Relentless

by Ted W. Baxter

  People will say, “Yeah, I think I know somebody like that.”

  And I think, No, not like Ted. He got frustrated during his recovery, but he never got angry. He wasn’t a quitter. He will find a way to recover.

  “Do you ever wonder why this happened to you?” I’d asked him.

  “I can’t think about that; I’ve just got to move forward,” he would answer.

  Every night at dinner, we would talk about the stroke—not necessarily the events of the stroke, but the rehab. The speech therapy, the physical therapy, what happened with it. That was the focal point of our conversations.

  “I’m sad, aren’t you?” I would ask him.

  He would say—not as fluidly as I’m putting it now, but he’d make me understand—“I can’t be sad. I can’t let myself get to that point. It can’t get me anywhere.”

  I guess that was his way of coping so he could keep moving forward. In a way, he was sad and somewhat depressed, but overall, many people who have brain injuries, like a stroke or a traumatic brain injury, have depression issues. He didn’t. He had down days where he was a little blue, but that’s normal; we all have those. But he did not go through any major depression like a lot of stroke survivors do.

  Remarkable? Yeah. Ted’s personality never changed, thank God. He’s just as driven as he always was.

  No Fun in Arizona

  “Let’s try to use our timeshare at the resort in Scottsdale or we’re going to lose it,” Kelly said to me one morning. “It’d be fun to get away.”

  “Okay,” I replied.

  “Okay? You’re okay with me scheduling it?”

  “Yes,” I said.

  “All right,” she said with a smile. “I’ll call today.”

  We took an early flight. I was extremely tired, and it’s a long stretch from the airport terminal to the gate.

  “Do you want me to get someone to help us? Maybe one of those carts?” Kelly asked.

  I said no quite emphatically. I wanted to walk through the airport. I always walked. I had a disabled placard for my car in Chicago, but I never used it. Still, by the time we got to the gate, I was exhausted.

  “Are you okay?” Kelly asked me.

  “Yes,” I answered her. She would ask several more times before we touched down in Scottsdale.

  “Are you sure that you’re okay?”

  “Yes.”

  “But, you’re limping, Ted,” Kelly answered the final time as we made our way out of the airport.

  The next morning at the hotel, the kind surrounded by golf courses, I woke up bright and early, but Kelly wanted to sleep in.

  “Go to sleep, Ted. Get some rest,” she muttered and then rolled over.

  “Can’t sleep. Need coffee,” I said and then started for the lobby. It was about seven a.m. when I left our room, which was like a casita.

  Walking down the path, on my way to the front desk, I spotted a gym in our hotel. No one was in there that early, so I decided to exercise for forty-five minutes. I didn’t have a water bottle, but they had a fountain with little cups, so I was able to have a little water. Then, I continued my walk.

  I found the front desk and asked, “Coffee?”

  “No. I’m sorry,” the receptionist answered. “There’s a coffee maker in your room though, sir.” She gave me an apologetic smile, and I walked away.

  There was a spread of breakfast foods being set out for a conference. I saw a banana and took it as I walked by. I was sorry to see they were still grinding the coffee, so I opened the door to take the path back around the outdoor pool and toward my room.

  That’s when my body froze. My face locked; I couldn’t move my jaw. I fell down on the ground, unconscious. It felt like I was only out for one or two minutes, but a couple of people who saw me said that I was out for ten minutes. I’d had a second seizure. Somebody from the hotel recognized me from when we checked in the day before, so she called Kelly, who rushed down to the hotel lobby to find me on the ground.

  Déjà vu! Paramedics, gurney, ambulance, emergency room! I was only in the emergency room for the day—I didn’t have to stay overnight—but I knew, and Kelly knew, that this would be a major roadblock in my recovery progression. Once again, the seizure had affected my speech.

  We were in Arizona for a week, but I couldn’t have a good time because all I could think about was how to get my speech back. There was one upside, though—I had brought my flash cards along. I had a full set, from kindergarten through eighth grade, on a wide array of topics. Whenever Kelly drove us somewhere on that trip, I would ask her questions from the cards, like, “Who was Magellan?”

  “No, I don’t know that,” she’d say.

  I’d say, “I’m trying to connect questions and answers. This is the question. The answer is on the back.” And I’d flip it over and read: “A Portuguese explorer who led the first expedition that sailed around the earth.” Of course, I wouldn’t remember all of that, but I would be quite pleased if I remembered he was an explorer.

  Then, I’d go to the next one. After about an hour, I’d go back through the flash cards to see what I could remember. I found I couldn’t recall any of them. More frustration.

  Now, put yourself in Kelly’s shoes: I couldn’t talk. I didn’t know much about Arizona before my stroke, and I was too preoccupied with rehabbing myself to focus on vacation planning, so Kelly had to do all of it.

  She found a Native American reservation near Tucson for us to visit. We took a drive, two hours there and two hours back. That’s when I really got into the flash cards.

  “What animal eats meat? A lion or a rabbit?” I’d ask, and then, ignoring her answer, I’d read from the back of the card. “Lion.”

  “What sport did Michael Jordan play?” I’d ask. Then, I’d read the answer: “Basketball.”

  And so on. This went on for the first hour or so of our drive. It often took me several attempts to read the questions without errors. To Kelly’s credit, she didn’t get pissed, but she got more and more annoyed.

  I included the flash cards in my weekly routine when we returned home from our vacation. I kept pushing myself harder. I started with five different cards every day and then jumped to ten. I had to rebuild my memory. I went from second- to third-grade vocabulary during that trip. Kelly was impressed with the determination and grit that I had (and still have) to go through those flash cards, always taking baby steps.

  “I think I should ask the resort golf pro to see if he can help you learn to play,” Kelly told me after I had had a little time to recover from the seizure. We were still in Scottsdale and seated right on a beautiful golf course.

  I decided to follow her advice.

  “Okay, Ted,” the golf pro addressed me. “Let’s see what you know.” He placed a ball on the tee and handed me a club. I stepped up, lined up correctly, but everything else felt awkward. I could grip the club, pull it back a little, and move it forward through the ball, but the ball just dribbled off the tee. I didn’t have any power; my legs and hips didn’t move. I could walk, but I couldn’t move my legs while trying to hit the ball. “That’s okay. That’s okay,” he reassured me.

  That’s pathetic, I thought.

  “You just have to rotate your hips at the waist,” he said and showed me the motion, but I couldn’t move my waist. While I was trying to figure out the clubs, the pro told Kelly I was like a first grader, but it would come. First comes the coordination.

  This was one of those times I thought about giving up. I thought golf wouldn’t work for me. I knew how to swing the club; I had been a baseball player all my life—I knew how to swing a bat. Now, after having a stroke, I couldn’t do it.

  I can’t do this. What if the doctors are right? I’ll never be able to play sports again. What about retirement, I thought in a panic. I’ll be bored to insanity. I have to be able to do something—golf, tennis, boating . . . something. My mind raced. I’ve got to choose one now, so I can do it later, when I retire.

  If I tried to d
o all three, at that point, I’d do a shit job at all of them.

  It’s got to be golf. I like golf. I was good at hitting the ball before. I can be good again. To hell with the doctors. I’ll prove them wrong.

  I decided I was through with Scottsdale, but I would play golf eventually. I would get better to prove to myself that there are things I can do, by focusing—stroke or no stroke.

  Today, I can usually hit the ball 270 yards using my driver.

  CHAPTER 16

  Taking Charge Again

  When we got back to Chicago from our vacation of sorts in Scottsdale, I returned to my regular routine: RIC in the city on Mondays and Wednesdays and Northwestern on Tuesdays and Thursdays. I worked out. I went for acupuncture. Once a week, I saw Sherrie for English as a Second Language at Loyola. I walked my dog. Once a week, I saw Doreen, my therapist. And, I saw a psychologist twice a week to help keep an even-keel attitude.

  As a stroke survivor, there is a lot to contend with—the physical side, the mental aspects, the emotional effects of recovery, and even the way others interact with you. All of this is difficult to handle, which is why it is highly recommended that a psychiatrist or psychologist play a part in the rehabilitation.

  “Ted, I found a psychiatrist for you. He works at RIC, so it’ll be convenient,” Kelly said while folding laundry one afternoon not too long after we’d returned from Scottsdale.

  “Oh?” I asked, trying not to let the frustration ooze through.

  “Yeah. I’ll make an appointment for you,” she said.

  I didn’t respond. I was too annoyed.

  The RIC psychiatrist that Kelly found knew what had happened to me. But I didn’t like Kelly saying that I should use this particular person. I’m too independent.

  I’ll make the decisions here. I don’t like him. I’ll decide when and who should be my psychiatrist, I thought.

  Kelly didn’t think I’d ever pick up the telephone to call a psychologist on my own. I waited two months or so, and then I did pick up the phone. I found a name by doing some research on my own: Dr. Leigh Chethik. He practiced private therapy three days a week, and the other two days he worked at RIC in the hospital, so it was a good fit. He knew about stroke and aphasia. He was perfect. When I first started seeing Dr. Chethik, he had trouble understanding me, but as time went by, that got much better.

  Sometime in 2007 or 2008, I had dinner with my previous boss from Citadel. He wanted to see how I was doing and what activities I was involved in. By then, my comprehension wasn’t 100 percent, but there had been significant improvement. I was talking in phrases and short colloquial sentences.

  I needed some input from him.

  “I need to figure out what I’m going to do now that I’ve been given this new life,” I told him.

  He nodded thoughtfully, and I went on. “I’m thinking about moving to Southern California.”

  “Really? When?” he responded. “It would certainly be a change of scenery. What will you do there?”

  I shrugged. “Start over.”

  “Sounds like you have a plan, then.” Although he didn’t say it, I knew he was happy for me. The stroke hadn’t taken me down. I had endured and worked as hard to rehab myself as I had for him.

  We shook hands, and he left. Right then, I knew I’d made my decision. Staying in Chicago, seeing the financial district buildings that I had been accustomed to working in, seeing the hospital where I basically lived for eight weeks after my stroke . . . no, none of this excited me.

  Exercise Turns into Strategy

  Meanwhile, in 2007, the people at RIC (the aphasia director and some stroke/aphasia doctors) wanted to know about my other aphasia program experiences. They knew I had gone to the experimental program in Orlando, but they were more interested in learning about the UMAP program. They wanted to know which program I felt had given me the most benefit.

  “Which program had better experiments, therapists, settings, or techniques for you? How many participants attended? Could you help us set up the same thing at RIC? How would that look? Do you think you could put together a brief presentation for us?” they asked me.

  Can I do this? I wondered. I’ve given plenty of presentations in the past, but the stroke . . . I didn’t say anything aloud. I didn’t give them a definitive answer, but I decided to do it. I started preparing without anyone knowing my plan. It was, in essence, a strategy development exercise to see if I could define and plan a strategy—in this case, develop a new, intensive aphasia program. I had learned how to formulate, create, and execute strategies thanks to my education from Wharton—it’s where my roots were. I started by going back to UMAP, this time as a consultant, not as a patient. I stayed for two days, observing and taking notes.

  Then, I toured the Adler Aphasia Center in Maywood, New Jersey. Their program was totally different from UMAP. Instead of being attached to a hospital or university, they had a stand-alone building totally dedicated to aphasia. It was strictly an outpatient facility.

  Buses picked up the participants Monday through Thursday and brought them to a large building: thirty to forty people from the New York–New Jersey area on Mondays and Wednesdays and a different group on Tuesdays and Thursdays. The clinicians ran a different group every hour, and the facility also had a lounge with couches, TVs, a small kitchen, tables, and computers that could be used during personal time. If someone didn’t want to participate in a group, they had the option to spend time alone in the lounge, watching television or using the computer. There was even the option to attend a group here and there but still spend the whole day at the facility, doing other individual activities and socializing with other stroke survivors at lunch.

  I segregated my day to be in groups in the morning and then the computer lab from one to three p.m. At four o’clock p.m., the buses came back and took everyone home. I stayed and talked to the director of the program about how they did it—how they made this program so enjoyable to be a part of. There were no patients at the facility on Fridays, just the therapists who planned their clients’ activities for the next week.

  I also toured the Aphasia Institute in Toronto, Ontario. Their program was like a combination of Adler and UMAP. They invited Toastmasters to come and present different topics and speaking guidelines, and then three or four stroke survivors would speak. Afterward, the instructors and Toastmasters would give critiques on what the people with aphasia struggled with. They gave tips on how to improve for next time. This was valuable information for survivors and caregivers.

  When I came back from these three facilities, I had a proven model in my mind. If you wanted an aphasia program that could go on without a definite end date, so that you made it part of your daily living, then New Jersey’s example would be the way to go. I could see that people who went to Adler used it as a new routine, like going to the club, attending group sessions to learn and improve and building that structure into their lives. If you wanted something more like a blast of intensive therapy for a short-term duration, and to build it as one of the components of your overall rehab plan, UMAP or Toronto was the answer.

  I wrote up my conclusions and suggestions and brought them to Dr. Elliot Roth, RIC’s medical director of patient recovery and professor at Northwestern Feinberg School of Medicine. I also presented to Leora Cherney, RIC’s director of aphasia research and treatment.

  “Look, why don’t you expand this and give us a strategy for this new aphasia business? We would like to have something like this,” Dr. Roth told me after seeing what I had prepared.

  I couldn’t believe it: They took my plan and ran with it. They kept the Aphasia Club, but they added a new program based on my strategy so patients could go through six weeks of intensive therapy, right there, at the Rehabilitation Institute of Chicago.

  I learned a lot of valuable information from doing this exercise, especially how to relearn a lot of skills that I had before the stroke. I could still do that kind of strategic planning job, after I had experienced a massive
stroke, while dealing with the aphasia. I could still formulate and write on a level that required the abilities and skills I had used throughout my career, especially those I had learned at Wharton. Albeit, my communication wasn’t on the same level as it had been before my stroke, and I needed way more time to process things.

  But, at least I was moving in the right direction. I found that incredibly reassuring. Two years after my stroke, my writing and speaking were a little better than they had been, and they were dependent on each other for improvement. I could see the light at the end of the tunnel—the day that both would work in concert. I was plugging away, and this project kept me positive and my emotions intact.

  Tony

  Right after Ted had his stroke, I read up on how it was supposed to affect him. That’s when it really hit me. I realized he was in for a lot of challenges, and he might not ever be the same. He might get frustrated or angry because he has aphasia—he has this disability. He might get angry and ask himself, Why me?

  Ted was totally the opposite. But that’s Ted. The stroke did take some things away from him, but it did not take one of the biggest parts of him, which was his ability to rise to any challenge.

  Now he’s in this different environment. His challenge now, day to day, is staying ahead of the curve. That’s why he’s always busy.

  One day, several years after his stroke, we were casually talking, and he was telling me about things he was doing, still totally involved with stroke research and aphasia, and he said, “Yeah, I did a speech at NYU.”

  “A what?”

  “Oh yeah, I did a speech for a couple hundred people and talked to them about my stroke, aphasia, and stuff like that.”

  Whatever he’s faced with, he just deals with it, he works on formulating the best form of attack. Nothing is going to stop him from continuing to be productive and successful. Staying busy motivates him.

  That’s so Ted.

  CHAPTER 17

  Expanding Creativity