Joining Citadel meant leaving New York City. For the first several weeks, I rented a small apartment in Chicago while Kelly sold our place in New Jersey. She joined me as soon as she could, and we began house hunting. We were excited to start a new chapter in our lives.
“The realtor called. We can go see the place tomorrow,” Kelly told me one day after we’d been living in the small apartment in Chicago for a few weeks. Excitement laced her voice. This move had been big for me, for my career, but Kelly also saw it as a new opportunity for our future.
She handed me the listing information.
“It’s big,” I said, eyes undoubtedly wide. This place was huge compared to the homes we had seen in Chicago previously.
“Big enough for kids—a couple, at least,” she responded with a shy smile.
I smiled back. “Tomorrow works.”
We bought the house, but we never got around to having the kids.
Change on the Horizon
We both knew something had gone south in our relationship. In fact, we’d started seeing a marriage counselor a year or so earlier. Children were on the table in our discussions. So was divorce. Something wasn’t working anymore. But we remained close friends (and still are).
And my legs hurt, especially my right leg. I’d talked to my doctor many times during previous years about my varicose veins. He insisted they were superficial and nothing to worry about. I’d started wearing knee-high support socks several years before. My doctor advised me to wear the ones that went all the way up onto the thigh, but since I worked out every day and the doctors weren’t concerned, I wasn’t concerned.
In March of 2005, I told Kelly about my plans to go to Mauritius for business.
“I have to visit Mauritius for a couple of days, for the company,” I told her. I knew that it was a gorgeous locale in the middle of the Indian Ocean, two thousand miles off the African coast.
“Would you have any interest in turning the trip into a vacation?” I asked her.
She was definitely interested, so we booked reservations for a full week, excited to escape the cold Chicago weather.
Poor Kelly; this was the trip where she ended up staying in the room with the flu for most of the time. Then we went home. It was no problem for me to spend more than twenty hours flying to and from that island paradise, given how often I traveled for work.
Three weeks later, I would go from a place where life was great—sitting on a beautiful beach in Mauritius—to being in a hospital fighting for my life.
What a difference a few weeks make.
CHAPTER 12
Turning Point
“ We’re going to make a trip to Michigan,” Kelly said.
I remember being shocked by the statement. I expressed my confusion.
“UMAP. I’ve done the research. The University of Michigan’s aphasia program is among the best in the country,” she explained.
I liked the idea of the road trip. I was able to get away and focus my mind on only one thing.
Kelly
I called UMAP in November 2005, seven months after the stroke. They said they didn’t take anyone until they were at least one year post-stroke. We went up to Michigan to see the facility anyway.
Going to UMAP
Sometime in December 2005, Kelly and I took our road trip to see the UMAP facility. In addition to moving forward with my recovery, we also decided that it was time to welcome a new addition to our lives. I needed a companion, so we stopped at a breeder in Michigan and bought a pug, which turned out to be a wonderful therapeutic animal. We named the pug Sullivan, after Dr. Terence Sullivan, who was my general doctor. He had been with me since the beginning. He knew a lot of people in the city, and he always had tips or comments for me. He had a lot of patience with me after the stroke, and he listened to what I was trying to say. Patience is a virtue, and boy, I learned that quickly. He became a sort of confidant for me regarding the potential implications of the stroke and aphasia.
While Kelly had many discussions behind the scenes with the UMAP staff, I sat in on a couple of sessions with a group of people who had experienced strokes and were in the middle of their sixweek program. A couple of them had come back for a second time, some as young as twenty-five and some in their fifties or sixties. They taught the rest of us a bit about what to expect from the program. I thought that this program could be a good fit and a valuable opportunity for me.
Kelly arranged for me to start at UMAP in January 2006.
So nine months after my stroke, Kelly and I packed my clothes and moved me into the Ayres Hotel in Ann Arbor, Michigan, for six weeks. It was absolutely freezing—even colder than Chicago.
Kelly
The people at UMAP strongly advise their stroke patients to stay in one of the two hotels they use; the shuttle bus drivers understand that their passengers have aphasia and really watch over them. They also advise the caretakers, like me, to go back to our own homes and leave their loved ones alone to let them be somewhat independent. So I brought Ted to Ann Arbor, got him checked in and set up with the staff, stayed at the hotel with him for a couple of days, and then drove back to Chicago.
But before I went back to Chicago, Ted and I met Joy, a fantastic speech therapist at UMAP.
Kelly and I met Joy Fried together my first day at UMAP. After we talked for a few minutes, Joy sat me down alone.
“I don’t really understand what you’re saying. You are jumbling your words,” she said and paused to allow me to digest the information. “Your brain doesn’t know how to reorder them. Part of it is a lack of words. You understand the concept, but your brain can’t translate that into words—the right words in the right order.” I knew it was true, and I knew it was hard, and I cried there in her office. “Don’t get down on yourself, Ted. You almost died. You didn’t, though, so you’ve conquered the first challenge. Now, let’s just take it easy, work on the basics. The rest will come.”
Joy was very honest and a pleasure to work with. She became my coach, and she challenged me as the program continued. If I had a bad day, she’d talk to me about it the next morning.
“What happened to you last night?” she’d ask. “I talked to one of my therapists, and she said you got very frustrated with the verbs.” Joy was nice, but she didn’t let things go. She was also fair and not strict.
Kelly
That first night in Ann Arbor, before I returned to Chicago, Ted and I went to dinner at Zingerman’s Deli. While we ate, Ted told me, “Joy said I’m not comprehending well.”
I don’t think he used the word comprehending, though. These conversations were never easy. They took a long time.
“The girl,” he said.
“You mean Joy?” I asked.
Then he nodded. Our conversations would go back and forth in that way for a while, until I eventually understood what he was trying to get across. In this instance, it was, “Joy said I’m not comprehending what I’m hearing.”
Oh, yes, I know! I know that! Thank God somebody told you! I thought.
Before UMAP, communication with Ted was quite difficult. I’d say something to Ted like, “You know you have a doctor’s appointment tomorrow, right?”
And he’d say, “What are you saying? You’re not making any sense.”
“I am making sense.”
“No, you’re not. First you said something different.”
“I’m reminding you that you have a doctor’s appointment tomorrow,” I’d say.
“You never told me that.”
“Yes, I did.”
I knew he wasn’t fully comprehending what I was trying to tell him, but he thought he was, because in his mind, he heard the words and knew what he wanted to say. He had disconnects between his ears and his brain, and between his brain and his mouth.
Thankfully, part of Joy’s job in helping him improve was to be honest. She told him, “You know Ted, you’re not always comprehending things. You’re not always understanding what people are saying to you.”
That night at dinner was one of the few times I ever saw him cry about what had happened to him because of the stroke.
He tried to tell me that he had communicated effectively and clearly to Joy about his day with the therapists. That is what I presumed from his speech. But I knew (and Joy knew) his ability to communicate and his comprehension were broken.
Even though that was scary, it was a pivotal moment for him. He had severe expressive aphasia, so he knew he had difficulty with speech. Now, he realized that hearing and comprehending were also hard.
On My Own
On day two at UMAP, I told Kelly I’d see her around, and she went home to Chicago with our pug. I’d been walking Sullivan mornings and evenings since we bought him. With both of them gone, I knew my life was going to get even worse. I would be alone in Ann Arbor. I’d have to meet new friends. I’d have to take a bus to the facility from the hotel. I’d have to figure out how to get dinner every night.
Those simple things weren’t simple for me. I was on my own for the first time since my stroke. I didn’t want to eat in the hotel every night, but I couldn’t go to the grocery store for food that I would have to prepare, because I didn’t have any kitchen appliances—or even a kitchenette. So, I just sat there in my room contemplating and feeling sad. It was a far cry from what I used to do. I remembered when I worked and had to talk to so many people during the day to build relationships and do my job successfully.
The second or third time I went to Joy’s office, she pulled out a Wall Street Journal. She said, “What is the interest rate today? What is it doing?”
I said, “Up.”
She said, “Okay, explain that to me. Use one or two verbs.” She knew that I used to work in the finance industry, so she knew I read The Wall Street Journal before the stroke.
“What stock exchanges am I talking about? Dow Jones or NASDAQ?” she asked.
I had to relearn those words. I had to really study every day.
I had to meet with Joy for fifteen to thirty minutes every morning at UMAP, and she’d ask me these kinds of questions every day. She knew this was the best way to get to me. Getting me to use those financial terms helped me improve sentences and regain words.
The UMAP program was great—and intensive. It ran from nine in the morning to four in the afternoon. It was a grind, but I knew I needed it.
I had speech therapy twice every morning and once every afternoon. One session was private, and the other two were small group therapy sessions with three or four people. I was with the same group of people in these sessions for the six weeks that I was there.
Two or three days every week, UMAP also ran a music program and slotted me to attend. We sang “Happy Birthday” almost every time I was in music therapy. If it wasn’t someone’s birthday in the program, then we would sing “Happy Birthday” to a famous person whose birthday it happened to be that day.
I was supposed to get up there and try to sing. But I didn’t. I couldn’t sing. That was one thing I simply could not do. Even to this day, I can’t sing, but I can hum. I decided there were only twenty-four hours in every day, and my time would be better spent elsewhere. If I wasn’t trying to sing, I could be doing other things. I went back to Joy.
“I have to change sessions,” I attempted to tell her. “Let me go back to learning pictures and looking at verbs and nouns,” I pleaded as best I could. She did understand, but she didn’t agree. So, I continued to try to sing “Happy Birthday.”
They also put me in a daily art program. I walked into the room with some hesitancy. It was a fairly large room with several tables. On one of the tables was a pile of magazines. I was immediately intimidated seeing so much written information. It overwhelmed me.
“Look through the magazines and pick one of the dream cars you could see yourself owning,” the therapist instructed.
I picked something like a Maserati or a Lamborghini.
The therapist said, “All right. Do you remember this? Do you know what this is called?”
I tried, but I couldn’t answer. I couldn’t even remember what a Chevy was. Finally, I said, “It’s not a Ford.” At least I gave an answer . . . but something else also happened. At that moment, and I didn’t realize this at the time, I subconsciously started a different way of communicating. I looked for new words, rather than leaning on words that I should have known. About half of the time most people would understand what I was trying to say, and therapists would usually get it perfectly.
Unlike the therapy I had at RIC in the hospital and in Northbrook, where the therapists moved from group to group every day and sometimes client to another client, I saw the same therapists every day at UMAP, which was fantastic. They got to know each patient’s progress, and they would report back to Joy every day. My therapist knew what I was struggling with in particular and could pick up where she left off the day before, as opposed to coming in cold every single day and having no idea where I was in my recovery. We were also able to review the words or the articles of speech that we had discussed the time before.
It’s not that the therapy one institution provided was better than another. They were all working toward achieving one goal—helping me get better. It was up to me to pick which type of therapy I liked. For me, it was best to take notes, study, review, and repeat information over and over with the same teacher. Due to my prognosis at that point, I needed this type of therapy. Someone else in my situation may need something different.
My therapists weren’t too hard on me and didn’t force me to do anything I was having trouble with, but anything I had a problem with was noted so it could be addressed later.
“Car, tire, road,” she said after that. “Try to remember these words—car, tire, road.” Then, as if she hadn’t mentioned them, she moved on to the day’s assignment. When the day’s lesson was finished, though, she came back to these words.
“Okay, now we’re going to move back. You know those three nouns I told you to remember at the start of our session? What were they?”
I didn’t know. It was so frustrating. Having gone through this program, I learned from Dr. Taber, my neurologist, that my brain had not yet reorganized itself. The nouns and verbs would come into my brain but leave just as quickly. In order to retain them, I had to practice and stay focused.
Getting with the Program
I got into a routine at UMAP, and I liked my therapy sessions very much. I had breakfast with my group, and then we had therapy together. After therapy, we would break for lunch. Afternoons involved more therapy, a break, the last of the day’s activities, and then a return to our hotels.
I had lunch every day with nine other stroke survivors, and we all had different problems associated with aphasia. My speech was focused on nouns and trying to memorize them. Sometimes, I spoke broken phrases with few (if any) verbs. I would try to have conversations with them, to explain what happened to me—the stroke, RIC, the surgeries, and so on. The youngest two of the group had caregivers, who were probably their mothers, with them.
It was a tough time for me. I had trouble adjusting to the UMAP program, especially because my stroke was so recent.
In one of our therapy sessions, I played computer games to see if I could identify synonyms. In another, we read and discussed simple books, like Curious George. The therapists were young and fun, and they had a lot of patience. But still, I got frustrated during the sessions. They’d say, “Take it easy. Take your time.” They would set me up with a joke, and even if I couldn’t answer with the punch line, at least I was getting it—I could comprehend the joke and laugh about it.
There was a lot of repetition within the therapy programs at UMAP, but in a good way. I would learn, review, and repeat many of the exercises over and over again. To a person who hasn’t had a stroke, the exercises would seem straightforward and simple.
For instance, I had to learn, review, and repeat the following chart every other day to help me learn verb tenses:
“Whe
re did you guys go for dinner last night?” the therapist would ask. We all had to find the words that connected with the questions they asked.
And someone in the program would raise their hand and then respond, “Yeah, okay, where we went last night was the restaurant by the hotel.”
That wasn’t me. I wasn’t the guy who raised his hand during these discussions, where there were a lot of people around the table. I was still learning, recovering my speech. I liked UMAP’s aphasia group participation, but I could neither keep up nor participate in these general discussions.
“Ted, tell me where you went last night,” said one of the therapists, but I couldn’t use the right words, and I couldn’t formulate sentences. And, they couldn’t stop the flow to let me find the words, because one hour would turn into three. So, they would say, “That’s okay. We’ll come back to that question.” And thanks to the excellent therapists, conversation kept flowing.
We had many book discussions and also discussions about the program in general. We sat around a big table with the therapists and their bosses—the people who taught the therapists—on one side and about five of us stroke survivors on the other side. We discussed what we thought about the books we were reading. We also shared our views of the UMAP programs—what we liked and what we didn’t like.
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