Speech is Bad; SPACE is Good

Her Highness and I walked early. It wasn’t raining, but it was foggy, damp and cool. I kept the fire roaring because I thought that it was Sunday. I was certain that it was My Day. I said so in yesterday’s post. I was shocked to realize that it was Saturday yesterday.

The morning was spent reading book two of the DI Ryan Wilkins series by Simon Mason. My God, I am loving these books. I guess I’ll be going back to detective mysteries again. I shall hunt down books by Martin Walker that I have not yet read. But when I wasn’t reading, I was emailing back and forth with Aidan. 

It's clear that my role is starting to become clear: Memberships, fundraising and communications. It’s a perfect fit for me. Aidan has sent me many documents to review, and I have a long list of things to do for homework. I can tell Aidan is happy to have found someone so keen to work. Part of my brain that was ‘dead’ is coming back to life; what I mean is that I’m becoming the person I was when I was an arts advocate.

I went into the village to order more puffers at the pharmacy. It was bitterly difficult to speak with the clerk. Normally, at the pharmacy, where I go so very often, I can speak easily. I was frustrated and disappointed. Then, when Her Highness and I went for our afternoon walk, we came upon François with whom I am always fluent. I love the guy. But I could barely speak to him. He invited me to join him as he walked Clovis and Walnut, but I declined because it was going to kill me to speak so poorly with him. 

Something is wrong, but I don’t care. Not speaking is not dying. It’s an inconvenience, not anything dangerous. How my attitude and response to poor speech have changed for the better.

And speaking of something wrong, you should have seen the pyrotechnics in my microwave last night. I was melting butter in a ceramic dish when there were bolts of white light like when a transformer goes wonky. I stopped the device and then started it again and it worked, but now I am scared to use it. 

I think a lot about SPACE when I am not reading, so I was delighted when Aidan proposed another chat. We are Zooming on Monday, so that drove more thinking and, just before I started watching a movie, I don’t know what I did. I texted him, or I messaged him, DM’d him; I am having to learn a lot of new language as Aidan drags me into this world of instant communication. I honestly don’t know what the right word is for how I sent text to him, but I sent him a bunch of questions about his budget and that led to a lot of back and forth of whatever it was we were doing.

One of the reasons I love Aidan is because I see myself in him. (Does that make me a narcissist?) He reminds me of myself because for many years I had ideas and I would get funding for them and find supporters and donors in order to make my ideas come to life. This is a world I know well, and talking non-profit operations and strategies with Aidan is the most fun I’ve had in ages.

Now…finally…it is My Day, my weekly day of permitted self-indulgence. The fact is, though, My Day is not much unlike every other day. If I was inclined, My Day would be a day for sweets, but I’m off sweets. I still want them, but I won’t eat them. I don’t want to gain weight now that my asthma is so bad.

It’s a dull day today. We’ll walk, I’ll read and time will pass pleasantly. The fire will roar, bread will be made, the electric blanket will be turned on, and Simon Mason will make me very happy. I’ll finish book two today.

Every Day is the Same

Friday, we walked with our friends in the 707. Both my asthma and my bone spurs made the going a bit of a challenge. But it was a lovely long and dry walk. Then we came home and I read until lunch time, and then after lunch, I had my appointment with Dr. Shoja.

When I finished with Dr. S., Her Highness and I went to Elder Cedar to walk, and the stream is finally running through the park. As we drove home, the sky clouded over. Damn. The rest of the day was so wonderful, but we are going back to rain today.

I’m a lucky fellow in that I sleep so easily and well. I’m very good at sleeping, and I am not keen to get up in the mornings. With the first contact with the floor, my bone spur foot starts burning; every day, life begins with pain and I’m sick of it. Sadly, however, there is nothing to be done. 

My NP said that she’s arrange for me to get a shot. That was months ago and I’ve heard nothing. When the time comes to see her again, I shall ask her if she did, in fact, send a referral out for me. Neither have I heard from St. Paul’s about seeing my HIV doc. I need a prescription for blood tests and my old HIV doc retired. My NP was, according to St. Paul’s, sent a letter advising me to send a referral to transfer me to the new doc, but she never got the letter. Both issues may have to be resolved with a visit to see her. 

I can’t believe how badly our health system is working. It’s not the fault of the medical profession; it’s the government’s poor future planning. One must be diligent now to get the health care one needs. Self-advocacy is essential. 

When I went out for wood to light the fire at 5:30 this morning, I felt the cold like a knife through my body, and all I wanted to do was get inside and bundle up under the electric blanket and read. I hate being cold. Since today is My Day, if I want to spend it under the blanket, I shall. But Her Highness will, of course, be walked.

Walking in the Rain

Waterproof coat with hood, rubber rain pants, gumboots that hurt my foot, and gloves protected me from the elements as we took our morning walk on a very wet, foggy and gloomy morning. As was said by the CEO of Mountain Equipment Co0op: “There is no bad weather, there’s only bad clothing.” I have the right clothing and so I stay warm and dry. Still, it felt great to come home into a warm and cozy house to read the second book of Simon Mason’s DI Ryan Wilkins series.

It was lovely to have the entire day to myself. I had no appointment, nor did I choose to bake or cook anything. I loved being under my electric blanket on my chaise, reading beside my big view window. Seeing the rain fall makes me cozier, plus I get to see what’s going on in the hood.

It was an entirely uneventful day spent entirely at home except for two short walks in the rain in the 707 Park. Today will be more interesting because we walk with our friends, it’s clear and brisk, so our walks will be longer and uplifting in the sunshine. Plus, I see Dr. Shoja today.

It’s going to be a great day because of the abundance of glorious sunshine. The next five days will be the last days of the spa season. Come Tuesday, when there is a prediction for sunshine again, I will drain the spa and count the days until Springtime. 

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.