Nightime Ramblin'

After a busy, busy day on Tuesday, I was very happy to get into bed Tuesday evening. I read for a while and then turned off the light and went to sleep quickly at 22:00. Unfortunately, I woke up at 2:45 and I couldn’t go back to sleep. I didn’t get up; I stayed in bed until 4:30 when I couldn’t stand it anymore and I got up. So, yesterday began very early. It was going to be a long day.

It was another nasty day. It wasn’t raining in the morning, but everything was soaking wet and it was dark. It was a day for a big fire and starting book two by Simon Mason. But first came walking with our friends in the cool wet weather. Sitting at home in advance of the walk, I don’t want to go. But once warmed up from walking a little, my joy for walking in the forest, regardless of the weather, burst forth in my soul. 

There was one disaster our walk. Sheba walks free; she is not leashed where we walk. Most of our dogs on are off-leash and it’s allowed on the trails where we walk. Suddenly as we walked yesterday, I noticed Sheba was missing. It had never ever happened before; she always stays right close to me. I called out. Nothing. I started retracing our steps and calling out for her, and there she was, her mouth coloured with shit. She’d found human feces and eaten it. It revolted me. I gave her mouth a good cleaning when we got home.

Yes, it felt very good to come home to the fire and wonderfully warm air, but it also felt fulfilling to have taken Her Highness for a good long walk before leaving her alone while I went to Lynn and Hugh’s for lunch. I barely know them, but they both were very easy to be with. I really enjoy their company. I’m going to invite them here sometime soon to dine with me and Ian and François. I think we’d be a good mix.

One thing that impressed me about them was when and how they asked me about my seizures and what to do. Others have asked in the past, and it’s always when the people are new friends, and it makes me respect them. I don’t disrespect those who don’t ask, but I can’t help but respect those who do ask, especially as Hugh and Lynn did today.

In April of the coming year, I will begin my eleventh year with C-PTSD and FND. For ten years I’ve been a disabled person with symptoms I can’t conceal. Yes, there have been challenges; the first year was brutal, the second was tough. Near the end of that second year, however, I moved here, to Gabriola.

I can very honestly say that I feel very, very good about being disabled and living in self-imposed house arrest (with occasional liberty passes). The reason I can say I feel good about my disability is because I’ve never felt such warmth from people as I do now. People are incredibly nice to me. Phoebe, who works in the deli in Nester’s, always comes out to hug me when she sees me in the store. She wants to serve me. She told her colleagues right in front of me, that she wanted to always be the person to serve me if she’s on shift when I am there. (Don’t forget, this is all when I am mute.)

In 1975, I was in a play called Creeps. As part of pre-production, many company members went to a physical re-hab centre to meet people with Cerebral Palsy (CP) who had complex physical disabilities. The actors wanted to learn how to honour the characters in the play with realistic physical performances. The play was incredible. It was about a group of men with CP who live in a support facility. It was written by David Freedman who had CP; he typed the script with a pencil in his mouth.

A friend of Connie’s had a son my age who had CP. When our mothers socialized, we developed a friendship. One day, we were talking, and something I said hurt him, and he said to me, “You have no idea what my life is like. You have no idea how people look at me.” Our friendship changed, and for the better, after that. I asked him he interpreted how people saw him, and we never stopped talking about his life a lot. We stopped just tolerating each other and goofing around.

Now I have visible symptoms: the bad speech, always; the seizures episodically. I got off lucky compared to Daniel who lived in a wheelchair and had spasticity throughout his body. My experience is the opposite to Daniel’s.  

When I present, mute, in a store, everyone I encounter snaps-to and is there for me. We’re in a real world together where I need their help and they want to give it. I was a bastard in the eyes of the church that ran the orphanage that I was in, and then, unwanted by the Tyrells. And I had to flee my beloved church because I knew I was (closeted) gay and my church condemned gay people. 

How things. Have changed! Living here, there is true community where I see the same clerks a several days of the week at Nester’s and run into people I know, where we have our own Facebook pages giving each of us a voice on island issues, and where people fed my pets, watered my gardens, and filled my place with food when I came home from my heart attack.

I feel safe here, it’s the best medicine for my condition. I did not expect all the kindness and incredible co-operation I get from people when I need something but can’t speak. Honestly, the kindness I get in that Deli at Nester’s makes me cry to write about it. I know it’s because I’m mute. How can I feel bad about my poor speech when it makes people treat me with palpable kindness?

Now, I’m being embraced by this incredible organization, SPACE. It has an expansive network of people who stutter or who study or treat dysfluency, and who are all dedicated to the mandate of SPACE. The mission of SPACE is: “SPACE created a more inclusive and accessible world for people who stutter through arts, education and advocacy.”

Also, on the page with the mission is this: “We are the only organization founded on the philosophy that when we learn to listen better to people who stutter, we are learning to listen better to everyone.”

What I think I am doing is driving the development of infrastructure for the organization: membership, fundraising, communication strategies. They seem to have been focusing on projects. My emerging focus for my volunteering is the result of questions I’ve asked Aidan about SPACE, and his responses. I had no plan for involvement. This is all the result of him coming here to meet me, and the conversations that grew from that visit.

I have found a community in SPACE; it’s another place where my disability is making my life better. What it is, is a safe place to participate on Zoom and in an online chat community on What’s App. Me. On What’s App. Pigs are flying. Plus, SPACE hosts events. It is an extremely welcoming community of people. My story on the Library of SPACE is earning me kudos. It’s served me well by way of introduction.

I’m feeling a lot of love. Me, the guy who didn’t get any growing up. Me, the guy who’s soon to be 78. Fuck. Fuck. It’s frightening to push the needle on the clock another notch. But hey, more importantly, I’m feelin’ the love.