Relentless

by Ted W. Baxter

  That level of normalcy was good for me, because I was contending with a lot of frustration elsewhere. I couldn’t read; I couldn’t write. I could see the hospital signs, the elevator signs, the therapists’ cards, but I couldn’t understand them.

  “Ted, did you hear me?”

  “Ted, can you tell me what it says here?”

  “Ted, are you feeling okay?”

  “Ted?”

  I heard my name a lot while I was an inpatient at RIC, and I knew that some of those voices belonged to the nurses. Others, I’m sure, belonged to friends. And, of course, Kelly was always there for me, but I rarely understood what was said to me, and I couldn’t respond. Even if those voices were my friends, I wouldn’t have wanted to see them anyway.

  I understood that I wasn’t the same as before. And, truth be told, the stroke hadn’t only impacted my brain, my voice, my intonations, my speech, my overall communication, and my physical movement; it had beaten and battered my pride. Would it change? Would I ever be able to regain my pride and my abilities?

  Although I couldn’t talk to them, and while I would have shied away from the company at that point, I came to realize how important it was that I had the support of friends and family during that period. They were playing a big part in my recovery. Until I was able to speak full sentences, I didn’t want to see them, but later, I came to understand that their presence and support is what I should have been focused on.

  Aphasia Enters Our Lives

  I couldn’t have said it, and I certainly wouldn’t have understood it, but my wife was becoming an expert on aphasia, which is an impairment, resulting from brain damage, of the power to use or comprehend words. She brought RIC’s director of aphasia research and treatment, Dr. Leora Cherney, into my room.

  “Okay, Ted, we are just going to make a short recording of your speech so we can use it as a gauge for how well you are improving,” the doctor told me.

  I responded, but I can’t say for sure what it sounded like to Dr. Cherney.

  “Remember, try to form words, but don’t be frustrated if you can only manage sounds at this point.”

  It’s rare not to be able to make sounds at all, so in aphasia treatment, any sounds are progress.

  “One of the major manifestations of stroke is a difficulty communicating with speech. This disorder of speech and language following stroke, which is also accompanied by problems of memory, is called aphasia. It’s surprising how few people are familiar with this term, given that the disorder currently affects as many people in the United States as Parkinson’s disease—over a million Americans. From the Greek meaning ‘without speech,’ aphasia is far greater than lack of speech. It is a disruption of the entire brain system by which we communicate and understand meaning using abstract symbols, such as spoken and written words, signs (in the case of sign language), or the raised dots of cells (in the case of Braille). It also affects our ability to understand how those words are put together and how to disentangle the specifics of a message from its component parts.”

  —Steven L. Small, PhD, MD, professor and chair of neurology, and E. Susan Duncan, MA, MS, CCC, speech-language pathologist and PhD student

  “It’s too early to get him to come into our aphasia program, but I have to give him something that will help him speak. He needs a starting point, because right now, he can’t even speak ten words. Let’s get Ted to take a trip upstairs,” Dr. Cherney told Kelly.

  So they took me to a floor where the tech people were. They were trying to create a better way for people with aphasia to communicate. The device they’d come up with was like a precursor to a smartphone or a tablet that talks to you. (This was in 2005.) They showed me how to work the device, and it made sense. I’ve always had an affinity for playing around with technology. I was astute with BlackBerrys, but I lost that ability with the stroke, and it would be yet another skill that I would have to relearn.

  “Ted, this is going to be wonderful for you,” Kelly said to me, excited at the prospect. “He’ll figure it out. I know it will take time, but Ted will figure this out. Can he take it with him?” she asked.

  They gave me the most advanced version they had. I took it back to my room and immediately started playing with it.

  The techs’ instructions were in my brain, but by the time I got back to my room, I lost them. I could comprehend what they were saying when I had been in their department, but when I left them, it was gone. It was as if I had a three-minute memory.

  I couldn’t even express how frustrated and angry I was.

  Kelly, my life . . . it’ll never be the same. I’ll never go back to the office. I’ll never sit in on those meetings. What am I going to do? There were many times during the recovery process when I let frustration get the best of me, and this was one of them. What if I can never speak again? I looked at her as the thoughts circled through my head, knowing that she couldn’t hear them. I’m going to do it, Kelly. I’m going to speak. Even if I can’t accomplish it all, I’m going to do that. You have to hear me.

  Siblings

  “How’s he doing?” I heard the voice even before they had walked in the room.

  “Better. He’s getting better every day. Physical therapy is doing wonders for him.”

  “Can he say much yet?” I didn’t hear the response, but I didn’t need to. I couldn’t greet him, but I was extremely happy to see my brother Jeff walk into the room. “Everyone is worried for him still.” It was such a comfort to know that my family was by my side.

  Perhaps it was seeing my siblings, or maybe it was the moment of revelation with the technology, but around that time, I found that my determination to recover grew by leaps and bounds. By the time that my sister, Nancy, came back to Chicago, I was convinced that my recovery was up to me. As long as I wanted it badly enough, it would happen.

  “Ted, we have great news,” Nancy said to me when she arrived. “The doctors are going to let you go out for the day.”

  “Just make sure you guys take care of him,” the nurse warned, moving to help me make the transition to the wheelchair. She was obviously hesitant, but Kelly, Nancy, and I were excited.

  “Where do you want to go?” Nancy asked. I couldn’t answer, but Kelly could.

  “How about the deli? It’s not far from here.” Kelly loved the place, and I liked the idea of good food. I especially liked being out of the hospital.

  There was only one problem . . . I hated being in the wheelchair.

  CHAPTER 6

  I’m Okay, Except I’m Not

  One month after the stroke, I was still paralyzed on the right side of my body—and in a wheelchair. As soon as I could move anything new, I forced myself to use that part of my body as much as possible. I will walk again! The words were like a mantra inside my head, and I said them so often that I made them come true.

  “Well, Ted, we are going to miss you,” one of the physical therapists said to me when it was time for me to be released from RIC. “You’ve done an amazing job,” she added as I crossed the room with her at my elbow. I was walking. Granted, I had a notable limp, but I was walking.

  Kelly was smiling when we came back to the table where she waited. I think I smiled back.

  “You can take this cane home with you today, and if you need—”

  “No.” I didn’t say much, but I said that. I pushed the cane away. I was walking, and there was no way that I was going to rely on aids any longer.

  Tony, My Best Friend

  Kelly thought it would be best if I waited to see Ted until he got out of the hospital. He had only been out of the hospital for a little while when I flew in from Texas for the day; it’s only a two-hour flight to Chicago. Kelly and Ted picked me up from the airport. She drove, of course.

  We went out to a restaurant, and I noticed he had a limp. He couldn’t talk too much, but he pointed to a drink on the menu. Goose Island IPA. When Ted and I used to go out, he always ordered the local beer. Some things never changed. However, I think he only
had about two sips of his beer that day. That determined glint had been in his eyes when he pointed to the menu, and I ordered the beer for him. It was a look that said, “I will have this. I will not let this stroke get the best of me.”

  We stayed out for a while and communicated as best we could. It’s safe to say, I did most of the talking. But he was there. He was healthy. And he listened intensively.

  He was still Ted, though. His determination was in place.

  The PFO Incident

  One of the reasons why I had the stroke—unbeknownst to me—was that I had a patent foramen ovale (PFO). This is a birth defect that results in a hole in the heart; it simply didn’t close the way that it should have. This PFO allowed the blood clot to travel directly to the brain, rather than having it diverted to the lungs. Upon reaching the brain, the clot caused an ischemic stroke, a blockage of oxygen-rich blood to the brain. Later on—four or five months after the stroke—I was rolled into the operating room so the doctors could surgically close the PFO. Though it is recognized as a defect, having the PFO may have saved my life. Had the blood clot been sent to my lungs instead, it could have resulted in a pulmonary embolism, causing sudden death.

  “. . . just a localized numbing agent. It is a routine procedure,” I heard the doctor saying to Kelly. “He’ll be awake, but he won’t feel a thing. We’ll apply a medical device to close the PFO. We can do the whole procedure with a catheter tube so he will have no visible scarring, and there will be a short recovery period.”

  Those words were likely a comfort to Kelly. After all, we were already in the midst of a very long-term recovery process.

  Unfortunately, things didn’t go exactly as planned.

  “Mrs. Baxter?” One of the doctors approached her shortly after the procedure was underway.

  “Yes! Where is Ted? They said this would only take a few minutes?” she asked.

  I hate the thought that she was scared for me again, but she said the doctors came to talk to her as soon as they could. Inserting the device was not as easy as they had hoped. The first time they went in, the device was too small; the second time, it was too large.

  “I apologize that we weren’t able to get to you sooner. The second attempt was unsuccessful as well, but the PFO is now plugged and Ted is doing well.”

  That second device was too large, and it proved difficult to handle. It released itself from the catheter the doctors used to guide the device into the appropriate place and started to float toward my aorta.

  I saw what the surgeon was doing on the monitor, but since I couldn’t talk, all I could do was think, Holy shit! I hope he gets it the next time!

  “The device did detach from the catheter for a minute, but we were able to retrieve it quickly. No damage was done, so the recovery should be quick. We’ll bring you in to see your husband very soon,” the doctor told Kelly.

  They were right, the recovery from the surgery was easy and uneventful, but I was far from being done with my recovery. I didn’t know then that coming back from a stroke would be a lifelong journey. It was nice to be home again, but it put a new level of pressure on Kelly, who had to drive me to RIC Northbrook, which was fortyfive minutes each way, for the next two and a half months—Monday through Friday.

  “You’ve made excellent progress,” the therapists at RIC would tell me, and it was true. It had been about five months since the stroke, and I was back to 70 percent of what my physical state and abilities had been before the stroke, but that wasn’t good enough for me. I pictured it like a barometer: My body before the stroke was the goal. I wanted to, ultimately, get as close as I could to that pre-stroke physical state, so I had to push myself back up to that mark.

  Start with a Plan

  Kelly knew my frustration.

  The physical growth was coming along, that was true.

  “The RIC therapists are happy with your progress, Ted. You are doing great,” she told me one afternoon.

  But I wanted to talk. I wanted to hold conversations.

  Kelly wanted that too. We had just pulled out of the parking lot, finally heading home for the first time since the stroke.

  I was happy that it meant I was one step closer to normalcy. I looked over, and Kelly was staring at the front of the RIC building. I could see her shoulders shaking before I heard her sniffles.

  I fought for the words to ask why she was crying now, at such a good moment, and came up with, “What?”

  “Oh, Ted. I was so worried about losing you. And then, I was so grateful to have you, to know that you were going to live. But now . . . now I’m worried about the future. What if you never speak again? Are you going to be okay? Are we going to be okay?”

  I put my hand on hers. I couldn’t answer her, of course, but I was confident. I was determined. I wasn’t going to let her down, and I certainly wasn’t going to give up. After a few minutes, she calmed down and we were moving again.

  “I have an idea, Ted. I’ve been talking to Jeannette. She and Tom want to help. She and I think that flash cards might help you.”

  She pulled the car into the parking lot of a local bookstore. “Are you okay walking in?”

  I was. I nodded my head yes.

  “We’ll just go see what they have,” she said.

  We walked in, and Kelly walked toward the back of the store, keeping pace with my slower gait. We reached the flash card section, walked past the SAT study cards, and past those meant for fourth, third, and second graders. We landed directly in front of the kindergarten flash cards.

  “Good?” Kelly asked.

  I smiled. We perused the various cards and workbooks but left with only a pack of first words flash cards. It was a good starting point, and Kelly agreed that she would come back and pick up some of the workbooks when I was ready.

  But it wasn’t only the words themselves. I could say a few and I could understand several others, but stringing them together was pure frustration. It took me weeks to comprehend what full sentences meant, like, “An apple a day keeps the doctor away.” While this was some progress, the comprehension didn’t last. I would say it, understand it, and immediately forget it. Moments later, I didn’t know what I had just said. My memory was shot!

  Kelly

  He had a plan for how he was going to approach his therapy. Whether it was the physical or the speech therapy, he had a plan. For example, he created a home education program. We started with one-word flash cards.

  “Ready?” I’d ask, the deck of cards facedown in front of me. He was always ready, so I’d flip up the card.

  “B—b—b—”

  “Banana,” I would finish for him.

  “Ba . . . na . . . na . . . na.” He would get the sounds out, but they wouldn’t always be in the right order or at the right pace. But he wasn’t going to give up.

  “Ba. Na. Na,” he’d say.

  And then, “Ba. Na. Ba . . . nana. Banana.”

  “Yes! That’s it,” I would say, excited.

  We’d flip through several cards, half a dozen or so at a time.

  “What is this, Ted?” I’d ask, when we came back to the first card again. He would look at the picture, then at me, and then at the picture. He would search for the information, but in only a few minutes’ time, it had already disappeared. He shook his head. Oh my gosh, you just had it. I would silently cheer him. Then, I would get upset for him. Then, I would get frustrated, and I would have to walk away. But he didn’t. He was determined.

  There was some excitement in the work, some noticeable growth, and that made it easier to keep going.

  “Look, Ted. You have a package.” I sat by and watched as he opened the box that had come from Jeannette. She was trained in special education but was working as a high school principal at that time.

  “Workbooks,” I said as he pulled them out, not overlooking the irony of the situation. This was a man who was a mathematical, financial, problem-solving superstar, and now we were excited about kindergarten through third-grade workbooks.r />
  He was happy to have them and the flash cards for five-, six-, and seven-year-olds. He worked on coloring books and fill-in-the-blank sentence books with problems like, “An __________ a day keeps the doctor away.”

  “BlackBerry,” he said.

  “What did you just say?”

  “BlackBerry,” he responded, and I stared at him, amazed. He was pointing to it and calling the device by name. It was 2005, and at that time, BlackBerries were the hot thing in mobile phones. He was one of the few people in his company who had one, and he had absolutely lived on his BlackBerry before the stroke, so maybe I shouldn’t have been shocked. But I was. He couldn’t say more than half a dozen words, but this one came naturally.

  “BlackBerry,” he said again and smiled. I handed him his BlackBerry and smiled back.

  Not all words—few, in fact—came so easily. We laughed about the mistakes and the struggles as he recovered. That was the great thing: how he found humor in this craziness coming out of his mouth. Sometimes, he would just shake his head and we’d laugh. Because it’s crazy. Aphasia—seeing how the brain processes speech—is a strange thing.

  We did laugh about the mistakes, but there was frustration, too. I couldn’t say what I wanted to say, but that didn’t mean that I was any less intelligent.

  “Aphasia is an impairment of language affecting the production and comprehension of speech and the ability to read or write. This is not a loss of intelligence,” the therapist told me. “We know that. You know that. But a lot of people don’t know that.”

  It was true. I had to be understanding of how others perceived me. I didn’t know about this aspect of aphasia1 before my stroke, so how could I expect others to understand? I just had to work harder to recapture my memories and comprehension. It was never fast enough, and it was frustrating to lack the ability to interact with others as I once had. Every month, I got better with practice . . . but my progress was extremely slow!

  “B— b— b— beeeee,” the woman on the computer screen would emphasize the sounds of the letters and the movement of the lips and tongue. One letter after another—first the vowels and then the consonants. This was the first application that I had for the computer that would teach me how to form words letter by letter.