“Beeee,” I would mimic, trying so hard to form the letter perfectly with my mouth. The building blocks in these early days were small, but they were crucial.
I quickly found that the rehab process took different forms. The outpatient program at RIC Northbrook had many tools.
“Today, we’ll try a crossword puzzle,” the speech therapist would say during lunch breaks. Some probably would have scoffed at the idea of doing work during their lunch. I didn’t, but that doesn’t mean that I didn’t struggle with it. Making sense of words, speaking them (even within my own head), spelling them . . . all of it was excruciating.
That was just lunch—the real sessions took place before or after. I had group speech therapy every day, too, and that was torture. The therapist wasn’t speaking only to me but to a group of three of us. All of us had a different “flavor” of aphasia. I wasn’t even sure I knew what the word crossword meant, and the puzzles proved extremely challenging.
“What do you think about this?” a therapist would ask. The picture could have been of anything. Some were landscapes and others were ordinary objects. It didn’t really matter what it was, because at that point, some of the other patients could talk about it, but I was limited to yes, no, or all right.
Unfortunately, the group meetings with that therapist did not result in the desired rapport. Not for me. I was frustrated with the exercises and even more so with the group aspect of the therapy. It wasn’t working for me, not with the particular form of aphasia I had. But at the time, I didn’t have a choice.
“What do you think about this?” she’d ask about something else.
I want to rip up your therapy notebook and get out of here, I’d think, but I could only say, “All right.”
Fear and Frustration
I often say that I didn’t get discouraged, but that isn’t entirely true. I had a bit of hidden anger and frustration.
“How was therapy?” Kelly asked.
“No,” I said, shaking my head. I pointed at the briefcase beside the desk and the filing cabinet in the corner.
“I know,” she said. And she did know. I wasn’t alone in my frustration. “It’d be wonderful if you could do all of that again,” she said.
I used to present reports. I used to give speeches at conferences, to the clients in Tokyo, staff in London, CEO in Chicago . . . I was so fluent.
“You’re getting better, though, Ted. You’re making improvement,” she reassured me.
“Yes,” I said, but only because I couldn’t say no fast enough. At this point, I had been home for two months. My competencies, my work, my gift for finance were completely gone. This was not how my life was supposed to go. I was supposed to be able to get better right away and return to work. I was frustrated, angry, sad. I barely understood those feelings before my stroke—who had time for that? But by now—about five months after the stroke—I lost it all. I was on the verge of tears every night.
What if I can never talk to you again, to my family again, to anyone again? The questions turned round in my head, but I couldn’t ask them aloud. Kelly knew, though.
“You’ll speak again, Ted. You don’t ever give up,” she told me.
She was right, but there were moments when the frustration would work its way in and the fear would take hold. In that first year after my stroke, I worried about getting into conversations with friends, that they would be embarrassed by me. Maybe they wouldn’t want to converse with me because they didn’t have the time to sit and talk to me, to wait while I found the words. I couldn’t fluently summarize my thoughts or ideas into coherent sentences until I found some of the words. Until I could speak to them, I didn’t want to see my friends. They wouldn’t want to talk to me like this anyway, I would rationalize. The truth, though, which I soon realized, was that these were my truest friends, those willing to take time to come see me. Real friends will always be patient, and as soon as I recognized that fact, it became much easier for me to participate in conversations.
“The words are there, Ted. There in your brain. They didn’t go away, but they are hiding. You have to find them again,” one of the therapists told me, perhaps seeing my frustration. “You just have to find the key that unlocks the door, and then you’ll have them all back again.”
You know what they say—there are reasons why God put you in this world. He gives you a purpose to exist. I thought I had known mine before the stroke, but that wasn’t going to fit any longer. I would have to find a new purpose and life mission.
1Aphasia is a communication disorder caused by damage to the brain that impairs the ability to convey or share information and feelings, especially when speaking. It may also affect writing, reading, and comprehension of language.
CHAPTER 7
Not Fast Enough
As the months passed, I continued to push myself as an outpatient. I set small goals and worked little by little toward getting better. I didn’t know where my effort would lead, but I knew it would be an improvement. The physical therapists at RIC Northbrook seemed to understand my need to push my physical state. I was determined to build myself up, even beyond where I was before my stroke, and they did the best they could to help me without letting me hurt myself.
During lunch breaks, I went outside with one of the physical therapists. “Take a shot,” I was told. I stood halfway between the foul line and the hoop itself and looked up at the basket. I closed my eyes to concentrate my effort, bent my knees slightly to give myself a little more power, and pushed the basketball upward as hard as I could. I felt it leave my fingers.
The ball traveled upward, but only for a short distance before it began its downward descent again, missing the hoop by more than two feet.
“It’s getting better, Ted. Closer than yesterday. Do you want to shoot again?” the therapist asked.
Even getting the ball that far in the air had taken a tremendous amount of effort, but I took the ball and closed my eyes again.
We followed the same sequence of therapy sessions every week for four weeks, Monday through Friday. But one day that first summer after my stroke, two or three therapists organized about fifteen of us together onto a bus and took us to a gym in the nearby Jewish Community Center (JCC).
“It’ll be fun,” I heard one of the therapists saying to one of the patients, who was unsure about the unexpected field trip. “We’ll all enjoy a change of scenery.” It was true. The JCC had an auditorium where you could see speakers give presentations. It had racquetball courts. And, it had a gym—a big gym.
“A little bigger than the RIC gym?” one of the therapists remarked to me as we walked in for the first time. I was quite pleased. RIC in the city had only five or six workout stations, but this was a real gym, complete with ten treadmills and several elliptical machines. As we kept walking through the facility, I took it all in. There were more machines for lower body workouts—quads, glutes, and so on. There were pull-down machines, bench press machines, military press machines. There were so many possibilities, and I was immediately excited.
“You’re free to try any of these,” the therapist said after noting which machines were RIC approved for us. “I’ll be right over there.” And just like that, I was standing in that gym, watching the therapist pick up a cup of coffee and take a seat on the far end of the room.
I quickly became increasingly comfortable in that gym, and I watched the therapists as I walked on the treadmill. I could feel the muscles in my legs loosening and welcoming the movement. And I watched as the therapists stood with their coffees and walked toward the door, likely wanting a couple of minutes to talk among themselves in the sunshine. As soon as that door closed behind them, I started pushing the button.
My legs moved faster and faster, and then I was jogging. The treadmill was set at 5 mph, fast enough that I had to make the switch to a jogging motion. I pushed the button again and watched the speed climb to 5.2 mph, then 5.3 mph.
“What are you doing?” I heard the yell before I looked up
to see the therapist rushing through the door and directly toward me. “Stop!”
I slowed the speed to a walk and then slower still, until I came to a stop. Then, I stepped off and looked at the therapist, who led me toward the same door they had just entered through. Once outside, with the door shut again, the group of therapists looked right at me.
“Ted, you can’t do things like that. If you were to fall . . . you’re putting yourself and the RIC program at risk. The medical care, the lawsuits. You can’t take those chances, Ted. It is not acceptable.”
“I . . . don’t . . . care,” I tried to say. Looking straight at the therapist who had reached me first, I muttered, “I . . . have to . . . run again.” I am going to run faster than I ever have before, I promised myself.
That was the only time I ever pulled a stunt like that, though. You can imagine, I’m sure, that the next time we went to the gym at the JCC, the therapists stayed inside, sipping their coffee and keeping a close eye on me.
The Monotony of Routine
I still wasn’t happy with the speech therapy I received at RIC Northbrook. We followed the same routine every week.
This included the Boston Naming Test (BNT), which assesses anomic aphasia, an impairment of the ability to name objects. The BNT uses sixty drawings of objects, some common and some less so. The purpose is to name them—banana, axe, donkey, motorcycle, and so on—to test a person’s memory.
The weekly routine also included the Western Aphasia Battery (WAB), which uses thirty-two tasks in eight groups to assess language function. This information is used to determine the degree of, and the type of, aphasia.
We used the sixteen increasingly complex configurations of the Visual Form Discrimination Test to determine if we could discriminate between different geometric shapes every week.
And we did the Wechsler Memory Scale, which tested various memory functions—auditory, visual, and immediate memory versus delayed memory.
This was the routine. Every week. I was growing more and more frustrated with each repeated task, because in my eyes, I wasn’t progressing, except for the finger-tapping test.
“Okay, now tap your left index finger,” the therapist said. This was the finger-tapping test, which was meant to assess the neuromuscular system. The concept was to do a direct comparison between the left and right side of the body. She shook her head, squinted her eyes, and looked at me. “You’re wrong. You’re tapping your right finger.”
“I know.”
“No, Ted. Tap your left finger,” she said when I tapped with my right hand again.
“Really?” I asked her, and even with my limited speech, it was clear that I was being sarcastic. I was pissed that we were finger tapping again, three weeks in a row. I was bored. My comprehension was coming back, but the therapist was strict. She didn’t let me go. She was taking notes about what I did or didn’t do. She would tell me to clap two times, then four times. I was always thinking about the test and measuring my progress myself rather than listening to what the therapists were saying.
I would undergo the same evaluation every Monday, the same battery of tests every week, and still . . . I wasn’t progressing.
“This isn’t enough,” I told Kelly when she came to pick me up one day. The therapists were too concerned with following the textbook process, and that wasn’t enough for me. I wanted to move, I wanted to grow faster, and I needed a variety of activities.
Kelly understood and was willing to help, though I came to realize later that the repetition had a purpose. While it felt repetitive to me, the clinicians were trying to give me the time and space that I needed to develop my speech. They would move around the room, for instance, asking questions of everyone in the group, and if a patient got stuck on an exercise, then they would simply move on and come back to that problem two or three sessions later. But I couldn’t get past my frustration. In my mind, at that time, I wasn’t getting any better or moving forward, and it was because I was being subjected to the same tests over and over again.
I needed spontaneous, casual conversation added to these exercises.
From Northbrook to the City
Kelly had to be my advocate, because I wasn’t ready to speak for myself yet, especially through the phone.
“Do you have an outpatient speech therapy program?” she asked and stood listening for quite some time. “Wow! Yes, that would be wonderful.” She paused to listen again. “Yes, we can do that . . . Great! Yes. We’ll see you then.”
It was that phone call that connected me with therapist Melissa Purvis at the main RIC facility in Chicago. This had to be in addition to the therapy that I was already doing at RIC Northbrook, which meant leaving one to drive directly to the other two times per week, but it was entirely worthwhile. Melissa was a great speech therapist.
“What’s wrong, Ted?” Kelly asked one night on our drive home from the Chicago facility.
“Tired,” I replied.
“It’s a lot—to be driving back and forth. Do you want to keep doing it?” I could hear the hope in her voice. I know that it must have been torture for her, always carting me around while trying to keep up with her undergrad classes and fielding many telephone calls from family, friends, and others who were concerned with my recovery. Kelly was also researching the various aphasia programs all over the country, to determine the best one for me.
“No.”
“You want to cancel your sessions with Melissa?” she asked.
“No,” I answered as she pulled up to a red light. She turned and then asked me again, like she was making sense of my response.
“You want to leave Northbrook?”
“Yes,” I said.
So after that, we sold the house in Kenilworth in order to move into the city, on Erie and Rush. The new place had a lot of light and great views, but even better was the fact that I’d be close enough to walk the five or six blocks to the RIC facility. That meant that I could continue seeing Melissa and enroll in RIC’s physical therapy department. And it gave Kelly a well-deserved break.
Kelly
When the real estate agent came and put the sign up, Ted said, “What’s that?”
I said, “Remember, we had that conversation . . . ?”
It wasn’t that he didn’t remember us talking about selling the house. He didn’t comprehend it.
“We’re going to sell the house because right now you’re not working, and the rehab’s going to take a long time, and it’s in the city, so until you’re back to working . . .
“When you go back to work, then we can reassess where we want to move, but for now, I don’t want the stress of this house payment.”
“No,” he’d say, shaking his head and waving hands. I knew what he meant. “Oh no, no. I’m going to go back to work soon.”
But I knew that wasn’t going to happen.
We moved at the end of August, about eight months after my stroke. Moving was laborious: going back and forth, back and forth, every couple of days for about two weeks. That time is a little blurry. We hired a moving company to move all the furniture, and we put some of our belongings in storage. Kelly had to figure out what should go in storage, and when we arrived at the storage place, she told me what to do.
“Ted, just pick up these four boxes and set them on that table,” she said, pointing at them to emphasize. She had to lay out the instructions basically and clearly so I could understand. This is how it had to be.
Despite the frustrations of moving, it was worthwhile. Living in the townhouse was better for me because it was in the heart of Chicago. I had everything in front of me, and I didn’t have to drive. I couldn’t drive, so being able to walk everywhere was wonderful. There were a couple of delis I passed on my way home from RIC where I could have lunch. I also had direct access to large gyms, larger even than the one at JCC. I joined a couple of them, including Crunch Fitness. I had real freedom again, in day-to-day life and also at the gym. That helped my post-stroke life both physically and mental
ly. From a rehab perspective, all this exercise helped my physical recovery, my comprehension, and my speech, but it also helped my mental state. I felt more independent and more in control. I felt more like myself.
I timed my entrance into Crunch Fitness because I didn’t want to have to try to explain my intentions in front of a lot of people, so I would wait until late in the evening to go. By that time, most people had gone home to settle in for the night. There were a couple of machines in use, but the facility was much more manageable and less populated at this time of the day.
When the manager approached me one night shortly after I joined the gym, I smiled. I knew going in that it wouldn’t be easy, but I started a conversation with him. I needed to tell him what I needed from the gym. It was difficult to explain, with a limited vocabulary, but eventually he understood. I had to be paired with a good trainer who would be patient with my recovery process—someone who could reteach me how to do certain exercises. The manager had the perfect trainer in mind.
The next time I entered the gym, I was introduced to an ex–San Diego Chargers running back. I learned a lot from our sessions, but the lesson that really stuck with me was the concept of muscle memory. He talked about it often. I had to perform the same exercises every time I came in, until finally, they stuck. I would repeat these exercises enough that I would eventually be able to perform them without conscious effort. I had to rediscover my muscle memories.
“Good evening,” our neighbor would say as I stepped off the elevator of our apartment building in the evening.
“Is there anything I can help you with?” the gym employees would ask when I came in each day.
“What can I get for you?” I’d be asked at the deli.
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