: bad road conditions; people driving too fast; slick, icy roads; not being able to stop in time; being sidetracked; talking on cell phone and eating and drinking and doing other things other than just driving the car like they should be doing. I wish that driver's ed courses, that part of that was going into a Mary Free Bed or a Hope Network and seeing that it isn't just an accident that you're sick for a while and you get up and you're done. It's not like breaking a leg or breaking an arm. When you get done with this, you are not the same person you were before it happened. And I don't know if you can understand that at 16 or 17 years old, how it changes absolutely everything. I obviously don't think I could even speak. I was like, "Blah, blah, blah," and nobody really knew what I was saying. I didn't know I could not walk. Just all those little things that you think you know how to do, then when it comes down to it, when you try to do them, you can't. There's a recognition that the things that we work on with people are things that four- and five-year-olds are learning to do developmentally that 18 to 35, and sometimes older than that, those people are having to relearn to do it. I had to learn how to walk, swallow, tie my shoes. My grandmother showed me how to tie my shoes. To me it's like it's a constant struggle because you take two steps forward, three steps back, then three steps forward, two steps back and it's a constant juggling act to get my life back. My voice was my best friend. It meant more to me than anything. And then, of all things, when the wreck happened, my voice was the one thing that was dear to me. It was the one thing that got taken away. I can't tell you how much I cried about it. It's a struggle. It usually takes longer to recover than people expect. There are usually more issues involved than they expect--for example, having to go retake a driving test. It's hard for people to recognize sometimes that they have more impairments than they think they do, and they have to go through more hoops to regain the independence that they are used to. [machine humming] [♪♪] I think the most difficult thing would be having them gain an awareness of their deficits and how it's going to tie in to their former lives and whether or not they can resume some of the roles that they had previously. [machine humming] A lot of the population that we work with are young people generally aged 18 to about 35. And a majority of them are male just based on males in that category take more risks. And a lot of the times people that we work with have varying levels of brain injury, whether it's a concussion, whether it's a truly traumatic brain injury or whether it's something somewhere in between on that continuum. [therapist] Arm up there. Nice job. Tall. Tall through here. Good. [♪♪] Nice job. I don't know where it comes from, why I have this urge to go fast. I always have. [car engine revving] It's just an inner hormone-like thing where guys have got to go fast, fast. [engine revving] At the end of those commercials when they're saying, "This was done by a professional driver on a closed course," I always thought I was a really professional driver. But I was never on the closed course. Instead, I was rolling end over end through a hayfield. One of the guys that I've worked with in the past is Dave Tubergen. He's a young guy that had a pretty significant injury following a multiple rollover accident. And his injury was severe enough that he needed to be airlifted to a hospital. It was his best friend who called me, and he was just hysterical, and he said, "They're airlifting David." The first thing I said-- Paulie was just crying and crying and I said, "Is he dead?" And Paulie said, "I don't think so, but they're airlifting him now." [helicopter whirring] The majority of patients who are transported with traumatic brain injury are young men who are involved in car accidents. [♪♪] The way I look at it is we provide an opportunity to save a life. There is only so much we can do. [♪♪] The Aero Med team in the helicopter is just one link in a chain. [♪♪] I know they talk about the golden hour. I fly as fast as I can every time. I fly as fast as I can going, coming and as safely as we can, primarily. That's the most important thing. [♪♪] [helicopter whirring] I remember when he was first injured and they allowed me to put music in his room. I'd put Norah Jones on. I loved Norah Jones. [♪Norah Jones' "Don't Know Why" playing♪] It's the most beautiful song, and if you listen to it, it's almost like a mother's prayer to a kid to come back. I'm sure most parents have said, "It's not you usually. It's the other drivers." And boy, is that a true statement. And a lot of the times I was that other driver that people had to watch out for. I had a speaker box come from the back of my car, and when the speaker box-- I had the back seats folded down--when the speaker box came, it put a hole probably about this big in my head. And they had to wait two years for much bone to-- Your bone kind of forms layer over layer, and I had a hole and they wanted to see how much that hole would close up before they went and put a plate in. And so they just put a piece of titanium and ABS plastic in my head a couple months ago. And sometimes I get a little miffed because I'll say to David now that he's with us again and can really understand what I say to him, I say, "Do you remember?" "Do you remember crawling on the floor or trying to drop a ball "and you couldn't even make your hand grab the ball?" I say, "Do you remember all that?" "No." I say, "Do you remember anything out of the hospital?" "No." And I thought, "Well, I do and your father does "and your sisters and your grandparents." It was hard. [crying] [sniffles] [♪♪] I like to look at cognition as much like the universe and language as like the earth. It's a very important part of that universe but it's not all of it. [to patient] Okay, Jane. Let' s take another bite of ice cream. For example, someone learning to eat again. We take for granted how easy it is for us to pick up a spoon, scoop the ice cream and take that bite. But if you think about all of the components of that-- what the spoon feels like in your hand, the movement from the ice cream to your mouth, what that ice cream feels like in your mouth-- we take for granted--and where it needs to be in your mouth to swallow. [to patient] Open now. Open now. Do you feel it? Kind of bring your shoulders down. Bring your head down. Part of what I do is connect the language part of cognition with the action part of cognition and bring it together to make it a functional activity such as eating. [♪♪] [Kelley] Before my crash, I was 24, living in Chicago. I had moved to Chicago right after I had graduated from college with a bachelor's in communication and lived there on my own in a studio apartment in the city. [♪♪] One of the most frustrating things for me has been myself because I've probably sabotaged myself--not being aware of it but fighting against the idea that there is anything wrong with me. Well, obviously there is or I wouldn't be here. [chuckles] When we first met, Kelley was barely able to sit on a mat table. In fact, when she did sit on it, she'd have to hold on for balance. She didn't have any kind of protective reaction, so if she started to fall, she couldn't even begin to catch herself. She could walk, but it took her--let me remember-- about 35 minutes to walk 170 feet. Kelley used to get lost. She had what we call problems with topographical orientation. So she'd go down the hallway and all of a sudden we'd hear this big laugh and, "I'm lost again! Somebody get me!" Simple things--she couldn't find her way around, she couldn't roll over, she couldn't scoot up and down in a bed. Even simple movements that we take for granted, like turning or twisting, were enough to knock her over. [♪♪] That's a double-edged sword because yes, one has to-- at least I've had to readjust, but is it good or bad? No. It just is what it is. [♪singing "Twist and Shout"♪] [teachers and students chattering] I love what I am doing now. I love the people that I work with now. [to students] I'm signing in. I'm working for a preschool in Grand Rapids, so I'm working with little three- and four- and some five-year-olds. I'm just one of them. I'm down at their level and they don't see it as any different, which is great because you just can't imagine how powerful it is to be able to expose these young children to the differences that are out there in the world and have them be at ease with it. You don't want one person giving their opinion; you want a team of them. It often takes a dedicated group of people working closely together, checking their own egos at the door and making sure that the welfare of the patient comes first. That means working together, agreeing what the goals are and involve the patient and the family in that process. Make sure that you work on what's important for them, not what's just interesting for you. [female speaker] I have a red cone in my hand. I need you to open your eyes and look right at that cone. Good. Now I want you to try to follow it with your eyes, okay? I'm going to move it over. You follow it. It's been estimated that over 50 percent of patients that have suffered a neurological condition have disturbances in their vision. [Decker to patient] Okay, Jane. See this cone? Follow it with your eyes. Good. Reach out and stack it up. Excellent. Good job. Very good. Problems with your vision can significantly impact balance, coordination, decision making. It's like asking somebody to summarize a novel if they've only read page 20 and 82. [to patient] Good. Excellent job. [♪♪] Being involved with the patient's family is huge. We do most of our family education, really intense family education, within the first two or three weeks that the patient is here. [mother to daughter] I love you. Good job. [Decker] We keep them as involved in their therapy as possible. [mother to daughter] Good job. I love you. Good job. [♪♪] It's amazing how the human brain works. Sometimes, even with a lot of injuries seen inside the head, they recover really quickly. And it surprises us how well they think and recognize deficits and get back to a level of independence that we wouldn't have expected. [Gastineau to patient] Here we are. Let me put this down. [♪♪] Goal. >>Goal. [Gastineau] There you go, because we're listening for the G sound the most. Good job. Gate. [♪♪] Gate. >>Good job. How do you help a person that's lost a lot and still let them feel like they have a say in their lives and allow them to be their own person? Cooking. >>[patient attempts word] I'll take it. Good. We got both of them. Okay, we're moving on to a K sound. In therapy, all patients struggle with the same issues. They are fighting loss of independence, they're fighting loss of thinking skills, and it's a struggle. It usually takes longer to recover than people expect. [♪♪] [to patient] Now here's two. Cake. [♪♪] [attempts word] [Gastineau] There you go. You got both of them. All right. [♪singing "Blessed Be the Name of the Lord"♪] [R. Tromp] The first real key to me that she was hurt as critically as she was was I was assigned a chaplain who stood by me, so I knew at that time it was extremely serious. I just kept praying that Amy would be all right, that somehow she would pull through. And one day when I walked in the hospital room, she had not come out of her coma yet, but when I walked in the room, she said, "Hi, Mom." And it was the most precious words I'd ever heard in my life. [♪Amy playing Beethoven's "Fur Elise"♪] [♪"Fur Elise" recording playing♪] Pretty much she had to start all over again, learning to hold a toothbrush even to brush her teeth, learning to comb her hair, learning to dress herself. Those were all things that she no longer could do. And even things like writing, I didn't remember how to form my hand to make the letters and things. I was unable to write. And because her balance was off--she had a fracture near the inner ear, so that caused her to feel like she was on a ship, on water. [♪♪] And if you watched her walk, everything, all the walls moved because her balance was all off. [♪♪] [male speaker] Making a cup of tea seems like a very common, very easy job, but if you try to sequence it, you as a person have to have a physical control to be able to move and pick up that cup, warm up the water, pour water, mix milk, sugar, whatever you need to. It seems very simple, but if you cannot think that what are you doing, what is the sequence, how to organize the sequence, how to execute the sequence, I think it's a very hard job. [♪"Fur Elise" continues♪] Occupational therapy is a segment of rehab, and we use occupation for therapy. All right, Jane. Do you know what I want you to do today? Go to the kitchen? Yeah. We're going to open that cupboard and get a cup and then get the milk from the fridge, pour that milk and bring it to the table. Okay. Your occupation could be getting dressed, making a sandwich for yourself. Your occupation could be playing golf. Your occupation could be taking a shower. So anything that you do from the time you wake up till the time you go back to bed is occupation. Oh, oh, oh, oh. What are you trying to do? You've got to get a little closer, as far as you can, otherwise we're both going to be on the floor. [♪mellow music♪] Yeah, that's good. [both chuckle] You're funny. [Thamman] You are dealing with people who are suffering from pain, people with no memory, maybe no sequencing. They cannot even understand where they are. And you start from there, and you bring them back to life, and they can go back to work. I think that's a very rewarding job. All right. Try again. [♪♪] Not bad. That's good, that's good. Are you going to bring the whole cup? Yeah. >>All right. [♪♪] I actually really enjoyed both my boyfriends that I had at that time. One boyfriend was definitely one that him and I went skydiving, as you could say. We went on skiing trips. We went on all these different adventurous kind of a lifestyle together. And then my other boyfriend was more like a serious deal. [♪♪] My friends in high school, we did a lot of rebellious things. We partied and all this stuff, but that was then, this is now. [therapist to patient] Clap your hands at the back. [O. Julius] I am very tough on my clients. I believe that 50 percent is their own effort, but 50 percent or even more is really what the therapist brings to it and what you put into them. And I believe input equals output, so as much as I can drive them and put into them and not just pampering but really pushing them is how I've gotten the results I've gotten over the years. I'm very thankful that this happened because I can continue on from this point knowing where I'm going to be going, what I'm going to be doing. I have a better idea of what I want to do, and that would never have been possible. [walker squeaking] Young men especially find it very difficult if they have problems with their walking and being able to make that trust factor of relying on somebody else to assist them. [walker squeaking] We look for the best long-term outcomes. We address all kinds of mobility, including their access to the bathroom. Being able to transfer to the toilet is a huge issue dealing with independence. Patients want to take themselves to the bathroom. They don't want to have to rely on somebody else to be able to assist them. One of the hardest things that we have to tell a lot of our patients is they're not safe to go by themselves. They have to call and ask for help. [to patient] Stand up tall. Good. People usually overestimate their abilities in the early stages, and they don't want to rely on somebody else to assist them. [♪drumbeat♪] I like to say to my clients it's a muscle and a bone, and if you work them you will see the progress or it will change. I worked a long time with Adora because of her severe car accident. A big part of the problem was that she had movement problems. She couldn't move. She was very uncoordinated. [♪♪] My name is Adora and I had a brain injury four years ago. And now my voice which you hear, that's disabled. Adora. Yeah, voice. A lot of voice therapy with Adora. Before, I sang and my voice was my voice. Now my voice is things like this. My voice is my art. My art is how I sing now. Before her accident in high school, she was a member of the choral group. She was working with a vocal coach. Singing was a large part of her life before her injury. [♪singing "Weep You No More, Sad Fountain"♪] My boyfriend at the time listened to a tape of me singing from back then, and he had the headphones on and he was like-- And then at that point I knew, to him especially, I was my voice. So without my voice I felt I wasn't a person anymore. [♪♪] [applause] [♪upbeat music♪] This is an example of something I did after my wreck. And it's a perfect example of the work I do now. You can tell what's there but it's distorted and kind of fun and disorganized and messy--like my place. But people said that my paintings capture so much personality of the person and that reflects another thing about my wreck. My wreck made me more in tune with what's going on inside people. It took a long time to gain trust in us and to develop a relationship. She just wanted to get out of here, didn't want to initially build real close relationships. For her it was just a temporary move. The big start of it all was when I wanted to get out to my van and earth. So they had a harness on me to tie me down to my wheelchair because I would try to get out. So it takes an hour trying to untie this thing and then I quietly wheeled down the hall to the doors that led outside and got up to run to everything outside. And then I must have taken one or two steps and then I fell. [♪♪] [The Breakfast Club] You guys, it's been a while since we've all seen each other... [Kelley] The Breakfast Club is a group of 20-somethings that have been going through rehab around the same time. And so we've had different struggles. I got my driver's license back finally, and then I went out and I got my chauffeur's license so now I can cart people around. But they really don't feel too easy riding with me, which I don't understand why. [Amy] I don't know. I don't know what career I have in mind, but preferably something in the management field. [Kelley] Just kind of an opportunity for a group of us to get together and talk about our situations, our feelings and our frustrations, to kind of have a voice. And it's wonderful that they can talk with one another because, like so many illnesses or disabilities, when you have it, you're the only one you know that's ever had that before and you're struggling with this. And it's wonderful to be able to talk with other people who have been there and can offer you some insight, and not just from a clinician that maybe has ideas, but these people have really been through it. And they can say, "Yeah, I struggled with that too, and this worked for me "or you might try that." And it really helps when it comes from their peers. In this situation it takes a very, very long time to feel like you have a voice and you're being heard. [♪♪] [A Little Perspective] [♪♪] This brain was given to me after my injury, and what is so relevant to me and what's amazing is that the brain controls absolutely every area. And when you damage one part of it, it affects everything you do. I did have to deal with severe guilt after the accident, though, because I was the one driving. It wasn't even my young teenage daughter, where usually it's the teenager that has that. I had never had an accident before. This was the first one. I should have paid more attention. Amy and I were talking and visiting in the car. Did I have my eyes off the road? Was I not paying attention like I should? Could I have done something differently? I mean, you go through all the scenarios. But it was an accident that really could not be prevented. [crowd chattering] [male speaker] Four years. Okay, good job. [Kelley] I was finally one of the regular 20-somethings. And then all of a sudden [makes crashing sound] crash comes and it changes my life. And I don't know if there's any rhyme or reason, and I can't change history, so it is what it is. Now I can really drive slow, and it's okay with me if somebody has to pass me. I can just let them go. I don't have any more of that "I need to get there now for no real reason" drive like I used to. I think he had his epiphany, and I think he realizes that he can die. [♪♪] I had a wonderful therapist at the time who knew there was a reason to work hard. She told me that laughter and work go hand in hand. I really was angry with God. But I think it was a good thing. I think God allowed it to happen because my life was going this way and all of a sudden, after my injury, I was going this way. So... The "Why me?" And in my mind there isn't an answer for that. It is what it is. And guess what? You have to deal with it. If you want to live in this life, you have to deal with it. Practice. Even if your teachers will ask you to do homework and people think it's a joke. But homework prepares you to learn. Practicing driving teaches you about how to drive correctly. Don't blow practice off, because without practice you won't know what you're doing. I got my license with, like, two hours of practice. I didn't understand the looking thing and it's because I didn't practice. Not because I thought it was a joke, but because I didn't know how crucial it was. [♪♪] [♪ominous music♪]

The other breakfast club is a group of teens with traumatic brain injury who meet to help each other with their injuries.

Posted on BrainLine November 25, 2009.

The Other Breakfast Club. Courtesy of the National Road Safety Foundation.