Dwight and I went to Ground Up for breakfast yesterday. It’s the new café that has replaced Robert’s Café. It’s fabulous! It’s a tad expensive but the food is great and everything—everything!—is clean. It’s great to have a new and healthy place to eat.
I always feel odd after a guest leaves. I feel numb and very tired afterwards. However, after a good night’s sleep, I wake up in comfort; everything feels back to normal. Having a guest is passionately desired but it can feel for me like being exposed to radiation. How sad is that? I’ll keep going through it because it’s so wonderful to have friends. It is, however, a draining experience.
The socializing I value the most is my U.K. FND group. I experienced the best session yet yesterday. We gained a new member; her name is Nicola. It was awesome being part of a small team of peers who focused on her for our entire session. We asked her questions, and I was a bit of a star, I say most humbly, in that I gave her lots of communication strategies that I have adopted: using a speech app on my iPad, arranging with stores, banks, and other services, for a designated sales clerk and/or cashier, and carrying a business card like mine that serves me so well. We shared horror stories of being assumed to be simple, or thought to be joking, or shamed. There were tears.
The biggest difference between me and all the other people in the group is that I am the only one who is single. I’ve had to learn how to function with a severe speech disorder on my own. I’ve had friends to help me, but I have been most reliant on writing things out ahead of a conversation with clerks, bureaucrats, doctors, etc. I am prepared with text, and then cut and paste into the text function of Zoom. It’s simple to respond to questions.
My fellow FNDers all have partners, and sometimes children living with them. They also have occupational and speech therapists. I don’t. But I was provided with a psychiatrist who has guided and inspired my self education over the years. She gave me knowledge of how FND works in my body. I have had to learn on my own, how to live with it. My FND friends, have had a few hours with a neurologist; most of their time is spent with occupational and speech therapies.
I seem to be the only member of our group that has researched FND online. Dr. Shoja has provoked constant scholarship on FND over the years. Her teaching and my participation in stuttering organizations, and the academic/medical stream of online stuttering conferences, has me able to bring thoughtful questions to our or STAMMA FND sessions. And my experience during the process of adapting to living with the condition has led to my having a leadership position in our group. I’m the person in the group with the earliest FND diagnosis. My experience and all the incredible conversations with Dr. Shoja have taught me a lot. I’ve learned a lot to share.
I kept the focus on Nicola. I asked her blunt questions. Honest personal questions about her life and how she was coping. I brought other people in, acting like a chairperson committed to hearing every voice. I felt like camp leader, but I didn’t set out to be anything.
In September we celebrate a year of online sessions together. Yesterday’s session was, I think a fulfilling session for everyone. There were the tears, and there were passionate thanks expressed to our convener, a speech therapist. We love our session. I really love them. They are my new Dr. Shoja. My new safe place. Nothing like ‘community.’
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