My Life with Functional Neurological Disorder: The Festival Weekend

This is Steve, my ex, dressed for the Sound of Music Sing Along at the Hollywood Bowl.

He lives in LA, thrives on attention, and I love him.

As time passes, I learn more and more about how FND has changed me.

When I met Marleen, my friend Julien’s partner, at the end of our single day together, when it came time to say goodbye, I hugged her and told her I loved her. My first thought about my impulsive confession, was about Lynn Willingdon. We were both in grade five, and one day “I love you” came tumbling out of my mouth, entirely spontaneously. I felt like I had wet myself, I was so embarrassed. When Kris’s daughter came to visit Kris and Steve from her home in Switzerland. I was insanely smitten with her after one short evening together. It’s intense these ‘crushes’ I experience.

They don’t bother me. I’m not embarrassed by my actions, and I felt my passionate declaration pleased Marleen. She said she loved me too. At the festival technical rehearsal, I arrived at the entrance at the auditorium to find technicians jiggering with lighting equipment and just a few people scattered about. Then I heard someone call my name. It was a woman sitting near the back of the hall. So, I went to her.

She introduced herself as Sara, and she told me that she had seen my monologue when I did it in June. When Dwight and I left the venue to return to Vancouver, I knew that Sarah was a big part of my enthusiasm for the festival experience.

When we got home, I fell asleep for much of the movie Dwight and I were watching. And last night I was comatose for a long, long sleep. I’ve always had strong emotional responses to beauty, whether that’s a person (inside and out must both shine), flowers, the arts, plays and performances, etc., but my emotions are much much more intense now, and they exhaust me. My weekend was emotionally overwhelming.

I’ll start at the beginning and tell you all.

Driving south down the main highway of the big island was intoxicating. It was a beautiful, beautiful day, and we were not in a hurry. My tech rehearsal was not until 6:00. I used cruise control to drive the highway. It was heaven. I felt stoned on the rush of being on holiday. We stopped at Goldstream Park and had a nice long walk together. She is rarely leashed because everywhere here is off-leash except the provincial parks. She is 100% co-operative on the lead.

The river ran gently because of the current drought, but it is a site that attracts thousands of people each year during the salmon run. But it’s a lovely place to walk. The trails are highly groomed. and the landscape is fascinating because it ends in a flood plain.

We went directly to Fisherman’s Wharf for lunch. Sheba ate in the car, and I went down on the docks and had fish tacos—a favourite—on the dock. From there, we went to Beacon Hill Park to have a good long walk together in the glorious sunshine overlooking the sea in an off-leash area of the park. I love going there. We meet lots of lovely dogs and their owners and there’s often a nice fragrant soft wind keeping us cool.

And we had a nap together in the shade in the van, and I read while Sheba slept. At 5:00, we left for the venue where I found a free parking space less than a block away. I got a suchi roll from a place I had been to before and went to the tech and met Sara. (See above.)

This is amateur theatre. My first experience. It’s been entirely fabulous. They were slow getting things started. I cared not. But when it was time to get started, I was the first one up because I was the first act. So I was there for roughly 6 minutes of work, then I went to Jess and Todd’s place.

Todd is like a little brother to me. I delight in his company. I trust, love and respect him. He is married to Jess. I met Jess when she was 2. She would come to visit for overnight visits through much of her early adult life. She’s like a favourite niece in my heart. Their first born is profoundly disabled. She cannot speak, walk (without support), and can only eat fluids. We’ve often vacationed together and they feel like I might feel about a family.

Todd is a clever young man. He bought a building beside the house he and Hess were renting in Cadborough Bay in Victoria. The house had several apartments, all rented by students attending the nearby University of Victoria. The rent paid the mortgage. Todd wrote to the owner of the adjoining property that opened, in part, onto the park and beach at Cadborough Bay. Recently they sold the two lots to a developer for a windfall. Three months ago, they moved into a mansion of a house on the hill overlooking Cadborough Bay. Sheba and I had a private suite.

It was glorious being with them in their new home, and my heart pounded with joy and pride in all they have done to win the game and have a secure financial future for them and their daughter. It is beautifully landscaped and there’s an irrigation system, and they live in a magnificent grand room that is the kitchen, dining room and living room. It’s a magnificent home, and there’s a gas fireplace to sit around and it came with a Rolls Royce of a barbeque.

Friday morning, Jess went to work, and Todd, Sheba and I walked down to a beach below their place with folding chairs to sit on. We chatted together there for about an hour and a half and then we headed into the village for a sushi lunch. After lunch we got Sheba from the can and walked to a nearby trail that wove up through a ravine. It is a lovely urban park that students use to walk from the Caborough Bay village to the campus.

It was lovely walking through U Vic’s campus and seeing all the students taking in the sun on the lawns. It’s a beautiful park-like campus and the students looked like flowers as they sat and talked in their bright summer clothing. We took a different trail down and then went back to the house and I sat on a very comfortable chair on their front porch overlooking the sea, warmed by a late Summer sun. Heaven.

I left the house at 4:00 to go back to Beacon Hill dog park for a nice long walk in the sunshine while I ran lines in my head. Then we went to the venue where I fed Her Highness and gave her water so that she’s settle down on the bed and sleep while I did my first show.

I love theatre passionately. I was a theatre administrator and programmer, but I rarely performed. I stank as an actor. I found a way in by becoming a regular story teller for a performance series called The Flame, and doing 2 one man shows about periods in my life. I absolutely love doing it. Performers often talk of nervousness before a show. I have absolutely no fear. I love public story telling.

Our show began with an informal and warm introduction from Heldor, our producer and artistic director. When he started speaking, that was my que to go onstage and sit on the stool downstage centre. Sitting on the stool, alone in the dark, was how it might feel to be looking at the heroin boiling in the spoon as you’re biting the rubber and pulling it tight before the rush.

When the curtains opened, I said this: “The human voice. We all know what it’s for. But what you may not know, is how great a part it plays in your sense of identity.” It takes me a minute or more to say that to the audience from the stool. I am in full blown stutter with blocks.

Then I stood up and did the monologue perfectly—until about 12-minute mark, when I blanked. I closed my eyes and was silent for a full minute or more, and then I found a place and continued to the end. When I finished, I did a slight nod to the audience, and they started applauding and I bolted offstage. I love performing, but I’m extremely uncomfortable with applause and compliments from people afterwards. I become mute often. I love performing, but I am very shy as well.

Jess and Todd told me many in the audience stood up and that there was a lot of cheering. That was nice to hear. It made me feel proud. I feel good for them, too. I like that I gave a little thrill to people and made them forget about our sordid world.

I grabbed my stuff from the green room and went into the corridor where Todd and Jess were waiting, and we went to dinner and a nice seaside hotel in Oak Bay. It was really, really nice to laugh and chat together. Plus, this Jessica I love so much, is the daughter of a woman and life-long friend who went ballistic on me in an angry tirage about me and FND. We haven’t spoken since. So, Jess and I talked a lot about that, partly at dinner, and again on Saturday.

Saturday morning, we went for breakfast together at a lovely little neighbourhood bistro, and then I said goodbye and went to the park for another beach-side walk with Sheeb before going to the venue. Get this: I got a free parking spot right across the street from the front door, and Dwight was there waiting.

Dwight and I talk every week at least once and often several times. We are each other’s confident. He had three brothers and only very rarely sees any of them. I think we are each other’s surrogate brother, so I felt on very safe ground in his company. We hung out before the show, and Don and Fernando arrived, as did Merrill, the wonder woman who used to live next door to me. Mother of beloved Issa.

Once assembled, we all sat together in the auditorium and chatted, and then I left to go backstage. Forgive the bravado, but I nailed it. I have never done that before. I have never once felt worthy of saying I did a good show of this monologue. Now I can. I’ve been writing forever and the only ones that brought me pride were the ones that I worked on the most.

First, I wrote it, then, as I was memorizing it over a very long period of time (it’s 1800 words), I refined it. Then I practiced it aloud a bajillion times and making more refinements. I’ve never worked so hard on a text in my life. Had I been doing this for a client, I could buy a house near Jess and Todd. It was an unbelievable number of hours in the doing.

What’s new for me is being proud, too, of my delivery. I varied the pace, a was low and took mini breaks in places, is moved around slightly and liked presenting sometimes in profile. I made it colorful and came as close to acting as I ever hope to come. And I stayed for the rest of the shows. About 20 people came to speak to me at intermission to make lovely and heartfelt compliment. It thrills me that people are so moved. It also stuns me. I can’t believe it. I just wanted to entertain. I had no expectation of impact.

I am delighted to share that it was filmed, and Heldor is sending a video of my performance. It really excites me to be able to share my experience on video with friends, and the stuttering community, as well as people here on Gabriola Island. It may take a while to arrive. More to come.

Dwight, Sheba and I had a lovely ride home. We stopped once for a walkabout, and once we were on the ferry, we called Woodfire restaurant and were able to pick up a delicious pizza on the way home. The ride went by in seconds, having Dwight to talk with. We have our own world and it’s a thrilling place to be.

We rented Barbie after dinner, and I slept through most of it. The pizza was delicious. We went to Ground Up restaurant for breakfast, then he got on his bike and headed back to Vancouver via the Nanaimo ferry. I came home and watered all the plants. Many, poor things, were showing signs of severe thirst. They are all well now.

As are we all.

I have an idea for a second monologue to go with the first. If I could double the show running time to 40 minutes, I’d have a product to “sell” to stuttering conventions, and to do here in our Summer festival. The Human Voice, Parts I and II.

I’m excited.