From the Spaulding Rehabilitation Hospital Integrative Medicine Project, copyright ©2006. Used with permission. www.spauldingrehab.org
Mindfulness and Brain Injury: The Central Park Jogger's Story
[♪mellow music♪] Now we have a featured speaker who I'm sure many of you remember. I personally remember so well the articles in "The New York Times." Her story sent reverberations through every community, and she was, of course, a very young person at the time on the evening 16 years ago in April Trisha Meili set out for a run in New York's Central Park. And I had never met Trisha before tonight, but I live in New York, and I am struck. I think of her very often as I go through Central Park or think about running in Central Park, and it still makes many of us fearful. It's a real connection with Central Park. She was found near death a few hours later after having been savagely beaten and raped. Fourteen years later, she revealed her identity. For many of you she was The Jogger, and she did not reveal her identity. And from what I understand, one of the reasons that she actually became public was she had a close relationship with Rick Leskowitz who is here somewhere tonight, and she came to speak to us in Boston as an anonymous survivor and for the first time spoke publicly about what had happened to her. And as a result of that experience, she went on to write a book which has now, obviously, been read by many people. Personally, I was quite delighted to meet her, and I was really struck by the one moment in life that can really turn your life around. So I'm absolutely delighted to welcome Trisha Meili, a true inspiration for all of us. [applause] Wow. Thank you for that warm, warm welcome. As Dr. Rosenbloom and Diana said, tonight we want to thank you, but we also want to amaze you. We may shed some tears this evening, but we're also going to witness the power of the human spirit. We will see how Spaulding helps in making that spirit come to life and do more than anyone ever thought possible. In part, Spaulding is able to do this as a result of the support that each of you have so graciously given. When I think about support in all the various forms that it came to me during the last 16 years of my recovery, I realize how vital it was to my recovery-- vital to my ability to be resilient and reclaim my life. Fortunately, I had support from a wonderful family and friends, an employer and spectacular medical care. I didn't directly benefit from the outstanding care that's offered at Spaulding that we've already heard an awful lot about tonight but indirectly I did. And you heard a little bit about that from Diana, and I'm going to tell you a little bit more. A bit on the injury. It was 16 years ago that I went out for a run on a nice spring evening in Central Park, and I was beaten unconscious, raped, bound and left for dead. As a result of the beating to my head, I suffered a traumatic brain injury, leaving me with extensive physical and cognitive dysfunction. My left eye socket had been crushed in, and the force of the blows were so strong that my eyeball exploded into the thin plates of the orbital floor. From those blows I also had several skull fractures, and I guess as a result of that, I lost between 75 and 80 percent of my blood so I nearly bled to death. I was in a state of profound shock, and I was in a deep coma for 12 days. And on something that's called the Glasgow Coma Scale of 15 points that doctors use to measure the level of a coma, I was given 4 points. As a frame of reference, on that scale of 15 points, you get 3 points just for being alive. So I wasn't in good shape. As a result of the brain injury, I have no memory of any of the events from the night of the attack until just about six weeks later. So I don't remember going running or the attack or being raped or most of the time in the acute care hospital. I think of myself as an ordinary person who had something extraordinary happen. And it was extraordinary in two ways. I suffered an extraordinary level of violence, but I also experienced an extraordinary level of human kindness and love. And it's because of that outpouring of kindness and love, that outpouring of support, that I'm able to be with you tonight. Now, when I was first in the hospital, I thankfully had my family and close friends with me through the entire ordeal. People from all around the world sent me cards and letters and even gifts. Children sent poems to me, and some strangers sent healing oil and holy water. And Frank Sinatra sent me 18 roses. [chuckles] That was nice. [laughs] But in all honesty, I'm not sure if I remember it or if I remember being told about it. So the memory can be a funny thing. But I'd like to share with you an example of another kind of support from Spaulding. As I told you, my formal rehabilitation wasn't at Spaulding but actually, a little southwest of here in Connecticut at Gaylord Hospital which also is a good hospital. But something happened at Spaulding that really did change my life. My story had seized the headlines, not only in New York City but around the world. And for a long time--years after the attack--because of all that publicity, I was really hesitant or wasn't sure if I was ready for the uncertainty and the exposure and the risk of going public. But what happened at Spaulding was something that convinced me to share my story, and it happened in the spring of 2001, so four years ago. It was Dr. Rick Leskowitz, who Diana said is here, and he's at table 10, I think. Dr. Leskowitz is a psychiatrist at Spaulding, and he's involved in developing the integrative medicine program at Spaulding. He invited me to speak to a group of clinicians and patients with head injuries and their families and to talk about my injury and my recovery. So I told these 50 or so strangers who I was-- in a quiet way, breaking out of my anonymity. As I prepared for the event, I remember thinking in the months preceding, "Yikes! What am I doing? Can I do this? I have a brain injury." "I don't think I'm supposed to be able to do this, to be speaking in front of people." Let me tell you, Dr. Leskowitz was so supportive of me, and he was just very encouraging on many phone conversations during that time beforehand. And even with all that anxiety that I had, that afternoon at Spaulding was so, so powerful, and it was an event or an experience that I'm never, ever going to forget. The response of the group that was there--the clinicians and those with head injuries and their families--was overwhelmingly encouraging. And at the end, a young man sitting in a wheelchair at the back of the room raised his hand to ask a question. And he told me that he had been in a coma for three and a half months and that doctors had doubted if he was ever going to be able to regain his ability to speak. Well, here he is telling me this and telling me it very clearly. And he asked me if I had ever been in a wheelchair after my coma, and I told him that yes, I had. And then with such intense feeling he said to me, "You give me great hope. It can be done." "I can beat this." His faith was as powerful to me as mine was to him, and he inspired me to say, "Yes. I need to share my story." And so that moment of faith, that sharing at Spaulding really, as Diana said, resulted in my writing a book. And I have to brag a little bit. It is a best seller. [laughs] [applause] What I've learned is if it's a best seller for a week or five years, it's always a best seller. [laughs] And now I'm going out and speaking about my experience. When I began my own rehabilitation back in 1989, I was in a wheelchair and I had severe cognitive dysfunction. And I wondered, "Am I going to be able to walk again?" "Am I going to be able to remember and understand a story I read?" "Am I going to be able to function just like I had?" Well, part of the process of healing for me was learning to accept some new limitations, yet knowing in my heart that some of those limitations were temporary. Healing didn't mean becoming exactly as I was before the brain injury but coming to terms with what I had and what I didn't have and moving forward with my life. For me, it was a process of learning to begin again, a process of learning and growing that never stops. And to me, that is the best part of recovery. What my journey has told me is that with love and support there is hope and that from hope there emerges possibility, no matter how dire the situation. And we can all be a part of that healing process because I feel that deep inside each of us we have a resource to heal or come to terms with whatever our situation is. And other people, through their support, can help to create an environment that unleashes that resource, that power to heal. And sometimes that support requires the skill of doctors and therapists at a hospital like Spaulding, and sometimes that support requires the unique programs for patients and families like the one I participated in at Spaulding. But always, always, support can be given by each and every one of us as loving, caring individuals just as it was given to me. So I encourage you, when you hear of someone who needs help, be it a family member or a friend or a colleague or even a stranger, open your heart and offer whatever kind of support that feels right to you. Send a card, say a prayer, offer a good intention or send that donation. I'm with you tonight as proof that this support does make a difference in helping someone reclaim their life and become a survivor. So thank you very much. [applause] [♪♪] [♪♪] You certainly have been through a lot in the 16 years since the original incident. In your entire rehab process you must have learned a lot of things just by reflecting on your experience. What would you say is the most important thing that you've learned through all of this process? I think the most important for me is really the importance of support. It's very simplistic, I suppose, in one way but how that support in all its varied forms made such a difference to me and that it's so easy for people to extend that support too. It just doesn't have to be for someone who's gone through something traumatic but in dealings every day with other people, and it also makes me feel better too when I am supportive of other people as well. So I think maybe for both those reasons--for the give and take of it-- that providing that support really was so important to me. Has it changed the way that you relate to other people then in terms of your providing support? I was so grateful for all of the support that I had received, and I think that was one of the reasons why I wanted to share my story, to let other people know, number one, to thank them for everything that they had done for me, that it did in fact make a difference. One of the reasons why I wanted to tell my story to write the book was, number one, to thank them for what they had done but let them know that what they had done made a difference. And so part of that was opening myself up, in a way, to the world and to reveal a part of myself in telling my story. I feel the confirmation of that every time I talk about what happened and the lessons that I learned when I feel the feedback. So it benefits me at the same time that, I believe, from what I've seen, it benefits the receiver of my sharing my story. So that's kind of a continuum of the support. How about spirituality? What's your understanding of spirituality, and what role did that play in your rehabilitation process? I think spirituality played a huge role in my healing because part of it is I got such a response from so many people praying for me, thinking about me, and I think the focus of all that prayer and intention had an effect on my recovery. I really believe that. I personally have the feeling that I saw, I'll call it, the god in each of us as people reached out to me and that I experienced that and the effect of that. And along the same lines, I feel that there's a connection to all of us, and I feel the confirmation of that when I'm out speaking because I meet so many people who feel that there's some kind of a bond between us, almost regardless of their experience. But there's something about me and the story that people feel connected with, and I think that's a part of spirituality too. Is there anything that you would like clinicians and therapists who work with brain injured patients to know based on what your experience has been? What would be most important for them to take away from this? First I'd actually like to bow to all of them because the work that they do just is incredible for how it restores people's lives. One thing that I'd like rehab therapists to know is the importance of being there, being fully present with the patient, to be there with them in that moment in spite of all the other distractions and pressures that are on them but how much that relationship means to the patient that you're there with them, that you're with them, you're believing in them because then I think it gives the patient--it gave me a sense that, "You believe in me. I believe in myself." And I think it helped with building confidence. And also part of it too, when you're fully there with the person, they the patient--let's say--is a part of the process. And I think that's very important too; that you're not just treating someone; that you're actually working with someone and that the two of you are a team and you're doing this together. For patients, what would you like to say to brain injury patients as they're at whatever stage of their rehabilitation process they're in? For patients, it's to trust, to trust the therapist that they're working with, to know that they're there because they want to be there, they want to help, they're not there to judge you, and to feel as comfortable as you can with them and to keep pushing. And if things don't go quite as well as you thought, that's okay. That therapist isn't judging you. They want you to do well. And I think it's almost trying to do away with that thought of, "Oh, I've got to be just like I was. I've got to be perfect." No. Forget about that now. Just do what you can and realize that who you're working with, that that person that you're working with, really wants to be there with you and really wants to see you succeed. [♪♪] Thank you. Okay. [♪♪] Any of you who paid attention to the media to any degree in--I think it was 1989-- are aware that in New York City there was a horrific beating of a young female stock broker that just riveted the attention of the nation for weeks and weeks and weeks. It was the media focus at the time. To respect her anonymity, she was known as the Central Park Jogger. After that first few months, I think it sort of receded from people's awareness, partly because New York has a short attention span and partly to respect the confidentiality of her rehabilitation process. Personally, I had not heard anything since until about four years ago when the opportunity arose to host Trisha Meili to come talk at Spaulding as a first step in finding her voice and speaking to public audiences about her experience. That went quite well, and she has progressed, I guess you could say, leaps and bounds in terms of finding her voice because now she's become a powerful spokesperson for increasing public awareness about traumatic brain injury. And just serving as an inspiration to the very fact that she is as alive and as present and as vibrant as she is is as important as the specific words of her message. So without any further ado, I introduce Trisha Meili. [applause] Thank you, Dr. Leskowitz, for that wonderful introduction. It just feels so good to be back here at Spaulding and actually in the very same room. I mean, this was the same room that I was in four years ago in 2001. What happened that day really did change my life. I don't know if any of you, aside from Dr. Leskowitz and my husband who is here, was there that day. Anyone else there? Oh! We have a few. Okay, good. Thank you and welcome back. I was also wondering how many of you are staff from Spaulding. So a large group. And how about those who are head injury survivors? Welcome and yay! Thanks. And family members too and wonderful supporters that you are. I'm so glad that you are here today. And what I'm going to do is give you a brain injury survivor's perspective on care, hope and healing. What I'd like to do first, though, is an exercise to bring us all together. I'm going to do a breathing exercise. I imagine it's been a busy morning for everybody for one reason or another, so I want to do a breathing exercise to calm, center and ground us. It's something that I've used during my recovery, and that's one of the reasons why I'd like to share it with you. What I'd actually ask first is that for any of you that have cell phones or pagers if you could put them on vibrate or turn them off. What I'm going to do is I'm going to ring these bells and then ask you to follow your in breath and your out breath, the rising and the falling of your own breath. And then I'll ring the bells again. So maybe we can sit up and uncross our arms and legs. If it's comfortable for you, close your eyes or lower your gaze. [bells ring] [bells ring] As you breathe in, feel the air passing through your nostrils, down your chest and into your diaphragm or belly. On your out breath, feel your diaphragm relax as the air passes up through your chest and out your nostrils. Breathing in, I calm my body. Breathing out, I smile to my body. Breathing in, I am a mountain. Breathing out, I am solid. Breathing in, I am a flower. Breathing out, I am refreshed. Breathing in, I am still water. Breathing out, I am reflecting truth. Breathing in, I am alive. Breathing out, I smile to myself. Breathing in... breathing out. Breathing in... breathing out. [bells ring] Thank you. And I hope you all feel a bit more relaxed now. I ask you just to hold on to that feeling, that feeling of calmness and openness because I think it's nice to know that we can access that feeling, that calmness and that openness, so very easily whenever we want and especially during stressful times. And I know that all of our lives are stressful. This doesn't eliminate the stress, but when we're calm we can face whatever the situation is that's in front of us with a more open mind. And I guarantee you that the results are better. This afternoon I'd like to share with you stories from my recovery that illustrate the art or what I call the heart of healing. I'm going to talk about three phases of my experience with a brain injury: First, my initial recovery at the acute care hospital in New York City; Second, my more formal rehabilitation at Gaylord Hospital in Connecticut; And then third, living with traumatic brain injury. Let me tell you about the injury, the horrible event that started me on this journey. As a result of the severe beating, I suffered a traumatic brain injury, leaving me with extensive physical and cognitive dysfunction. As a result of the brain injury, I have absolutely no memory of any of the events from the night of the attack until just about six weeks later. So I don't remember going running, the attack, being raped or most of the time in the acute care hospital in New York City, Metropolitan. Given this horrendous condition that I was in, I want to start by sharing with you experiences from Metropolitan, from the acute care hospital. When I was first there, thankfully, my family and friends were with me through the entire ordeal. What I'd like to do is read a passage from the book that talks about the effect of all of this on me. "As for the cards, letters, phone messages and presents, "my family read and described them to me even when I was comatose." "Pat Babb, one of my nurses, when she held me in her arms, "whispered of the support and told me of the gifts from around the world "sent to comfort me and help me get better." "Did I subliminally understand their words and gain strength "from that unconscious knowledge?" "I'm sure of it, just as I'm convinced that the cards and letters I eventually could read "and understand were a vital factor in my rehabilitation." "Now, of course, no recovery was possible without the enormous skill of my doctors." "But was there more?" "Did I have thousands of friends working on my behalf?" "And I was hearing something else as well from the letters and cards: "that I shouldn't be ashamed." "A common reaction among rape survivors is self-blame." "'It's somehow my fault,' the survivor imagines." "And the internalization of that belief leads to shame, self-doubt and silence." "Some survivors feel they must hide that they were raped, "so the attacks go unreported." "Secrecy was impossible for me. The whole world knew I had been raped." "But to me this was a benefit." "'You shouldn't feel ashamed,' the messages were saying." "'We're ashamed at how you were treated.'" "People didn't ostracize me because I'd been raped." "Rather, they opened their hearts to me." I want to show you one of those cards. And it's a big one too. This came from an elementary school in The Bronx. The students made it. And it says on the front, "Get Well Soon." And then inside, they all signed it. And so it says, "Please get well soon, from the children at PS 27, "Public School 27 in The Bronx." One says, "You're in our thoughts and prayers." I just can't tell you how important it was for me to get this kind of message and these prayers, because all of the messages that I was getting were confirmation that I wasn't alone, that I had done nothing wrong, or that I wasn't to blame. Another message that I was getting even while I was in a coma was that I was in charge and that I was an integral part of the recovery process. I want to tell you something that Pat Babb, the one nurse, told me. And this is several years after I was in her care at Metropolitan. I want you to imagine that Pat is this very strong woman from Trinidad, and she used to hold me in her arms when I became agitated to calm me down. And it did work. And I wish I could mimic her beautiful West Indian accent, but the brain injury didn't give me the ability to mimic people, so you're just going to have to imagine it as I tell you what she told me. I don't want anybody to take offense at this in the room. She said to me that one of the things that bothered her was when physicians would come into my room and talk about my condition over my bed. She thought they should have moved to a conference room because she felt that I would hear them. She said to me, "You may not have been able to talk, "but there was nothing wrong with your ears." "And besides," she said, "what's the point of saying, 'She can't' or 'She'll never' "or 'She won't?'" She felt that I was going to believe them. So as soon as the physicians would leave, she'd come right up to the bed and say to me, "Don't pay them any mind." "What do they know?" [laughter] "You're a hero. You're a trouper." And when I did begin to speak, she'd ask me, "Who's the captain of this ship?" And I'd say, "I am." And she'd say, "You're absolutely right. You're the captain here." "Nobody else is my boss. You can do anything you want." So she was quite a powerful influence. But my life had been devastated, and, in spite of all this wonderful support, I do remember a really trying--it's more than trying time-- but an example of something that happened while I was at Metropolitan that really scared me and when I realized that something was very wrong. It was about six weeks after the attack, and so that's when I'm starting to remember things on a day-to-day basis, I guess. There was a woman in the room asking questions, and she was a neuropsychologist. I didn't know that at the time, and she had been there many times asking me questions because that's what neuropsychologists do. Are there any neuropsychologists in the room? Uh-oh! [laughs] Well, I don't remember those other days, but this afternoon I remember very vividly. She asked me to draw the face of a clock, so with great effort and intensity, because I had lost control of the use of my hands, I tried as best as I could to draw a circle. And then I put the 12 on the top and the 6 on the bottom and a 3 to the right and a 9 to the left. And then I tried to space the numbers as evenly as I could between them. I looked at it and I thought, "It's no masterpiece," but I felt pretty proud of what I had done. Then the real test came. She asked me to draw two o'clock, and I just froze. I could not, for the life of me, remember which hand was longer: the hour hand or the minute hand. And I just felt so ashamed. I thought, "I can't tell her that I don't know, that I don't remember." So I did come up with a solution. I thought, "If I draw the hands the same size, she'll never know [laughter] "how confused I am." Well, I did see a hospital report years later of her analysis of that afternoon, and the report said that I had misplaced the hands on the clock. So my ruse didn't work. So I was scared. Everything had been taken away from me. I couldn't walk, I couldn't speak or think clearly, I couldn't even tell time. But I was engulfed in this envelope of support that followed me on to the second phase of my recovery and rehabilitation at Gaylord Hospital in Connecticut. My experience at Gaylord is the second phase that I want to share with you. It's a bit different than the acute care phase because I remember most of it. I was at Gaylord for a little over five months during the summer and fall of 1989. And during those five months, actually as both an inpatient and an outpatient, I gradually regained some of what had been taken away. One of the most memorable mornings there at Gaylord was when I went running again for the first time after the attack. About three weeks or so after I started to walk on my own without the use of a wheelchair, the head of the physical therapy department, whose name is Nelson Carvalho, asked me if I wanted to join a group of people who got together to run. When I think of it in hindsight, I realize that he and my physical therapist knew just how much to push me. There was a chapter of something called the Achilles Track Club that met at Gaylord on Saturday mornings. Achilles is a worldwide organization that encourages people with all kinds of disabilities to participate in running. I wasn't sure at first if I was going to take Nelson up on his invitation, but I was comfortable with him, I trusted him, and I figured, "You know what? If he's there, then it's going to be okay." So one morning I decided to join him. I remember there were four or five others of us there that morning. There was one man in a wheelchair, and there were a couple of guys on crutches, and there was one young boy with spina bifida. And I thought, "You know, if they can do this with their disabilities, then so can I." The track--and I put track in quotations because it was a quarter mile loop right through a parking lot up at the hospital. But it worked. So on that hot--and I remember this vividly; it was a hot Saturday morning in August of 1989--Nelson and I started out. And you can imagine, just a few weeks after I started to walk on my own, I was definitely a bit wobbly. But it felt so good. I felt like I had conquered the world. And it filled me with such hope. I was taking something back. Now, four months earlier, my normal Saturday morning run was six or seven miles. And here I was struggling to complete a quarter of a mile without toppling over. But that didn't matter. What mattered was what I was doing that morning. I felt proud of what I could do, not comparing myself to what I used to be able to do. As Nelson and I approached the end of the course, my exhausted body saw what looked like Mount Everest in front of me. It's not quite that steep, but it looked like a big hill. Nelson saw that I was getting even more unstable, so he grabbed on to my shoulder and we finished the course together. What I've seen in myself and in other people, because I've stayed very involved in Achilles, is that the confidence gained in reaching a physical goal can be transferred to other accomplishments in aspects of rehabilitation be it in school or at work or in relationships. And it's fun. For me, exercise was a wonderful self-esteem booster. And there is lots of current research on how exercise improves cognitive ability for all of us. It was just a couple weeks ago in the "Wall Street Journal," this article that exercise helps everybody with cognitive function. And there has been some research, though not enough, on the benefits of exercise for those with traumatic brain injury and how beneficial it is and that it is a tremendous motivator and self-esteem booster. [inaudible audience member comment] No, no. [laughs] Another example that I also remember very well from Gaylord had to do with occupational therapy. An organization that was so important to me during my recovery was my employer at the time, the Wall Street investment banking firm, Salomon Brothers. They reached out to me in a way that really did make such a difference. And I've come to learn that one of the most difficult aspects for survivors of trauma, and especially brain injury like I had, is returning to work. The stress of not knowing if you're going to have a job or the anxiety over regaining lost skills can often hamper the healing. I was so fortunate that Salomon stood by me from the very beginning, and they let me know in a number of ways that there was a place for me and that I was wanted and welcome back. I'd like to give you an example of something that happened while I was up at Gaylord. As I said, I was there for about five months. After about two and a half months, I had progressed enough to be transferred from the hospital proper to their transitional living center where I was going to regain skills necessary for independent living like cooking and cleaning and taking care of myself without the constant supervision at the hospital. This is basic stuff. Even though I was 29 at the time and I had two graduate degrees, I was going through a second childhood. The center is very similar to a home, with bedrooms for patients and a large living room and dining room and kitchen. Salomon set up an entire office cubicle in my bedroom that took up half the space, and it came complete with a desk and a telephone and a filing cabinet and a computer and a printer and even something called a Quotron, which 16 years ago was the monitor that tracked the stock and bond markets. It gave me a sense that I was back at work. And Salomon even supplied a small sign with the company's logo on it that said, "Connecticut Branch" [laughter] and they attached that with velcro to the cubicle panel. I brought the sign because it means to much to me. It's probably a little too small for you in the back, but up top is the Salomon logo. Salomon is no more because they were bought up by one or two companies along the way. Salomon at the time had offices in New York and San Francisco and Tokyo and London. But it was me who was their Connecticut branch. [laughter] This really provided me with the security of knowing that I had a place to go back to, a step in returning to the normalcy of life. And so often, I think especially these days, we hear of large companies being all about money, and I think this is a wonderful example of a company really responding from the heart. They can and did do both. They gave me hope. After I left Gaylord, I started the third phase of my experience with traumatic brain injury. I returned to New York City, and I started to work again at Salomon Brothers. And being out of the hospital environment on one level gave me a sense that I was very normal, that I was able to carry myself as someone who hadn't gone through this horrific experience. But let me tell you, it was the beginning of the most challenging phase of my experience with brain injury--living with traumatic brain injury. Back then, I remember hearing that those with brain injuries typically will see improvements for a year, maybe two, and then plateau. My experience and more current research in the neuroplasticity of the brain says that this isn't so. I kept seeing small improvements, and those improvements kept me really pushing-- pushing to the edge of what I thought was possible. And that resulted in additional improvements. And the best part about it is that 16 years later I continue to see change. So for me, neuroplasticity is a wonderful thing. [chuckles] As I gained or regained many of these improvements over many years, I became more and more confident in what I could do as I learned to live inside this new body and new mind. And some of the steps were very small, like maybe standing up on my own without thinking about it, but the culmination of many small steps led to a very bold step in the spring of 2001 right here at Spaulding. At the invitation of Dr. Leskowitz, I spoke in public about my injury and recovery to a group of clinicians and people with head injuries and their families. I told these 50 or so strangers who I was-- in a quiet way, breaking out of my anonymity. And I also gave the talk with Dr. Jon Kabat-Zinn, who is an internationally recognized and respected trailblazer in the field of the mind-body connection to health and healing. As I was preparing for this event, in the months before, I remember thinking to myself, "What am I doing?" "Can I do this? I have a head injury. Can I stand in front of all these people?" But I'll tell you, I had many conversations with Dr. Leskowitz, and he was so supportive and encouraging on those telephone conversations. Even with all my anxiety, I want to tell you just how important that afternoon at Spaulding was, and it was an experience that I'm never going to forget. The response from the audience--from the clinicians and those with brain injuries and their families--was overwhelmingly supportive. At the end, a young man--and he is here today and he was sitting in a way similar to how he is right now in the back of the room, so you'd have to be over there [laughs], but that's okay. You can stay. You can stay. Joseph, right? Or Joe? >>[off camera speaker] Jedi. Jedi. Okay. See, he's confusing me because he goes by a lot of names. You raised your hand to ask a question, and you said to me, "I was in a coma for three and a half months, "and doctors wondered if I'd ever regain my ability to communicate." And here he was telling me this, and I could very easily understand him. Jedi then asked me if I had ever been in a wheelchair after my coma, and I told him that yes, I had been. And then with such great intensity, you said to me, "You give me great hope. It can be done. I can beat this." It can be done. I will do it. You know, your faith inspired me as much as mine did you, and you made me continue to push to my edges to share my story. And that afternoon, that interchange between us really made a huge difference to me. And since then, I did write a book about my recovery, and now I am going around and speaking about my experience. So I thank you very much for what you did for me. >>[Jedi] I thank you very much. Thank you. >>[off camera female speaker] We're glad you're here. [applause] Thank you. Do I get a check in the mail? [laughter] He's thinking. He is really thinking. [laughter] The final and ongoing experience that I want to share with you of living with traumatic brain injury is learning to accept myself post injury as I am. One of the most difficult consequences of the attack for me has been coming to terms with the deficits that I suffered as a result of the brain injury. I still have lingering physical deficits such as no sense of smell or some double vision or issues with balance, which just happened right there. But the hardest deficits for me to accept were the cognitive ones. I come from a family that really valued education and intellect, and I was proud of my academic achievements. While I was growing up as a child, there were many messages, both spoken and unspoken, that smart was good. So could I still meet the standard that was ingrained in me? In the early days after the attack, doctors weren't sure if I'd be able to regain any of my cognitive function. And fortunately, I have made great progress and the deficits are subtle. But I always doubted my capabilities and my abilities, especially with assignments, wondering if I should be able to do them faster or better or in a more complete way. It brought up old concerns. Would people take me seriously? Would they listen to me? So the brain injury made me face this old challenge of self-doubt and multiplied it by about a million times. I realized I needed to face this aspect of my healing, this dragon. Well, I had taken several of those wonderful neuropsych exams, the battery of tests that measures every level of your cognitive ability. I had taken several of them at Gaylord, and I even came back a year after I left in 1990 to take another one. The results were okay and I was functioning well, but that test haunted me and, I think, for understandable reasons. Who of us wants to quantify lost intellectual capacity? I had been told that I didn't have to repeat the test if I didn't want to, but I thought about that exam and, I think, at a level even below my consciousness. So I'd like to read another short passage in the book that talks about finally facing that fear. And again, this was in the spring of 2001, so it was a powerful spring. "My work with John Kabat-Zinn, the strength of my marriage to Jim--" he's a wonderful man in the back of the room-- "and my belief that I had at last found the road I would follow--" in part, thanks to Jedi-- "gave me the courage to face the question that I had run from at Salomon "and The Bridge Fund--"another place that I had worked after Salomon Brothers. "How bad was the damage the attack had wrought?" "I need to quiet doubt and face the unknown." "I made another appointment at Gaylord for a neurological evaluation." "The results showed nothing dramatic, nor did I expect to find out anything dire." "And also, as I suspected, I had made gains in such areas as attention span, "recall and cognitive ability in the intervening years." "But it will always take me longer to process information than I once could." "I don't pick up on complicated narratives quickly." "Even 'The West Wing' can be hard for me to follow." "When too much is going on, my ability to concentrate and prioritize is affected." "Mentally, I will never be the same as I was before the attack." "To acknowledge this to myself is, to say the least, not a great feeling, "though in another way it gives me peace." "I accept it. I can live with it." "It's a giant step in my healing." "It is part of the woman I've become, and most days I like that woman." [applause] When I came to rehabilitation in a wheelchair with severe cognitive dysfunction, I wondered, "Am I going to be able to walk again?" "Am I going to be able to understand and remember a story I read?" "Am I going to be able to function as I did?" Well, part of the healing process for me was learning to accept some new limitations, yet know in my heart that some of those limitations were temporary. Healing didn't mean becoming exactly the same as I was before the brain injury but coming to terms with what I had and what I didn't have and moving forward with my life. For me, it was a process of learning to begin again. What my journey has taught me is that the process of recovery is a function of science, but it is also a function of an art. You may wonder, "What's the art in that?" It's the art of motivating a person to push--push to the edges of what's possible yet at the same time know not to push too hard and risk discouraging the person. It's the art of seeing people like me at our absolute worst, our most vulnerable, yet developing a relationship of absolute trust. And I think trust is so very, very important in the healing process. Your support, your care, your trust helps to create an environment that unleashes a resource that we all have deep inside to heal or come to terms with whatever our situation is, because with support and love there is hope. And from hope there emerges possibility, no matter how dire the situation. And that to me is what keeps life moving forward. Many of you in the room today meld these two aspects of recovery, of healing-- the art and the science--to nurture the possibility of the human spirit. And I stand before you today as proof really, that this support, this care, this trust does make a difference in healing, in helping someone reclaim their life. So thank you very much for what you do and for inviting me back. [applause] I'm Joan. I'm the chaplain here. [Meili] Oh. And was I aware? Am I aware now? Were you aware at the time or now that spirituality played a part in your recovery? I'd say that I'm aware now, but I wasn't aware then. Looking back on the recovery and not that long after, either-- after I got out of Gaylord--I realized how fortunate I was and how far I had come, really so relatively quickly and, for the most part, how good I felt about myself and pretty healthy and such. I still had a ways to go, but I realized that there was more behind my recovery than just good medicine, and I started to explore that. Trisha, I'd just like to say I consider you an excellent friend. I've read your book twice. I read it for inspiration and to see that I'm not the only one who has problems. And I just consider you a great friend, and you're a great teacher of not giving up. What I've heard today tells me again that you didn't give up when you were in a coma and a wheelchair, and it gives me a chance. I can. Anybody else want to follow me? [laughter] I'm a tough act to follow. [off camera female speaker] Hi, my name is Mel. My brother is a brain injury survivor. In your book you wrote about staying in the moment during your rehabilitation process and that you instinctively had that ability to do that, and I wonder if you could elaborate on that a little bit. Sure, yes. Thank you for asking that. I had never heard--I don't think--that phrase, "the present moment" or "being in the moment" before the attack. As I was starting to think more and more about the recovery and how is this possible, how was I able to move through this and make the kind of adjustments and see the improvements that I did, I thought to myself, "You know, maybe in some ways there was--oh, my God-- "a benefit to the brain injury," because I think it forced me, without my knowing it or my intention anyway, to focus on what was right in front of me and not get all caught up in either what had happened or worrying tremendously about the future but focusing on, as I said, what was right in front of me. And resentment about the attack didn't grab hold of me to stop my healing. And in some ways I'm amazed at it still, but I didn't seem to have an anxiety about the future because I felt the support from my family and my employer and such. So I seemed to look at the reality that was mine, which wasn't good at the time, but I worked as hard as I could to make the reality as good as it could be, like right there, and I didn't wake up in the morning and think about this, "Oh, this is what I have to do." But my body just seemed to know that this is what I needed to do to take those steps to move forward. And now when there's more to think about and more to worry about, I'll say, "Stop. Ring those bells. Do that meditation." "Don't get all caught up in anxiety over, 'There's too much going on.'" "'How am I going to go forward?'" Remembering those times when I was back at the rehab hospital and just focusing on what was right in front of me, that got me through. [male speaker] I just wanted to let everybody know that Trisha Meili basically got my whole life started over again back in 2003 because I had a massive head injury back in 1995, and I basically sat at home doing absolutely nothing. I saw her on TV with Katie Couric, and she on TV said that what happened to her, she just got up and did something about it. And she got me so motivated from that that I decided to do something, and I ended up being a cook at a survival center for homeless people. Now I'm doing that and getting a part-time job at the University of Massachusetts in Amherst, and I owe her all of that. Thank you very much. But no. I mean, it's you too. It's you. But thank you. [male speaker] I really appreciate everything. Thank you very much, Trisha. And I guess part of it is for the clinicians, when you see all these wonderful stories of how far people have come, I think it's just a reinforcement that what you do is so important. And oftentimes, now because of shorter lengths of stay, you're not going to see the full recovery. But know that you're playing such an important role in the process because I think, as we know, it just takes a lot of time. Hi. I'm so thrilled because I heard your story a long time ago, and I never thought I would hear anything again. I work with Joe, and I went through my own experience, not with brain injury but I'm a breast cancer survivor. I still kept working. And I think when you reach out to help others, it helps kind of make your problem maybe seem a little bit smaller. Part of that, when you're just saying reaching out to other people, gave you something. That's something that actually I remember John Kabat-Zinn, at least to me, talking about: the giving and the receiving that happens that I think is part of the spiritual aspect of it; that there's something there that's both ways. Oftentimes I'll hear from volunteers in the Achilles Track Club, they'll say, "I get so much more out of it than the person that I'm helping with the disability." Well, you're never going to know it, but it's just to say that as the giver, you're getting so much too. [♪♪] Okay. Thank you. [applause] [♪♪] [♪♪]
Posted on BrainLine February 2, 2010.