Paul Fisher came twice a week for three hours because he had never seen someone so determined … so clear on what she wanted to achieve. Part of my speech therapy and personal therapy was becoming immersed in language: speaking, reading, writing, emailing and texting. We wrote a manuscript together as part of the healing process.
This is an excerpt from the first time he came to the house:
Allison and I viewed her situation through the same lens. We both believed that time was of the essence and opportunities to work were not to be squandered. Her deficits were not going to fix themselves. We were going to fix them.
We dropped off my therapy materials at the dining room table and got down to business. I asked Allison to show me the house and talk about it in detail as if she were a realtor showing a house to a prospective buyer. She agreed and led me outside, down a long driveway to the ground floor entrance next to the garage. I asked typical questions about the house; number of levels, number of bedrooms and bathrooms, what year the house was built.
Allison answered correctly, often following a noticeable pause, but offered no embellishment. I asked a question and she answered it. Period. I would learn as time passed that she often visualized an answer in her head, but then had to translate the images to words and words to speech. Her strategy was to use as few words as possible to respond.
The first room she showed me, quite fittingly, was her office. It was smaller than I had imagined it, but I realize now that my surprise was evidence of a misunderstanding on my part. The small room that she showed me that Friday was indeed an office, but it was just her home office. Her true office was not a traditional one with a hulking desk, bookshelves and filing cabinets.
Her mind was her office. It was a massive facility filled with innumerable files and memories which were interconnected and organized in such a way that she could retrieve and explain them in a fraction of a second. Pre-stroke. Pre-stroke, she spent countless hours in this cerebral office, calmly and effortlessly pulling files, synthesizing information, solving problems and creating novel ideas in half the time that others took to simply process the information or identify the problem. The stroke had broken into her office and ransacked it, leaving some files in disorganized piles and others locked in cabinets, the keys to which lay hidden somewhere deep within the mess.
Allison explained to me, a few words at a time and with frequent clarifying questions from me, that she had had a small closet converted into an office as soon as they bought the house. The shelves were packed tightly with books and magazines. The majority were books related to education, but there were also a few unrelated books, both nonfiction and fiction.
I noticed Ayn Rand’s The Fountainhead immediately. Its presence on her shelf was appropriate. Rand’s heroes were the men and women of the mind; individuals who harnessed the amazing power of the human mind to shape the world around them. They created. They invented. They changed the world in their chosen field of expertise, whether it was industry, transportation, science, architecture or philosophy. Allison was cut from the same cloth. She was a thinker. She was not at the mercy of a chaotic world and its daunting problems. It and they were at hers.
I also noticed that some of the books in her office were written by her. I knew that she had written five books, but seeing them on the shelves drove the point home much more forcefully. She had sat at her desk so many times pre-stroke, reading articles, writing articles for magazines and websites, preparing slideshows, presentations and keynote addresses. But as we stood at her desk, I got the impression that she felt like an outsider. An intruder in her own home. An ill-prepared, poorly equipped understudy playing the role of Allison Zmuda.
In conjunction with working with Paul, I also started to my outpatient speech therapy session.
The enormity of the pressure to get as much as I could from these sessions was overwhelming and I cracked within the first five minutes of meeting the therapist. It started pretty easy — she gave me a copy of the Boston Naming Test, the same one I had done with Paul. I passed with flying colors. But the next one was a reading comprehension test and I absolutely folded.
Now, let’s be clear. Pre-stroke, I was a terrible test taker. I could convince myself that at least two out of four answers were incorrect and then I had to guess. I was elated to get out of high school relatively unscathed, however I did take an SAT review class three times (twice for free) because they had mistakenly guaranteed me that I would improve my score by at least 100 points.
I read a two-sentence statement and then I had to answer a multiple choice question. The tears streamed down my face as I struggled to find the answer. I was spiraling downward. I couldn’t think, couldn’t process, couldn’t find the words. For the rest of the multiple choice test items, I read the passage and waited for the appropriate period of time before I quietly whispered, “I don’t know.”
We then moved on to another part of the Boston Diagnostic Aphasia Examination. She placed a picture in front of me and asked me to “describe the actions” in the scene. Well this is ridiculous. This is an insult to my intelligence. This is … I don’t know what this is in words. Focus. Try to focus.
“There is a girl and a boy. The boy is on a stool and the girl laughs at him. He wants to get a cookie.”
“What else do you see?” she asked.
“A mom is in front of the kitchen sink. The water is overflowing.”
She made a few notes. I know what she is writing down. She thinks that I have moderate aphasia. She thinks that I can’t do it. She thinks that I can’t read between the lines of the picture.
But I couldn’t read between the lines of the picture and she was writing down my condition both to file her preliminary report as well as to describe to my husband what we were up against. She debriefed us in a small conference room. I felt so small, so invisible, while my husband and my therapist talked about me.
“Allison puts enormous pressure on herself to go back to work and to resume her normal duties. It could take months, years even for her to get back to where she once was.”
“Will she fully recover?” asked Tom.
“I am optimistic because she is young, but you never can tell how the brain will recover from a stroke. Her language will improve, but I don’t know if she can do this line of work independently. At least not now.”
In that moment, I understood how a student shuts down on the first day of school: I was done. I would do my homework, but I was done with her.
Don’t you dare sell me short. I don’t know if you have met me before. Hi, I am Allison Zmuda and I can do anything. And if I can’t, I will find a way around it, over it, through it. But don’t you tell me what I can and can’t do. Besides it is ludicrous that you could have a co-presenter in my line of work. How could he know what I was trying to say if I didn’t know myself?
I arrived at Allison’s house on the third session, exchanged pleasantries. Then I reached into my pocket and placed a small black object on the table.
“What is that?” she asked.
“A voice recorder,” I answered, smiling.
I explained that it was extremely important for us to record her language. It was the best way for her to become more aware of her errors.
“Quite often,” I said, “you aren’t fully aware that what you’re saying isn’t exactly what you are thinking or intending to express to others. Am I right?”
She shook her head yes. She and Tom had told me about instances when Allison had become frustrated by Tom’s inability to understand her. Tom was doing the best he could with what she said to him, but the reality of the situation was that she knew what she wanted to express to him and she tried to express it adequately, but she was unaware of the difference between her spoken language and the true meaning of the message she was trying to convey. The gap was sometimes vast, rendering the spoken language incomplete and impossible to fully understand, even for her husband, who knew her better than anyone else did.
“You have to identify your errors and deficiencies to correct them, right?”
Another head shake.
She didn’t mind recording her language, but it was obvious that she didn’t look forward to listening to it.
Therapy tasks in those early sessions focused on connected speech, requiring her to string words together in sentences, narratives and conversation. One of the first tasks we recorded was a series of sequencing activities.
Making a Peanut Butter and Jelly Sandwich
“First you take the breads and then you um…you form…uh, you (2 second pause) you get a knife from the drawer and then you um open peanut butter and then you scoop some out and then you make a sandwich (laughs, knowing she has skipped plenty of steps and rushed to the end).
Wrapping a Gift
“Um, first you um, un … wrap … unwrap the bag. Then you roll out some paper. Then you um, fold a … a … then you fold (2 second pause) a (2 second pause) then you fold and you tape and then you (2 second pause) make a bow (ending the description with increased pitch, in a sort of triumphant tone, as she often did when she completed a task successfully).”
Decorating a Christmas Tree
“First you cut down a Christmas Tree. Then you drive home. Then you um … take it up the stairs and you um … uh … pour (2 second pause) some water and have a tree. Then you uh (2 second pause) then you decorate lights? And then you follow the (3 second pause) then you follow the … the (2 second pause) ornaments.”
The sequencing tasks represent another example of skills which Allison would have considered simple and laughable pre-stroke. Post-stroke, however, they were daunting.
It was highly possible that if I had called her daughter Zoe, a kindergartener, into the dining room and asked her to complete the same tasks, she would have performed them better than her mother and in a fraction of the time. Allison was aware of such frustrating truths.
The sequencing activities were highly structured and basic. They were everyday tasks (except for the laundry, of course, which Allison admittedly never did). However, given Allison’s expressive deficits, they were challenging, as impossible as it seemed to her at the time.
Even when she was at her best in such drills, at her most fluent, avoiding lengthy pauses, word errors, awkward phrasing or verbal fillers (uh, um), she still did not sound like herself. She was generally monotonous in her delivery, expending all of her mental energy on finding words and arranging them into sentences, unable to apply cosmetic details such as varied intonation and rhythm. Her cadence was halting and disjointed. Her tone was uncertain. Many of her statements which were intended to be declarative sounded more like questions, as if she was asking “Is that right? Is what I’m saying right?”
She had lost her verbal swagger, a hallmark of her pre-stroke self.
I believe that treating an uncertain world as if it were predictable only gets you into trouble.
What happened to me was not fair. It was certainly not expected.
I have been humbled.
And now, finally, I am picking myself back up off the floor. Without anger or hurt. I continue to ask the question, “What’s next?”
Because for the first time in my whole life, I don’t have an answer. I think that is a good thing, but that’s where I am.
The Full Story
- PART 1: The Day I Had A Stroke
- PART 2: How I Became Unrecognizable to Myself
- PART 3: Persevering Through the Worst Day
- PART 4: When the Teacher Became the Student