Relentless

by Ted W. Baxter

  The other type of therapy was in a group setting that focused on synonyms and definitions. Instead of asking us to name an object or picture—which none of us could remember—the therapist would say, “What are the characteristics of this word? Is it big or small? What shape is it? Or just describe what you think this is.”

  It was a way of getting to the actual definition of words, such as eyeglasses or toaster. We couldn’t remember the name of the object, but we could figure out what it did, how it worked, and what it was used for. In one exercise, I listened to a therapist who was talking to another patient. The therapist had a coffee cup in his hand, and he said, “I want you to describe this. What do you think it is? Is it a circle? Is it tall or small?”

  The patient said, “That’s a drinking container.” He definitely got it, but as a person who has aphasia he could find a better noun in this exercise, like coffee cup.

  This may seem like a small, small task, but for people who have this type of aphasia, this is a great achievement. And for me, it challenged me to explain things as succinctly as I could. That meant, eventually, that I would practice multiple definitions for the same word or item so I could describe it more fluently.

  There were many benefits of doing this exercise. My brain is always on and thinking of different ways to say the same thing, because you don’t know when you will forget a word. And I picked up a few tips, such as how to keep a conversation moving by using different words when I forgot the actual word I wanted to use. Everybody does this, but since I have aphasia, I had to work double time to come up with alternative words.

  Another technique we used at Northwestern was the book club. One of my favorite books was Water for Elephants, a historical novel by Sara Gruen. We had to read a specified number of pages each week and then review them as a group. The therapists would ask us to read a paragraph out loud. I was one of five stroke survivors sitting on one side of a table. Three clinicians from the Northwestern speech program sat on the other side of the table with a list of questions they wanted to ask us. Eventually, I was able to ask them at least two questions every week. That was a switch for the clinicians!

  On Tuesdays and Thursdays, I went to the RIC Aphasia Book Club, where I was reading another book, A Reporter’s Life by Walter Cronkite. The book clubs at Northwestern and RIC kept me busy. This process of reading and understanding a book, trying to summarize the chapters, and saying it aloud was extremely crucial for me. It was an effective therapy technique, and I was glad I had finally joined in. I joined at the right time for me. Putting all the things I had learned so far in cohesive, succinct sentences, without errors, was the goal.

  So, I set up my schedule every week to participate in these groups, which were both quite difficult. I was reading four chapters, in total, per week—two from Water for Elephants and two from A Reporter’s Life. I got through them, but I didn’t necessarily comprehend what I was reading. I wasn’t sure, for example, what Walter Cronkite did on a particular day. I had to reread portions of the book three times to finally get it. But I did the work and stayed current with the group. As time went by, I could see myself making progress.

  For a while, I participated in various book clubs—both leading a book group and participating in various others—and I found there are many benefits to accrue (reading, comprehending, summarizing). Over the next year, while a member of these various book clubs, I read 90 Minutes in Heaven, The Alchemist, In Cold Blood, The Memory Keeper’s Daughter, Left Neglected, The Harbinger, The Monk Who Sold His Ferrari, The Boy in the Suitcase, Kill Me If You Can, Taken, The Uninvited Guest, and my favorite so far, Gang Leader for a Day.

  In addition to joining these book clubs, I decided to start private therapy sessions with Doreen Kelly Izaguirre, which were totally different from the others. I had left her a voice message in October 2005, before Kelly and I went up to visit UMAP. When I came back to Chicago and started working with Doreen, she said she could tell that my speech had gotten much better—significantly better—since leaving her that voice message. It was such a slow progression that I hadn’t been aware of the difference.

  With Doreen, I did unstructured supported conversation, the most common form of speech therapy.

  Doreen

  As a speech pathologist, I take patients at any stage of the game, no matter what level they are working on. It was Ted’s choice to go to UMAP first. He wanted to take advantage of their intensive program.

  I could see Ted’s progression immediately when he reached out again after he got back. He left a voice mail for me before he left for UMAP. Being a therapist, I knew what he was asking in the voice mail, even though his sentences and phrases were broken. Then, when I heard from him again after he came back from UMAP, the change was unbelievable. It was mind-boggling! I wish I had saved the initial voice mail to show his level of progression and as evidence of how determined he was.

  The thing that impressed me most about Ted was that he came into every therapy session with an agenda. He’d say, “Here’s what I want to be able to do. Here’s what’s hard for me. Here’s an example of what I tried to do and couldn’t.”

  We worked on all aspects of language, whether it was word finding or sentence structure. There were many times when we were literally mapping out sentence structure because that was the part of Ted’s language that was impaired. We even did some scripting therapy. He would say—and again, he was saying this through more of an aphasic-style language—“When I’m out socially, I just want to make small talk.” He wanted some prepared things to say about sports, movies, or the weather and then, eventually, current events, which meant he was challenging himself with adding more complex ideas to build richer sentences.

  It’s hard to describe our therapeutic sessions. He would say something, I would write down what he said, we would restructure the sentence and either focus on nouns or focus on verbs, and then we would put those words in sentences.

  He took such ownership of his program. He was always working on speaking better. Before his stroke, he was such a successful, brilliant man, and then to have this happen . . .

  Most people, when learning about aphasia, don’t understand it; they don’t always understand that for patients with aphasia, it’s more of a communication issue. It’s hard to understand that they have their intellectual faculties and know what they want to say, but they don’t have the ability to communicate it.

  But then when there’s that struggle to get out something so simple to someone who doesn’t understand it, they think, Oh, he might be confused. Let me do it for him; let me say it for him. This was so frustrating for Ted, who couldn’t communicate the way he used to.

  He’s a very take-charge guy. He takes on the attitude of I will make this work, and this is how.

  That was another thing that impressed me about Ted from day one—he explored so many different options for therapy early on. He pursued all of these on his own, and many of them he would pay for privately. I think he probably looked at that the way he would invest in any business. His attitude was that he was making an investment, and he was going to direct it, control it, and get the most out of it. And it was fantastic because he brought real-world issues into his therapy sessions, which was great.

  When we talk about aphasia in a patient’s early days after the diagnosis, it’s huge. Everything about your life is the aphasia. The goal is to slowly shrink it, so that life is bigger than the aphasia. The aphasia is a component, sure, but it’s getting to be smaller and smaller. Ted worked so hard at that. He’s still working at it and doing fantastic.

  “What’re you doing?” Kelly asked one evening as I sat at the table with a stack of index cards. “Where’d you get those?”

  “Store,” I answered and went back to the task at hand. My handwriting was rough. I wrote simple conversational sentences, one sentence for each index card, and I didn’t know what would happen, but I wanted to take more control over my speech. I was beginning to formulate a project plan for my reco
very, though I didn’t even realize it at the time.

  The first month after I started writing on the index cards, which then became writing on the computer, my writing got better than my speech did. Then the next month, it switched, and my speech grew by a larger margin. The following month, my handwriting leapfrogged my speech again.

  “It makes sense, Ted. They are interrelated—one affects the other,” Doreen told me in one of our sessions.

  That hadn’t occurred to me. Suddenly, I knew I had to strategize to get the most growth in both areas.

  At the next session, she opened the door to welcome me into her office and noted the book in my hand. “What is that, Ted? A dictionary?”

  “Yes,” I replied.

  I started toting the dictionary around with me wherever I went. When I had a few free moments, like when I was waiting for a therapist, I would take it out and choose five new words to remember. Then I would work on them, over and over again, in my head. Five words every day. As I write this book, I’m still adding two or three words to my vocabulary daily. That’s how I continue to get my speech back.

  All of Column A, All of Column B

  I am restless by nature, so I developed my own rehab program, adding anything I thought would help. There was always a purpose for doing a specific exercise; I needed to know why and how an exercise would benefit me before I did it. I had been worried, after my stroke, that I had lost my gift, but I realized that this was my gift—not accounting or finance but determination and motivation. Working to reach a goal and beating the odds were my gifts, and they worked for me during my recovery as they had in my career.

  In October of 2008, I took an English class that met for three hours twice a week, for eight weeks. I was one of twenty people in the class, and I decided that I would not tell the teacher I had aphasia. He went through the parts of speech: One session was nouns and verbs, another was pronouns, and so on. It was like an English as a second language (ESL) class, only some of the people were just there to study the language. For me, it was a separate, nontherapeutic way to interact with other people while we all learned the same things. I could practice my language, but I could also work on my social skills.

  I liked the challenge of the ESL approach, so I talked to Sherrie Malleis, who ran the Loyola University ESL department in Chicago, and added her as a “therapist” too. She was patient, she listened to what I was trying to convey, and she was excellent at teaching language. She gave me a lot of strategies and tactics to get my thoughts, or a description of a story, “across the table” in conversation.

  When I was in high school, my dad taught me about the importance of getting a job and how much is required of you to attain a great job and the best quality of life. That translates in my hard work in rehab and now in recovery. Changing the metrics a bit. Eventually, I realized the hard work I put in toward being able to speak and write again, socializing, and coming back to the community is paying off. As long as I refine and continue my progress, it becomes second nature. Enjoyment!

  CHAPTER 15

  No More Limits

  In the fall of 2007, Kelly and I found out about an experimental aphasia program at the Veterans Administration (VA) in Orlando, near the University of Central Florida. They offered a four-week program with individual and specialized aphasia therapy. I figured it would be good for me, so I gave it a try. I stayed at the Embassy Suites and walked to the gym at the University of Central Florida every day to get some exercise.

  While I was at the gym each day, I worked with a therapist from the VA for three or four hours. It wasn’t an official part of the aphasia program at UCF, but the therapist worked with me and another guy who had a speech impediment. Every morning, the staff would greet us as we came in.

  “How are you doing?” they would say and wait for us to respond. Then they’d note our responses and compare them to our previous responses to track our progress.

  With one therapist, we played hands-on games, like word searches and go fish, which let the therapist evaluate us as we went through the processes. She then gave us a report on how we did at the end of each session.

  I had never played games before as part of therapy. These sessions consisted of one clinician to two patients, rather than the more common one-on-one or group dynamics, and a different kind of therapeutic approach. The thing was, I couldn’t devote myself to this therapeutic approach. Unlike the other programs I’d been in, I was alone, despite being paired with another patient, because I was the only one in this setting with aphasia. I thought I would get used to it and develop my social and listening skills while building a comradeship with the other patient, but I never did.

  “How was it?” Kelly wanted to know when I got back.

  “No good,” I answered, though that wasn’t entirely true. Every therapy I’ve tried has had some value. They all challenged me in various ways. But I was lonely in Florida. And I did not like that.

  After returning from the program at UCF, I immediately got back into my routine in Chicago: the Aphasia Club, the Book Club, and going to Northwestern University twice a week for therapy. Part of what I did at Northwestern was to participate in experiments that were created by students who were going to the school in Northwestern’s doctorate program. They had to do a certain number of experiments with stroke survivors.

  In one of these experiments, they would show me pictures of people doing an activity and then say the verb tense of whatever it was the people were doing—swim, running, walk, drove, eat, been sleeping. Then, I’d have to repeat the verb, tell what tense it was, and use that verb in a complete sentence. It was hard and frustrating, but it was a great exercise for me at that point in my recovery.

  And that was only one experiment; there were many others. When they discovered that one of these techniques had positive results in stroke survivors with aphasia, they would share it with other aphasia centers who belonged to an aphasia network, such as RIC and San Diego State University.

  Throwing My Own Switch

  Many PhDs that I met during my recovery said that if your stroke affected your right side of your body, as mine did, you should do everything on the left, but that never made any sense to me. I wanted to regain full use and strength of my right side, and I couldn’t do that by always using my left.

  I read The Wall Street Journal every morning. It’s a tough newspaper, and I still didn’t get everything immediately, but I read through it. When I walked to RIC in the city, I would make sure I held my newspaper on my right side. I also started wearing my watch on my right wrist and shaved with my right hand. Eventually, I took it even further.

  One night early in my recovery (about one month after I was released from inpatient RIC), I came home to a wonderful smell in the kitchen, lamb chops. Kelly knew that it was one of my favorite meals, and she was quite happy to see my smile. I sat down, mouth watering at the familiar food, and picked up my fork with my left hand. Then suddenly, my smile faded. My right arm wouldn’t cooperate. I couldn’t pick up my knife with my right hand to enjoy the meal. I couldn’t even feed myself my favorite food.

  I was stubborn and didn’t want to ruin the special meal, so I switched hands, attempting to cut the lamb chops with my left hand. Much like the child who tries to write with the nondominant hand, my efforts were sloppy and awkward. The full weight of the realization that I was handicapped came crashing down on me, and tears blurred my vision. When at last I was able to wipe them away enough to look up, I saw Kelly wiping her own eyes.

  “I’m so sorry, Ted. This was supposed to be special. I didn’t know . . . ,” she said, but I cut her off with a wave of my hand. I wiped harder at my eyes.

  “It’ll get better. It will, Ted. It will get better,” she reassured me. I knew she was right, but it wasn’t going to get better on its own. I had to take charge. And that’s exactly what I did.

  One day not too long after the lamb chop incident, I took a small rope and said to Kelly, “Tie this.”

  “What
are you doing?” she asked as she tied my left hand behind my back.

  “Today, I’ll eat dinner with my right hand, and after that, I’ll use that side of my body until I am ready to go to bed. I’m trying to get better.”

  Once I felt like I was improving, I’d switch to the left side. I began alternating between my left and right side each day. It gave me a different way of firing the neurons in my brain by switching from the right brain to the left brain and back again. I was building new synaptic pathways to replace the ones I’d lost. I talked to some of the PhDs at Northwestern about it, and they said they had never thought about it like that; no one had ever done anything like that before. But I did it for the entire first year of my recovery, and my right side improved. Now, nobody can tell which side of my body was impacted by the stroke.

  It’s all about motivation, mind, and determination. I figured if I really wanted to do something, it was up to me to do it. There was no prescription or set therapy, no panacea that would fix the issues I wanted fixed. All anyone would tell me was, “Wait until later,” or “Oh, you can’t do that,” or “You’re disabled, so deal with it.” I’m glad I didn’t listen to them, and I hope that people who think they can’t make these kinds of changes are reading this. There is hope, and there are ways to change!

  But no one knew what was going on in my head, and the doctors didn’t know what I could and couldn’t take on. They only knew what they were trained to say.

  That’s why I did it. It was my body and my life, and I wanted to be in control. The word no has never been a part of my equation.

  Kelly

  I don’t think I’ve ever met anyone who is as focused and determined as Ted is. I tell people, “You don’t understand—this guy doesn’t procrastinate. He’s very strategic. He’s great with time management. He’s clever. He’s extremely results oriented.”