‘Word soup’

Christmas came and went. The rehab facility was able to schedule my initial evaluations the week of Christmas – rehabilitation therapists don’t seem to get much in the way of holiday vacation since TIRR was scheduled to be open and providing all therapies and groups for its patients. At the time, I would have found it inconvenient had evaluations not been available during the week of Christmas, whereas I’m now grateful to the people who have chosen to be therapists, social workers and staff members in a field where giving up holidays, personal and family time is expected.
Monday, December 23rd, arrived and I was as nervous as I had been on my first day of college when I was 16 and younger than the dual-credit students. I woke up that morning wanting to empty the contents of my already empty stomach. I was so nervous. Before I knew it, I was in the passenger seat of our Prius watching the houses lining Bissonet Boulevard slip past us. I turned my head to watch as we passed the street that I would have turned onto to get to Kat’s house. I wondered if I would ever go there again. The steps to the front door would be too difficult to get a wheelchair close to. She would be marrying Erick in March and moving then anyway. Whenever the last time was that I had been there would likely be the last time I would ever be there. I would have to get used to realizing a lot of ‘last time’ events. Oh well.
We arrived at the rehabilitation center soon after passing other streets I recognized. The first place that I had rented with Adam, back when we were roommates and I was dating other people, had been nearby. Street names seemed familiar, like Buffalo Speedway and Kirby Drive.
Getting out of the car. Once I did that, I would have to be rolled inside to meet people. It was exhausting to think about. I had never been so anti-social in the past, so what was wrong with me now? I had always liked to meet new people. You’re being ridiculous, I thought to myself as I reached my left arm over my body to open the car door. My right hand wouldn’t cooperate with such movements yet.
I sat and waited for Adam to unload the wheelchair and put the cushions on it before wheeling it to the car door. He angled the wheelchair appropriately and then locked the wheels. Still reaching forward, he let me grasp his forearms and pull myself forward enough to swing my backside into the chair. It was a difficult thing, getting out of a car, in the early months of my recovery. Don’t take simple movements for granted. One day, you may have a brain injury and think back on this story and how easy it was to scroll to another section of it. I hope that you’re one of the lucky ones who never has a stroke and never has to wonder how you’re going to read the next portion of a story.
Adam rolled me across the parking lot and into the building. The different colors of the walls, though pretty, were confusing. I had no sense of mental mapping. I had always been reasonably good at creating mental maps with very little information, but this time I couldn’t do it. We left the main hall and passed through a room containing gym equipment, a lunch room and another hallway. My brain seemed angry at not being able to make a map. I don’t remember what happened next on the schedule, just that I was at some point wheeled into the Board Room and told that I was going to be in the Challenge group that day, and that only patients were allowed in the group. Adam would have to wait in the lunchroom. First, he was allowed to sit next to me and fill out some paperwork for me. Ataxia in both sides of my body wouldn’t allow me to write for myself. Shortly after Teresa, a clinical social worker, finished a brief overview of the Challenge program Adam handed the paperwork to her and left.
The Board Room had four tables in the middle of it, set up corner to corner and forming a large rectangle with seats along the outside of the rectangle facing inward, so that there was no head to the tables. Adam had wheeled my chair to the left side of the room and removed a chair so that he could replace it with my wheelchair. A middle-aged man sat two chairs away on my left and a teenager who had come in with his mother sat across from me. Two other people were there but I don’t recall who they were or what they looked like. The most glaringly obvious thing to me was that I was in a wheelchair and they weren’t.
I got choked up during my introduction. I sounded funny. In the inpatient hospital, several speech therapists had worked with me on inflection. My speaking voice was very monotonous back then. Place a finger on a piano keyboard and press down on one key repeatedly while speaking. I sounded like that early on and had to learn how to lift and lower my voice appropriately while speaking, like when asking a question. That was the earliest indicator, to me, that ataxia had impacted my vocal cords. I miss singing.
I pushed through my introduction and listened while the others talked about their injuries and impairments. I kept wanting to say things but the words would get scrambled before coming out of my mouth. I couldn’t get them in the right order for some reason. It was very much like expressive aphasia. It still happens when I get very nervous or upset. One of the social workers at TIRR describes it as ‘word soup’. Knowing what you want to say, but being unable to because it’s as though someone tossed all of your words into alphabet soup and you have to try to fish out each word again. It’s one of the most frustrating side effects of the stroke.
After the hour had passed, Adam came to collect me and roll me to the next item on the agenda. As frustrating as my inability to speak had been, the group had been fun. People had talked and included me. For 30 minutes, I hadn’t been invisible. I was just a shy girl sitting at a table talking to people. I had been nervous, sure, but interacting with people I didn’t know helped me to feel a little more ‘normal’ again. I know that I’ll never be normal, per say, but I don’t know of another word to describe it. Whatever it was, it was nice.

One response to “‘Word soup’”

  1. Dysgraphia is just the opposite of dyslexia. Dyslexia means you have you trouble with input such as reading. Dysgraphia you have trouble with the output such as writing and speaking. I’ve had years and years and years of intensive training for the writing, but would still prefer others to do my writing. I’m glad most things are done typing nowadays because you can’t tell how bad my writing is. When my aunts had strokes they were all older and actually switched from being right hand to left in most cases. I hope it doesn’t take you as long as it took me to get legible words. You will find your voice again, I just know it.


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