Relentless

by Ted W. Baxter

  His recommendation held significant weight. I was contacted by one of the trustees and had a meeting with three members of the board to explain what Laguna Art Museum was and what being on the board meant for me. Not long after, I joined the board. This gave me a new and different avenue to learn about art—participating on a nonprofit board, giving my views on different museum-related issues, and socializing with people who shared my appreciation of art. I could get into art-related conversations with people, which would help me become comfortable with art terminology, and I would start having fun.

  This constant conversational practice continued my recovery and withered away my aphasia every day. I had decided that if I picked one or two topics—like contemporary art—and learned about them, got comfortable with those subjects, and could have a deep conversation about them, the aphasia would lose its power in my life. Eventually, I would forget about it. It would no longer be a topic for my everyday conversations. My focus would be the actual topic—contemporary art.

  This is not to say that serving on the board of an art museum in a new town, meeting and socializing with new colleagues, new patrons, and living with aphasia were easy. The members of the board were friendly, cordial, collegial, and serious when dealing with business issues, events, or initiatives. All in all, it was a group of extremely smart, some retired, and working executives from various aspects of their careers, and it was fun to interact with them as a member of the same board. Part of being a member of the board was trying to raise funds, encouraging people to donate, especially those from Orange County. That was one area I couldn’t help with. I didn’t know anybody; I was still new as far as Orange County was concerned.

  Instead, they put me in a subcommittee. When the executive director resigned at Laguna Art Museum, our committee was tasked with hiring the replacement. I researched the resumes for the potential directors selected by the subcommittee. I had to go out and talk to three potentials then go back to the next board meeting and summarize my views and impressions. I had to understand what people were saying—listen and comprehend. The actual job was easy for me, since I had been through this process a million times before in the financial world. But being an art museum trustee in a nonprofit institution was a little new for me, so I had to brush up on the related terms.

  The socialization was a good fit for me, and I served on the board at the museum for three years. I took the initiative to meet as many people as I could. Tim, Peter, and the museum all helped me get out in the world and socialize. Peter introduced me to his girlfriend (who later became his wife). She had had a stroke also, and she too had found a deep love for art. She knew firsthand the frustrations, anxieties, and challenges of having aphasia, especially in a social setting, so we could speak with a level of understanding that others didn’t share. All these relationships led to others, and because of all of that, I knew the relocation to California could work. I could meet new people and build relationships, but I still had questions. What’s my purpose? I had a stroke and I have aphasia, but can I help others? And if yes, then how? I didn’t know if helping people was a viable opportunity for me to pursue.

  That’s how my life in California grew. I was pursuing a different life than I had in New York and Chicago. I was learning new things that I hadn’t been exposed to before. Before my stroke, I never would have done any of these things. There hadn’t been time to appreciate art when I’d been jet-setting. But I loved how life on the West Coast was coming together. I’m doing it on my own, my own terms, I thought in those moments of excitement. Without my wife, without any therapists or psychologists to guide me, I built a new circle of friends and acquaintances. And regarding my recovery—well, that continued without me realizing it.

  CHAPTER 21

  Therapy and Volunteering in Southern California

  When I was still living in Chicago in 2008, I had sat down with Belma Hadziselimovic, the director of aphasia at Northwestern.

  “Suppose I move to Southern California; what do you think about that?” I asked.

  “That would be fine,” she said after a moment.

  “Could I do something like the therapy we do here out there?”

  “Yes. There are programs on the West Coast.”

  “Where?” I asked.

  “San Diego. It’s near where you’re going to live, a little over an hour away. When you go out there next, let me know. I’ll call and let them know you’re coming over to see what they have,” she told me.

  So, I did.

  There was a clinic and research center with a program similar to Northwestern’s called Speech, Language, and Hearing at San Diego State University (SDSU). I started working with them shortly after I moved. Twice a week, I’d spend mornings getting therapy from students or clinicians who were training to be therapists. Each semester, I picked a book, and the clinician and I would read it at the same time. Then, we got into questions and answers about the book. When I got frustrated, I would think back.

  I wouldn’t have been able to read this two years ago. I wouldn’t have understood it as well a year ago, I’d remind myself, to change the frustration into a calm, content state, recalling how well I was progressing.

  I talked to the director at SDSU, and we agreed that I could do specific things with the clinicians. These things included memory tasks and working with tough vocabulary and idioms. The director also asked me to help her evaluate a group of students who practiced their therapy skills with adult stroke survivors. In addition, I did presentations for a number of courses that the students were taking as part of the speech programs.

  Then, in the afternoon, I went to a different division of the speech, stroke, and aphasia area, which focused on aphasia research. I would do different experiments. The research analysts would ask me if I thought that particular exercise or experiment would work with aphasia patients, depending on how long ago they’d experienced their stroke.

  At the same time that I was doing this work with SDSU research team, I had investigated volunteering at University of California, Irvine (UCI). When I called UCI to learn more about volunteering opportunities, I learned that they had a huge program dedicated to just that.

  So, I attended the orientation and got a hands-on look at what would be involved. Afterward, I hung around so I could speak with the director of volunteering. I had questions to ask, questions about stroke, aphasia, neurology, and so on. She didn’t have much time to speak that day, but she did tell me she would contact me later. Nevertheless, I was surprised when the call came through. She wanted to tell me more, because the UCI hospital had a lot to be proud of in the neurology department, including five or six doctors devoted to stroke prevention and treatment. Furthermore, she thought there might be specific volunteer tasks that would appeal to me, given my experiences.

  She was right, and I was frequently at the hospital in UCI in the rooms with recent stroke victims, compiling stroke patient records, participating in stroke recovery groups to share my story, or doing rounds with doctors as they visited the rooms of people newly diagnosed with stroke.

  I was at the UCI hospital when one of the stroke doctors introduced me to Steve Small. When I met him, I found that he was quite familiar to me. He was a world-renowned aphasia expert who had been doing research at the University of Chicago. He had worked with my experiments, evaluations, and research after I had my stroke in Chicago, but at that point, my brain was still fuzzy and my memory capabilities weren’t there. When my stroke doctor from UCI introduced us, Dr. Small said he had heard the name Ted Baxter and knew I’d had a massive stroke. After meeting him, I called Kelly.

  “Yes, I remember him,” she said, surprising me. “You met him at the hospital at the University of Chicago, too, but you probably wouldn’t remember that.” She was right. I had been amazed at my name being recognized as a stroke patient. Once upon a time, I was known in the financial industry as the go-to guy whether I was working at Price Waterhouse Consultants or whether I was working at CSFB or Cita
del. Now, I’m known for something so very different.

  Coincidentally, Dr. Small had moved to California about six months after I did. He had taken a new job in neurology at the hospital at University of California, Irvine, and was building a new facility on neural brain recovery, including programs for stroke survivors. He wanted to pick my brain about strokes, aphasia, and the treatments that were offered in Southern California.

  “Look, you want to join me? We’d love to have you because of your experience with stroke and rehabbing yourself. To be where you are now, compared to where you were after you had a stroke, it’s remarkable. And that’s great for us at University of California, Irvine,” he said.

  He went on. “I’m going to build a neural repair brain facility at UCI. I want you to work with therapists there and try our experiments. Our therapists are like researchers, like SDSU. They develop new methods by giving you written exercises, speech scripts to be read aloud, or selecting visual options on a computer. You will tell us if the experiments will work for stroke survivors.

  “I know all your cadre of therapists in San Diego and Chicago. They probably don’t even know I’m here in California. When you go there next time, tell them that I’m here and that you’re going to help me with this,” he told me.

  And, like that, from what I’d learned through my experience, I was helping stroke doctors and neurologists at UCI and SDSU.

  In May 2011, UCI campus had their annual stroke survivors’ picnic, so I went. I figured it would be a good way to meet new stroke survivors, therapists, and doctors and learn about new health-related institutions. I walked around and met people, since I’d been to the hospital before but not the college campus.

  The picnic allowed for a lot of socialization, and I came across someone who worked for the American Heart and Stroke Association and was responsible for the Western States region of running a golf clinic focused solely on stroke survivors. They usually run an annual golf clinic for stroke survivors in various locations—from Northern and Southern California to Arizona to Las Vegas—and they didn’t have support to run that year’s Orange County clinic. This fact came up during our conversation. Being a stroke survivor and having taken an interest in golf, I wanted to help. I found myself making introductions. I talked to a golf director from a golf club in Fullerton, California, and I told him about the program and asked if he would host the clinic. He agreed. At that moment, it was clear that I had made the right decision in attending that picnic—the golf clinic was able to happen in Orange County.

  As I continued my walk around the picnic, I went over to the St. Jude’s Hospital table and met their aphasia director, Candace Vickers. She couldn’t believe I’d had a stroke.

  “You’re very intelligent with the stuff going on in your brain,” she said at one point, and then introduced me to her husband, Terry, who had also had a stroke. We got to talking, and then she said, “Ted, I run a communication recovery group program every Monday in a church in Fullerton. The church donated the space for students, clinicians, and aphasia-related clients, to give them a place to practice their speech, therapy techniques, and get used to interacting with other people with aphasia in a social setting. It provides the chance for people with aphasia—and caregivers—to converse and to do therapy one-on-one or as a group. This is totally volunteer based and overseen by St. Jude’s Hospital. Why don’t you come and just see? You don’t have to be part of it. Obviously, you’re out of the patient stage, but you could be a volunteer, an advocate for stroke and aphasia. You have a lot of strategies and tips that the other clinicians could learn from. And our clientele would really like you to socialize with them and learn from you in a different way.”

  Again, I had fallen into something wonderful, a relationship with St. Jude’s Communication Recovery Group. There are many benefits that come with the role of volunteer clinician or an aphasia ambassador: I share my views with the other clinicians about their techniques and what they should and shouldn’t do as a client; I work with the aphasia director to help organize and develop the stroke-survivor program; I get to practice my own speech; I help lead various groups of clients with different clinicians during the Monday mornings; and best of all, I go to universities and hospitals to present my story—what I had experienced, how I rehabbed myself, how it changed my life for the better, and what it took to get my life back. I was able to give stroke survivors and caregivers hope. Sometimes, I couldn’t believe how far I’d come.

  So Many Treatment Options!

  “When are you going to write your book?”

  I looked up at the question. It wasn’t the first time I had been asked. The director of the aphasia program in San Diego looked directly at me, making it clear that it was a genuine question.

  “I’ll give it some thought. I’m not really the kind of guy who can just sit in my house, open my computer, and write.” I shrugged. “I’m much better at being active, talking with people.”

  I wanted to make personal connections. I don’t remember what was said next. I only remember thinking, I could be a motivational speaker. I can tell audiences what it is like to experience a massive stroke and walk them through it from A to Z. I’m almost doing that now.

  I knew there was no single answer to recovering from stroke or aphasia, for that matter. No one has the panacea for treating, recovering from, or conquering this. I wanted to tell people, “This is the way I did it. This is what I didn’t do, and this is all the stuff I did. And you know what? You can do things you didn’t think you could ever do again after your stroke. It’s called determination, will, focus, resiliency, and perseverance.” As my thoughts followed this path, it got me thinking about all the things I hadn’t tried.

  I knew if I could have fit the things I didn’t do into my routine, I would have. I didn’t have time to practice singing, for example. When I lived in Chicago, my good friend Barry, who had a stroke similar to mine, went to a teacher who taught Jewish songs, and he asked me to come with him. But I didn’t have the time. My schedule was full already. I chose sports, the gym, getting private therapy, going to RIC in the city, RIC in Northbrook, and Northwestern, and going to English classes. There was no time left for singing lessons.

  I didn’t try the hyperbaric chamber when I was in Chicago, either. A hyperbaric chamber is a large chamber in which the oxygen pressure is above normal for the atmosphere: It allows an individual to breathe in 100 percent pure oxygen. It has been a successful way for individuals to experience relief from decompression sickness, a hazard for scuba diving. It’s also used to treat some medical conditions.

  I had talked to Kelly about it, and we both thought it would be a good thing for me to do. She called my neurologist in Chicago.

  “Ted would like to try the hyperbaric chamber,” she explained. There was a moment of consideration.

  “Let’s see next time he comes in for a checkup visit,” my neurologist responded.

  Before that next meeting, I read an article in a journal about a woman who was a caregiver for her husband, and she started him on the hyperbaric chamber. I was taken aback by the time commitment, especially when I tried to figure out how I would fit it in with what I was already doing. I’d have to be in there five times a week for six to eight weeks so my system got used to breathing that much oxygen. It’s supposed to help recovery in your brain cells.

  I was already feeling hesitant because of what I had read—it was unproven—and when I met with the neurologist, he voiced concerns as well.

  “Ted, I think it might be a bit late in the recovery for this, anyway. There really isn’t any evidence to suggest that it would help in a case like yours, especially so long after the stroke.” He sat for a moment, perhaps expecting me to argue for it. “If you had another seizure in the chamber . . . ,” he started, and shook his head, “I don’t think it is worth the risk.” I agreed.

  I didn’t try yoga or meditation right away, either. It was too much inner focus, which made me uncomfortable in the first few
years after my stroke, so I found different types of exercises. In time, though, my impressions of yoga changed, too. I calmed down after moving to California and starting my new life. Yoga and meditation now helps keep me grounded and my life balanced.

  Part of my reason for communicating with other stroke survivors was to present them with all the possible alternatives that they could consider through their own recovery process. I recognize that although I had opted away from some of the recovery options, others could potentially benefit from them. I had to keep my mind open and give information rather than trying to sway others to take the same approach that I had. Because discovering the best approach that fit my needs was what worked for me, so it could work for others as well.

  CHAPTER 22

  Hello, Positive

  “ I don’t really know what to do with myself,” I said to my therapist in Orange County, not long after the UCI picnic events.

  “It seems to me, Ted, that you have a lot on your plate.” I shrugged. “Yeah, I guess. It just feels like something is missing. There are a lot of things that I am doing right now, but I don’t have a career anymore . . . And I don’t have to work as hard on the recovery process now . . .”

  “Give it some time, Ted. You’ve already done a lot” was the response. But I was getting impatient again. I was somewhat bored. I needed something exciting. I realized I was entering uncharted territory here.

  I came across self-improvement mogul Tony Robbins not long after that conversation with my therapist, so I signed up for his “Unleash the Power Within” seminar in February 2013. It started me on the path to figuring out who I was, who I wanted to become, and what my purpose was.

  “Life is a gift,” Robbins said, “and it offers us the privilege, opportunity, and responsibility to give something back by becoming more.” I was one among six thousand people who attended the event that long weekend, at the Los Angeles Convention Center. I started to realize that by doing more for others, I’d be happier with myself.