I just finished my conversation at the cat trikes booth when she rolled up beside me. She took out a handheld device and after a few taps, she had initiated a conversation with the employee I had just been speaking with. Thinking I knew how slow these devices can be, I waved goodbye and walked across the way to another vendor. I returned to my own table. Kat and I had been staffing it from the cold foggy morning to the sunny hot afternoon. We were both amazed at the number of people who stopped at our booth to chat. Many had Parkinson’s or knew someone with Parkinson’s. We had sent our care partners Ken and Charlie to retrieve an awning to shade the afternoon sun. They had set it up in my absence. In the late afternoon, Kat and Ken left. By that time the woman with the wheelchair made it to our booth. She rolled up, escorted by a handsome fellow who I soon learned was her husband. Immediately she tapped her device and said: “Hi, I am Andi”. Thinking the conversation would be slow I stood up, grabbed my chair and took it around to the other side of the table to sit next to her “ Hi, I am Carol. I think I saw you down at the Cat trike booth. Do you have one?”
She took the conversation to a higher level by telling me some people get so depressed, because of their disability. She tries to keep it upbeat. From what I could see she is doing a good job.
We talked for over an hour. I learned she holds a master’s degree in Disability Studies, works at a bank and is the vice-president of an organization that fights for the rights of disabled people. Involvement with people with disabilities is her passion
Our conversation was not slow at all. I threw questions at her right and left. I was amazed at how well I understood her answers. With her body language, vocal inflection, vibrant face and speedy use of the communication system on her phone (which I learned that her husband programmed for her) I was able to learn many things in a short period of time.
Andi has dystonia. She told me it’s much like Parkinson’s. I looked it up: a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.
She was diagnosed as a little girl. Deep Brain Stimulation helped her, but as an after effect stole her voice. Her body is twisted from the dystonia. But her strong heart, peaceful soul and her passion for life were very apparent for me. It made me want to talk with her for days at a time. There was so much to learn from her. I said “I think I have just found a new best friend. “ She reached over and gave me a tight hug and a kiss on my cheek.
In the days since our meeting, I have overwhelmed her with my numerous emails. Some have had humorous tones meant to trick her into telling me more about herself.
Do you have any secret powers? Or maybe a special talent as a sound engineer with a studio in your basement?
Have you been a keynote speaker at a conference? Written? Done research? I am sure you have not been hiding your brilliant mind behind stacks of dollar bills at the bank. What do you do to share it?
Andi answered my questions with carefully chosen words. I hope she realizes that our time together was too short for me to get to know enough about her. Perhaps for her “enough is too much.”
Time will certainly tell about that. But honestly, I am glad for the short time spent with such an amazing human being.