In the summer of 2007, Leora Cherney from RIC approached me and offered me the chance to participate in the Archeworks program in Chicago. Archeworks offers a one-year postgraduate program in public interest community design, change, and implementation. This was an opportunity to be immersed in a class with regular people, as opposed to being segregated into those with fellow stroke survivors. It would be a good barometer of whether I could progress while working with others.
Archeworks’ learning philosophy fosters an approach of design thinking and enabling. There are about twenty students in the program every year, and they select from three public interest projects to work on.
When I went there in September 2007, the first of the three big projects they had going on at the time was one that dealt with a sustainable food cycle at a nature preserve. I didn’t know (or want to know) what that was; I listened to the project overview and decided that it definitely wasn’t for me.
The next was Engaging Chicago’s International Communities. The hope with this project was that Chicago would be selected as the city to host the 2016 Olympics. The concept was to design a community for the Olympics in Chicago. I definitely wanted to be on that project, but I couldn’t because of my stroke and because of the last project that was offered.
The last project was the Design of Products for Stroke Survivors for Improved Work and Home Life program. I had been offered the chance to enter in this Archeworks program with one other stroke survivor, and because RIC in the city had partnered with Archeworks, I would be a team member working on a project that focused solely on improving stroke survivors’ daily lives. There were eight people, including me, that would work on the project and participate in the stroke-enabling initiative.
Being part of the Archeworks project was the equivalent of getting extra credit at the school, but not a requirement. Everybody who went through Archeworks had different reasons for participating. For example, it allowed young students to expand their social contacts and interactions, with the hopes of getting a better job. In my case, it was to progress my rehab to better my speech and overall communication. I also hoped to improve team skills while dealing with the challenge of having aphasia and contribute to designing new products or ideas to help stroke survivors.
Building a Stage through Teamwork
Before we started on the Archeworks project, a dozen of us did a unique pre-Archeworks project over the summer. This proved to be exciting and extremely challenging. We built a movable outdoor bandstand that stood eight feet high and approximately twenty feet in diameter. We had to build a cantilevered roof so the entire audience, who would be in a 180-degree arc around the stage, could see the performers. This was the goal: to design, build, and put the stage in action.
For me, participating in the project applied directly to my language challenges. I got out there and worked closely with the other team members and dealt with any problems or impediments as they came up. My aim was to be a project team member that didn’t stop the team’s progress for meeting the goal. I wanted to be an asset for the team. And that happened! The physical work was unlike anything I had done in more than twenty years, and I’d never built anything before in my life!
I suppose it would be like a carpenter being asked to assess the financial viability of a proposed investment. But the project was possibly even more awkward because I was still regaining the use of my right side. So, trying to hold and operate the drill or trying to hammer in the nails involved a steep learning curve. We were building a prefabricated structure in a warehouse to be moved to the site in Minnesota in pieces. And I had to get along with fourteen people. I didn’t know any of them, including the instructor. They didn’t know me, but they knew that I was a stroke survivor.
I faced the challenge of using my right hand, making new friends, and communicating effectively with a team, and then there was the actual problem solving.
“This, folks, is our project,” the instructor said, placing a small model on the table and spinning it so we could see it from all angles. “We have to figure out how to build this, but on a much larger scale, of course. But first, let’s start with this,” he said, dumping a box of supplies in front of us. Slowly but surely, we were able to replicate the model.
The model taught us to leverage each other’s strengths and to coordinate to build the model as a team. It was like when your parents gave you a model airplane with a thousand parts and you had to figure out how to put it together. This was right brain versus left brain stuff, and my left brain still wasn’t strong at that point. My right side ultimately took over, which meant focusing on visual objects and logic.
“Well done,” the instructor said as he spun our model and appreciated the construction, which had taken us three weeks. “Very well done! I guess this means we’re ready for the real deal.”
I had to push myself to go out to the workshop site, which was in a small town outside of the city, in an industrial lower-income neighborhood. I had to be there Monday to Friday, from eight a.m. to six p.m., building things using my hands and tools, and I was problem solving. I loved it. I thought, Well, shit, maybe I should have gone into building houses before!
After we completed building the stage, the instructor said, “It’s time to move this thing to Minnesota and put it into action. The arts community will use it for performances.”
So, we split the bandstand into logical components, loaded it into three vehicles, and headed off to Minnesota to set it up, which took two weeks to complete. It was a huge new stage for them. It was August, very sticky and hot, but I loved the physical and mental challenges.
Real Archeworks: Rediscovering Communication
After we came back from Minnesota, I started going to Archeworks in a warehouse-like facility near my townhouse in Chicago two or three evenings a week, from five to nine. I attended classes there, and I met the rest of my project team to start the actual project—a project to design innovative ways for stroke survivors to reintegrate into their daily lives. I also went back to the ad infinitum therapies at RIC in the city.
“Last year, the project team really focused on how we could physically improve the life of a person who just experienced a stroke,” the instructor explained and then showed us a tray that could be used for multiple purposes. “Try lifting it,” he said.
Each of us tried. It was awkward. The tray was not balanced for the average person. “As many of you know,” he continued, “mundane tasks can be quite complicated for those who have suffered a stroke. By redistributing the weight of the tray, we can allow a stroke victim to carry the majority of the burden with the stronger side of their body.” We all admired the tray and the concept before he set it aside and continued. “This year, we will focus on helping stroke survivors and caregivers discover different ways of doing their daily activities.”
We met in the middle of Archeworks’ warehouse-like building with a handful of instructors. Then, the three groups would separate, each moving to a different area of the huge room to work on their projects.
The first thing my project team did was talk about the ethics, morals, philosophies, and values of creating design in the public interest. We started our project by creating our strategic mission: “We are strongly committed to define aphasia by not only those with aphasia but also by those who are caregivers, family, and friends in the community. We are also committed to design solutions that will help educate and improve communication.” We would be required to do four presentations over the course of the year in front of a hundred colleagues, staff, and instructors so they could see the progression of our work.
As part of our project, each of us worked with three or four stroke survivor outpatients from RIC in the city. I set up an hour to talk to them about what had happened to them, what kind of stroke they’d had, and what their life was like now. Then, I’d share with them my story and what Archeworks was all about. I’d also explain why I decided to participate.
They had caregivers with them, of c
ourse, and I could tell that they didn’t want them there. They wanted to see if they could interact with another stroke survivor on their own. They felt they could make mistakes more comfortably because I was one of them. I had gone through the same thing. My team invited the stroke survivors to come to our presentations throughout the year, and two of the survivors in my group showed up, which was significant for me because I gained a rapport with these survivors. And they felt empowered because they could see my involvement in this project and that I, a stroke survivor, was able to relearn things and participate. I could collaborate with team members and develop presentations that I had to deliver to others without aphasia—which all played a part in my recovery and coming back into the community.
Starbucks
In the concept stage of the project, we were brainstorming different ideas and products, and I was quick to chime in.
“Starbucks,” I blurted out one evening.
When the proclamation was met with questioning looks, I explained to the best of my abilities. Starbucks is a huge corporation that started with a simple cup of coffee and lattes. They now have myriad choices in drinks, foods, and other items. At Starbucks, you have to go into the coffee shop, up to the counter, and order. As most people know, many Starbucks menu items are hard to pronounce for the average person. People with aphasia want coffee too, but to communicate this, they have to express themselves in different ways. We needed to address this. It is already hard for the average person to order at Starbucks. Aphasia makes the process of ordering much more complicated.
My team and I created a prototype menu on a Starbucks cup sleeve so people with aphasia didn’t have to talk to the barista to order. Instead, they could simply check what they wanted—a vanilla latte with skim milk, for instance—on the sleeve. It had the flavors, the size, and all the other information the barista would need. It was a different way to communicate.
I picked three Starbucks in Chicago that were in close proximity to my usual routes and went in to talk to the managers. For the first meeting, I went with two other people from my group. I had to describe what we were doing. The other two people let me do the talking to see if I could do it. The second and third Starbucks, I went to alone. One was near RIC in the city, and the other was in the middle of the financial district of Chicago. I collected information during the day, and I’d go back to my group at night to tell them what I’d learned. Gathering that information was my part of the project. I asked the managers of each shop questions like, “Are you familiar with terms like stroke and aphasia? Could you teach your employees what aphasia is and the impact of this disability on someone’s daily life? What would your employees think about people with stroke and aphasia?” I added their comments to my final presentation.
As we ironed out the details, I found that I was the one being interviewed by the other members of the group.
“Will that work there? As a stroke survivor, if you went into Starbucks and saw this flyer on the counter, would you pick it up and give it to the barista?” they asked me.
Coffee Menu Card
Coffeehouses continue to function as centers of communication. Please use this guide to order your coffee and promote aphasia awareness
“Yeah, I would,” I answered.
“Is the flyer enough? Should it just help with ordering or should it be an informational piece as well?”
In the end, we created a series of brochures that a Starbucks customer could carry with them. It had the same information as the sleeve, plus an explanation of stroke and aphasia—a loss of words, not a loss of intelligence—and some tips about communication. On the back, it listed aphasia and stroke community support centers (i.e., one featured local aphasia and stroke support facilities, and another featured national organizations). These brochures served as a communication tool—a way to get the message of aphasia out there so that people would know what the term meant.
I had to write a script for each of my four presentations, which was good because I knew if I didn’t write it down, I would mess up and experience embarrassment. But the real challenge for me was to speak it out loud in front of the group without allowing my fear to show. I was anxious, and there was a lot of pressure to deliver this speech. I had done hundreds of presentations over the course of my career—more than I can possibly count. I had been persuasive enough to win over top competitors, to deliver our services to top-tier institutions. Those presentations enabled me to grow the Tokyo Price Waterhouse Financial Services Consulting practice from nothing into a thriving business. For those four presentations at Archeworks, I couldn’t even make eye contact with a hundred people in front of me because I had to read from my script for the entire fifteen-minute speech.
It’s another challenge that I continually strive to overcome.
But looking back at the experience of participating in the Archeworks program, I realize that it helped me to improve my language, my presentation skills, and my ability to socialize with new friends. And more than that, I gained a great deal in myself: more self-confidence, self-esteem, a better understanding of what I need in my life, and courage. I became a more well-rounded individual.
CHAPTER 18
Sports as My Recovery
Looking back, I think the reason why I loved the stage project with Archeworks so much was because of the physical activity. I like to move, to challenge my body. When I was at the gym, I would watch people come in after me and leave before me. I was using standard barbells, cardio machines, and Smith machines, and I did things like crunches and squats. Even that wasn’t enough. I liked how exercise impacted me physically, but I also found it had a positive effect on my speech recovery. So, I took on golf, Pilates, boxing, and eventually, yoga.
After my experience with the golf pro in Scottsdale, I had kept the idea of playing golf in the back of my mind. I had even called RIC to see if they offered any sort of golf program. In February of 2008, I learned that the head of the sports program at RIC in the city was Patrick Byrne. I thought, This could be a new way to build new neural pathways to help my speech, plus make new friends, if I can get to the point where I can play. And after a little more consideration, I called him directly.
“You’re teaching stroke people to golf, right?” I asked him.
“Yeah, I’m doing it right now. I’m teaching people who have had strokes and people who have cerebral palsy and Parkinson’s disease. What do you have?” he asked, in response.
“I experienced a stroke,” I explained as well as I could. “Two years.” My speech was slow, and I had to pause several times to try to find the right words to express myself. “I aphasia . . . ummm . . . hard . . . ummm . . . understand . . .” I apologized. He was patient, as I further explained that the right side of my body was paralyzed, and that I was trying to get my physical body to where it was before my stroke.
Patrick replied, “I understand enough. I think you should try this. We’re practicing tomorrow night at the range near RIC in the city; come down, and I’ll tell you if you can play or if you can’t.”
At the time, I was learning to formulate sentences, remembering idioms, and moving up from using simple phrases. I was getting into golf, and I needed another “dictionary” for my new golf vocabulary.
I met Patrick and the rest of the group the next night at the driving range. When I walked up to shake his hand, I marveled again at the fact that Patrick was the head of the sports program and a highly respected golfer, despite the fact that he had only one leg. Wow . . . this is a guy who is calm. He lives a normal life and has a job as an instructor to teach people, with disabilities and without, to golf. Now that is an inspiration!
When it was my turn to practice my swing, I swatted the ball and hit it. This time, my waist moved. I knew I could do this, because now I knew what the concepts coordination and integration of my body meant, and I could apply them. Before, I hadn’t comprehended that my entire body had to move as one unit; it was something I’d been teaching myself. For a split s
econd, I thought about my high school days, playing basketball, football, and baseball. It’s awful, I thought. The stroke took it all away. All those skills that I worked so hard to hone . . . they’re all gone. Now I have to relearn all of it. It was sad. I was depressed by the thought, but I had to get beyond it so I could play sports again.
After I swatted five balls, Patrick said, “You have to tell me where your stroke disability is coming from. You’re hitting balls two hundred yards! It’s not coming from your right side. So where is it?” I explained the left-brain versus right-brain concept and how I used to be right-handed and that I was working out four or five times a week. He smiled. “You will not have any problems hitting golf balls.”
There were eight or nine other players. There was a guy with cerebral palsy, a guy with Parkinson’s, and another guy who also had a stroke. The rest had other forms of disabilities. Not only were we dealing with physical deficiencies, but we were also contending with various levels of speech proficiency. Above all that, these were people who had a lot of emotional and psychological issues to deal with. That became clear quite quickly.
“All right, just a nice easy swing and follow-through,” Patrick told one of the other players who was preparing to drive the ball. His swing was not overly smooth, and that meant that his drive didn’t go too far. The guy stopped and slammed the club into the ground. Patrick had to calm him down.
I wasn’t invincible to troubles on the course, by any means.
“We’ll let you take a turn driving the cart today,” Patrick told me at the start of one round. He handed me the key and told me to follow him. He jumped in another cart and started down the path. I had to press a lever to make it go in reverse. Before my stroke I knew that, but now I didn’t remember. I messed it up. I couldn’t remember how to go back. So, my foot pressed the accelerator, and I hit the back of Patrick’s cart.
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