12 Days of Tap 2019: Day 8
– Ken and Beth Corsbie –
When I first received an invitation to the annual “Gimistory” storytelling festival in the Cayman Islands, I didn’t want to go and I told TAP that I didn’t want to go. I had told stories there 21 times and I didn’t want to go and not be able to perform the way I did before. Peter, one of the group members, said he would treat it as an opportunity to tell people about aphasia and it stuck in my brain. I thought, well, I can do it for TAP. I was concerned about the physical aspects of travel, but I was assured that the airlines would help with the wheelchair. I was still afraid of travel.
I didn’t want to go but decided I would go and show them. People might have never heard of aphasia and I could introduce it to them. My wife agreed to help introduce me. My friend Henry, the Director of the Cayman National Culture Foundation, had said all along that I need not tell. Henry and I had worked together in the 1970’s and travelled throughout the West Indies performing Caribbean poetry. I chose 6 or seven poems to work on if I did decide to tell.
I was pleased that my fellow storytellers and the audiences treated me like royalty. These international tellers kept encouraging me. One of the tellers has a son with aphasia and she spoke about how I inspired her.
When we decided to go, my wife quickly arranged travel. We were so impressed by the assistance that the airlines provided with the wheelchair, meeting every flight and providing help with connections, and to the front of the line for customs. With the amount of people with stroke, it is important to know that wonderful assistance is provided. This was one of the things that was holding me back from travel. Having gotten the wheelchair, we were met by the director of CNCF.
The first night we went to a review type play that a version has been going on for about 25 years. We stayed at a good friend. The next night we went to a party at the home of a good friend and that is when I was permitted my first performance. This was very softly, I was so nervous about performing, but here at the end of it, the audience gave me a great response. This was probably the first time they were hearing someone with aphasia. I knew then that I would try to tell every night of the festival. For the next two nights, I tried but was nervous. The audience gave tremendous and spontaneous applause. There was improvement all of the time. Everyday I got an hour or two of rehearsal in locations such as the beach that we went to everyday.
From day one down to the end, and all the while we were there, there was improvement all of the time. Why I went there was because of TAP and the encouragement of my colleagues.
Despite the daily struggles involved in living with a loved one who has had a stroke, probably the main thing that brings tears to the eyes of a spouse is the knowledge that close friends and new acquaintances don’t “see” the person beyond the disability, but rather look away to avoid discomfort with difficult communication and often avoid the stroke survivor altogether. In addition to the “Speaking Aphasia” programs offered by TAP, the affirmation of self through social interaction is an important part of the support TAP groups provide. I have observed the highly skilled SLPs engage members and observed group members support one another through their communication challenges. The community of support provide by TAP has been important for Ken and me as we continue this journey together. TAP provides an opportunity for family members to sit with one another. When we look into each other’s eyes, we know that they know about the everyday ups and downs in supporting a family member with aphasia.
Ken is a dramatist, storyteller and poetry performer well known throughout the English-speaking Caribbean. His career has been formed by creative and clever uses of language. His stroke in May 2018 has required him to relearn to speak as well as to find new ways to communicate. And yes, that course in mime in drama school does have a purpose. Ken has been encouraged by TAP to continue working on speaking and communicating. He looks forward to the groups he attends, and the encouragement provided by his fellow TAP members and SLPs.
With the encouragement of TAP friends, Ken and I went to the Cayman Islands “Gimistory” storytelling festival. Ken helped instigate the festival, some 22 years ago and has been a featured teller at all of the festivals. When the director of the Cayman Island Culture Foundation and longtime friend called to invite Ken to Gimistory for 2019, he said Ken would not be required to tell unless he felt up to it, he could just be there and be venerable. We debated about going and declined the invitation thinking that the travel would be too difficult, and it would be better to have Cayman remember him for his previous performances.
At the last minute we decided to go. We discussed the importance of making people aware of aphasia and the possibility of performing some short Caribbean poems that Ken had been working on and had performed for his TAP groups. Ken was determined to perform at Gimistory and worked several hours each day in preparation. At the first performance, Ken performed a poem with a longtime friend and calypsonian. His courage and dogged determination brought his close friends to tears. He was among Caribbean artists who love him and revere his contributions to Caribbean theatre and culture. The week of Gimistory was a celebration of life with aphasia as well as transformation and improvement through dogged determination, hard work and no fear.
At each of the performances, I walked with Ken on stage and prepared the audience with “Ken and I have been coming to Gimistory for more than 20 years. Many of you have grown up hearing Ken tell stories at Gimistory every year. In May 2018, Ken had a stroke. How many of you know someone who has had a stroke? [Nearly everyone in the audience raised their hand.] You may know that sometimes stroke affects language, but not intellect. This is called aphasia. Ken has aphasia so he has had to learn to speak, read and write again. So he will be using a script tonight. Ken wants to share some of his favorite poems from some of his favorite poets and friends.” Ken was embraced as “Caribbean theatre royalty” and in addition to a warm response from the audience received accolades from longtime friends and well-known Caribbean artists who know and “see” Ken.
Throughout the trip to Cayman, we were thinking of TAP and anxious to share our experience with the group who has been so supportive an encouraging. On the final performance, Ken wore his TapTastics t-shirt in tribute to the group that has walked with us on this journey.
We are grateful for TAP and the resources provided to our community of stroke survivors, their families and friends. TAP is a special and important resource and we celebrate the incredible and unique work that TAP continues to do.
From the TAP Home Office:
Beth and Ken were the first 2019 nominees to say an emphatic “YES” when we asked them if they would share their aphasia story for this year’s 12 Days of TAP. They would need to wait, however, as they were in the Caribbean at a StoryTeller’s event that…well, I won’t steal their thunder. Read the story and hear how this legend made a remarkable return worth every accolade he earned! Further, hear how a care partner, a wife, learns to encourage, support and gently nudge in the pursuit of all goals.
Thank you, Beth and Ken, for this story, these pictures and the video that brings us right along with you! We are so grateful for your generosity.