Relentless
Page 12
One of the most useful parts of UMAP, I found, was that I had a chance to build a rapport with the therapists there. They got to know me; they spent time with me. At the hospital in Chicago and other programs, the speech therapists rotated so often that it was hard to truly see my improvement.
At UMAP, they were knowledgeable, and they cared. It made a big difference in my recovery.
Finding a Friend
There was one guy in the program with aphasia who I got along with really well. His name was Tom Hilgendorf, and he was from Texas.
The first time I met Tom, he asked me about what happened with my stroke and where I lived. I responded as clearly as I could, and he was able to understand part of it. Then I asked him, in broken English, “How many times have you been in this program?”
Tom understood what I was asking him and said, “I think twice before.”
It was something I started doing at every therapy program; I’d find someone to interact with every day and see how well they understood me. It was a way to measure my progress, and I’d do it with different people throughout the day. At first, I targeted only others with aphasia, but soon, I began approaching people without.
The first time I met Tom, he invited me to dinner.
There will be more conversation. I am already tired. I have to look at the homework before bed, I thought.
The truth was that I wasn’t ready for a full dinner conversation yet.
“Can’t,” I said, and I went back to my room, got my book and pictures, and practiced my homework. I guess it was my desire to get through this program and regain the words, the articles of speech, the colloquial sayings—all the language I had lost. I didn’t know if this program could fix my speech entirely, though that is what I had hoped. But I crashed when faced with certain hurdles, like the prospect of having to carry on a conversation through dinner. It hadn’t occurred to me how difficult it would be to relearn English, or how slow that process would be.
When I got back to my hotel room each night, I would pace. I walked across the hotel room, to the window, then to the table, and then back again. Sometimes, the room would close in on me. I didn’t particularly like sitting alone in my room at the hotel every evening or eating in the hotel every night, but what else was I supposed to do?
Tom asked me to dinner two or three more times, and by the end of my second week at UMAP, I took him up on the offer. We went to Applebee’s. For him, to explain our situation to the waitress was unbelievably tough. He was way better at it than I was, though. I had to point at the menu. The waiters were patient, which was good for us.
I didn’t want to eat alone every night, but I also didn’t want to go out with somebody every night. When I ate alone, I had time to get back to my homework. But I realized after about a month in this program that in order to get better at speaking, I’d have to socialize. It didn’t really matter who I talked to. I just had to put my toe in the water. Those days were difficult for me . . . ordering a cup of coffee at Starbucks, asking a stranger for directions, or interacting with the cashier at the grocery store. And I didn’t take for granted, for example, that I could go to Starbucks and order a latte without practicing beforehand. I guess it was the situation I was in—aphasia, UMAP, trying to regain my speech. Interacting with strangers was great practice for me. I developed unscripted exercises and used them frequently. And eventually, they worked!
CHAPTER 13
Setback . . . a Seizure?
About three weeks into my six-week stay at UMAP, I decided to rent a car. Now technically, I was not allowed to rent, or even drive, a car, but I obviously wasn’t going to let that stop me.
Unfortunately, this is when a lot of things went wrong.
I had been taking the UMAP bus that was designated for people with aphasia to and from UMAP every day. When I got back to the hotel, I’d drive to the YMCA to work out for an hour and a half. The people at UMAP knew I was going to the YMCA. The people at the YMCA got to know me.
My wife didn’t know about the car or the YMCA.
Kelly
I remember calling him and saying, “How was your day?”
And he said, “Oh, good.”
“What’d you do?”
“Surprise.”
“A surprise? For me?” I asked.
“No.”
“You got a surprise for you?”
“Uh-huh.”
“What is it?”
“Green.”
“Green? Did you buy a backpack to carry your cards and papers to UMAP?”
He started laughing. Then he said, “Hertz.”
And I said, “What? Did you rent a car?”
“Yeah.”
“Somebody let you rent a car?” I thought, Oh my gosh, a green car. I’m thinking of something like a backpack, a bag, and instead he’s gone and rented a car!
I couldn’t stop him from doing things like that, and I honestly didn’t want to, because that’s Ted, and he had already come so far in his recovery doing things his own way. I wasn’t going to micromanage him and tell him he couldn’t. He needed to do that; he needed that independence. How do you go from being an executive to being told, by your wife, that you can’t drive a car?
Sometimes, I did say things like, “Ted, you shouldn’t be doing that.” But I couldn’t stop him. In fact, he thought it was hilarious. I could hear the gears turning in his head: As soon as she leaves and drives back to Chicago, I’m going to Hertz!
That’s so Ted.
The rental associate from Hertz took my lack of speech to mean I was a foreigner, and I didn’t bother attempting a different explanation. I gave him my identification to review and signed many insurance papers. Then, I took the car and ran!
Actually, I was quite careful with the rented car. I drove it slowly to the YMCA gym. It took about ten or fifteen minutes to get there.
I was careful with my workout at the gym, too. I did a little exercise regimen that included stretching and using the StairMaster.
What messed me up, though, was that I did my regimen without any food or water in my system on that particular day.
It was a Saturday, but I had returned to my old ways, in a sense. That meant that I went to the gym every day, even on the weekends, and coming in early on a Saturday morning meant that the gym was nearly absent of people, so I had my choice of machines. I headed for the StairMaster, and warmed up for a couple of minutes before increasing my pace to my typical workout speed.
Suddenly, the music playing in the background grew fuzzy.
Ow! My scream echoed through my head as a painful sensation like a jolt of electricity shot through it.
I grabbed for the handle of the StairMaster, but my hand kept slipping. Suddenly, I was spinning, or at least my head was.
I’m going to pass out. Just grab the handle. Grab the handle, I thought. But I couldn’t, I blacked out, and my head slammed to the floor.
When the paramedics arrived, my thoughts were clear, or that’s what I thought. Later, I found out that I had not been thinking clearly at all, and my answers and comments to the paramedics and doctors were a little off.
I hadn’t eaten breakfast that morning. I had only had a cup of coffee and a little water. I thought that maybe this is what caused me to black out and fall. I wondered if dehydration was to blame. I complained of a small headache near my left forehead.
I told the paramedics that I had baseline speech expressive aphasia. And at the time, my speech seemed normal—normal in the sense that it was as it had been the past few weeks and no worse.
I was taken to the University of Michigan Medical Center emergency room and kept in the hospital for a day, and I was allowed to go home that night. I didn’t think the incident was a big deal at all.
As it turned out, I’d had a seizure. I was out for fifteen minutes rather than four or five minutes, as I had initially thought. My thinking it wasn’t a big deal meant that I didn’t realize what had happened. I wasn’t comprehending.
“Oh my God, did you have another stroke?” she asked.
“No. No stroke. Seizure,” I tried to respond. “It didn’t feel like anything. I just blacked out.”
“But was it a stroke, Ted? Did it do more damage?” Clearly, she was understanding little of what I was saying, even though it sounded normal to me. So, it was a guessing game, which was frustrating for both of us. We both knew we had come further than this in our ability to communicate, and now it felt like we were back at square one. How had this happened?
When I got back to the program on Monday, my therapists knew about the seizure and asked me what had happened. They were compassionate and kept asking me if I was all right.
After the seizure, I lost some of the words and phrases I had regained. It took a lot of energy to focus on saying words and forming phrases again.
Dr. Taber had warned me months ago that I was going to have seizures, but I hadn’t understood what that meant at the time. He said seizures were common after a brain injury.
When we spoke again, after my seizure, he said, “Your brain is like Jell-O right now, Ted. It’s healing, but it hasn’t stabilized itself yet. Now that you have had one seizure, it is even more likely that you’ll have another.”
This guy had the ability to predict things like this. He was an oracle, and I was thankful to have him as my neurologist.
After the seizure at UMAP, I thought, Okay, now I know what’s going to happen, so I’ll be very careful if the sensation I felt happens again. I can help the recovery of my brain, like having more water, especially in the morning. But if I can’t stop the seizure from happening, then I’m just going to accept it and keep pushing on through. So that’s what I did.
CHAPTER 14
I Decided to Win
After I finished my six-week stint in UMAP in February of 2006, I returned to Chicago and resumed my therapy sessions with Melissa at RIC. I also reached out to the speech clinic of Northwestern University and contacted Doreen Kelly Izaguirre, the speech therapist Melissa recommended before I went to UMAP. Kelly had decided to go to school to get a bachelor’s degree and was busy with classes during the day. We lived so close to RIC in the city that I could walk there twice per week for physical therapy and to speech therapy at RIC with Melissa.
I returned to Chicago with a new attitude. The twenty-four-month mark since my stroke was approaching all too quickly. Twenty-four months was when the doctors told me that learning and regaining my abilities would plateau, but I only saw this idea that I would plateau as a challenge. And, after a long, hard rehab, reflecting and contemplating, I seized it! This would only be the beginning of my recovery. I knew I would continue to grow.
Nevertheless, time was on my mind, so I stopped going to physical therapy at RIC in the city. I joined a gym, got a trainer, and worked out every day at six thirty a.m., pushing myself for up to an hour and a half. On the days I went to Northwestern, I’d be done with speech therapy around two in the afternoon, so I’d spend some more time in the gym, and then I’d get acupuncture.
Funny enough, the acupuncturist I saw wasn’t sure he could help me at first. He was from China, and his English was not so good. Understanding each other was a challenge, but if we could find a place in the middle, we could sometimes have a good conversation. That was yet another outlet for me to get better at speaking. He said he’d try to help, but he wasn’t sure how much it would improve my speech. But when I told him about my seizures, he lit up. “I can definitely help you with that,” he said. “Now I know where we’re going to go. If I can work on the flow in your brain, it will help your speech get better and help to prevent further seizures.”
Soon, my speech was progressively getting better, though I couldn’t say what was helping most. Acupuncture? Running the treadmill at the gym? More therapy?
“Ted?” Kelly said with surprise one evening as we sat talking.
“What?” I answered.
“Your speech . . .”
“What?” I asked again, confused by what she was trying to say, a little nervous.
“It seems . . . it’s so much better. I just realized that it’s always better on the days that you go to the gym, when you run on the treadmill.”
My nervousness dissipated and was replaced with happiness. It made me feel good to hear her say that.
About the time I started seeing the acupuncturist, I also started using Earobics, which was software for language learning. It had lots of games with names like Memory Matrix, Rhyme Time, and Sound Check. One of the most useful games was one where I had to listen for subtle differences in similar words—for instance, clean and clan or fan and phone. Another program called Parrot worked on building strategies for getting the correct word out. Often with aphasia, you know what you want to say, but you can’t say it or you say it incorrectly. Parrot helped me think of the first letter, describe the item or action, and associate the word with other words to help recover that language skill and say the correct word. I learned that if I couldn’t remember the correct word, I could describe it in other ways to get my point across. These games were extremely helpful.
Kelly
Ted’s favorite therapist from UMAP, Joy, had sent Ted home with a four-inch binder full of exercises, and of course, Ted did them. He went through each page of that binder and did the exercises over and over again. She gave him other things to do to enhance his communication skills, too.
Ted really likes working with smart, competent people, and he will find them. He loved Joy. He respected her, and she really helped him, even after he came back from UMAP. In fact, he went up to Michigan when she opened her private practice there and worked with her for a week.
I finally joined the Aphasia Club at RIC in the city, which met twice a week, on Tuesdays and Thursdays. As I listened to others tell their stories there, I heard the same struggles in them that I had been contending with. If I get better, so much better that nobody knows that I have aphasia, I can help people like this, I thought.
That was my intermediate goal. It wasn’t like I wanted to be a public speaker. I was aiming for small goals that turned into medium goals, before I got to the big goals. I also participated in research experiments set up by the aphasia director at RIC. I sat in front of a computer, listened to someone talk, and then repeated the sentences I heard. Every time I went through one of those six-week experiments, my speech got a little better. With each experiment, I focused on different details that I needed to work on. First, I worked on nouns and second, verbs. Then, I tried to memorize and say an entire fragment and then a sentence. And then, I tried to improve the intonation of my speech and so on and so on.
We’d also practice simple scripts written by the therapists and based generally on our own life experiences. We would try to memorize them, placing a lot of focus on the key points of the short conversations. For instance, the script might go something like this:
You: Nice to meet you. Are you from New York originally?
Mary: Oh no. I moved here from Boston. I transferred jobs.
In this example, I would try to focus on the “from New York originally.” In doing these exercises, we learned to converse more freely and to work on the tone and content of our questions. And, by emphasizing certain words and phrases, we could get the point across, even if the other words failed us. So, for example:
You: Well, it was nice to talk to you.
Mary: Okay. Bye.
If I couldn’t remember the full two sentences, then I focused on the key points. I could, at the very least, say, “Nice talking,” which would get my meaning across.
Maximizing My Rehab
Sometime during 2007, the neurologists and stroke doctors I talked to at RIC told me it was time to think about my left vs. the right side of my brain. There was a portion in the left hemisphere that I didn’t have anymore. At least, that was their hypothesis. And
for me, I would try anything to get my speech better.
“You’ll build neurons that will go around the dead cells, but that will take some time,” I was told. “You’ll learn that your right brain will begin to compensate. You’ll find new ways to do things, and you’ll do them with the right hemisphere of your brain.”
When I went to UMAP, I couldn’t do math and I had trouble figuring out simple things—getting from point A to point B. Those are usually left-brained tasks. I had to figure out how to work those kinds of things out using the right hemisphere of my brain and maybe by using some connections that I had on the right side of my brain in a different way. It was a little slower, but it would work.
I rented a car on Mondays and Wednesdays (which nobody knew about, including my wife) to get to Northwestern University Speech Clinic in Evanston, where I had two types of therapy. The first was one-on-one, but they approached therapy differently. They introduced new techniques during these sessions.
One day, the therapist greeted me and then said, “Okay, I’m going to put on CNN on my laptop. Listen to what the newscaster says in this clip, and then summarize it for me.” It sounds simple, but it was tough for me. “Can you tell me in one or two sentences about what you just learned?” the therapist would ask. They would want me to summarize the clip with words like, “This is a clip about—” This is easy for me now, but at the time, it was frustrating and difficult.
I simply looked at her for a moment and realized that I couldn’t. “No. Do it again,” I responded, and we watched it all over again.
I was still relearning how to put nouns and verbs together and how to access the parts of my memory I’d lost. Pronouns, adverbs, and prepositions were still out of my reach, but my comprehension of the overall gist of the clip seemed to get better. Having to regain the ability to memorize the minute details of English, on top of learning nouns, verbs, and so on, was a tall order. But I knew I could conquer this. Eventually, I began to build new pathways in my brain. I had to practice, practice, practice!