Conversations 👎

You must see one in person to appreciate just how magnificent this bird is. It’s a Western Tanager and the colours are a bright as the sun. It’s been an exciting Spring so far, seeing Evening Grosbeaks and Western Tanagers often. And of course there are the Flickers, Pileated Woodpeckers, and all the other usual miracles visiting Pinecone Parks feeders, baths and fountains. 

I went to fitness yesterday. I was excited to be back and having been away for a while, I had lots of energy. I was really into it, and everything went well for the initial 45 minutes, but then I had a pretty powerful seizure. I rested for a while afterwards, and then went back to gently exercising, but I had another seizure, and the second one was bad, so I sat out the rest of the class. I was not functioning normally.

However, when I got home, a warm and wonderful welcome from Her Highness returned me to feeling good about life … almost. I was a walking zombie for the rest of the day. I didn’t have the focus to read, so I napped a lot and had a long spa, napping there as well. It wasn’t till dinner time that I felt human again. 

We had lunch, and then Ron came to walk Her Highness. I could barely talk to him. I was still a zombie. I moved slow when I wasn’t soaking or sleeping. Both Dwight and Steve FaceTimed me. It was extremely challenging to speak with them, but I thanked them for their habit of calling regularly and doing all the talking. I let them both know how much their calls and their patience mean to me. I also called the pharmacy using the Telus Relay Service. What an incredible asset that service is for me!

•

Being mute is terribly isolating. I function with my Boogie Board, gesture and the odd single word. But there’s no more of a part of living I loved—vivid conversations. My friend David van Berckel was a particularly delightful to conversational partner. He had a crisp mind and from nothing, he built himself a mini commercial empire. We shared years of conversation over the run of our friendship.

And Karen. A conversation amongst us thespians would be bubbling along, and suddenly I’d hear, “That’s not right. That’s not ….” And away she’d go. She was a lawyer. She passed away a few years ago and I miss her deeply. She and her husband, Robert, once worked for me. We’ve been friends since the 1970s. What a loved about Karen, was she was an effective debater. (And I was in the debate team of my high school.) The thing about Karen, with us, was she would argue things, but she was smiling with genuine warmth through the exercise of proving something was incorrect. It was thrilling to be in her company.

Beth, Bruce, Dwight, John and Bunny, Dianne and her posse, we all talk comfortably together. But what made my conversations with David so valuable came from his knowledge and experience. We often talked about ethics and faith, and I’ve always loved insightful discussion of those issues. And Karen knew law. That made her a very interesting conversationalist. Plus, she was just captivating to watch and to hear. I could see her in court as she did her thing.

I’m stuck with phrases and short sentences with friends, otherwise I am mute, and I have no right to believe I will get better. It’s been a slow decline since the onset of speech problems. That’s a span of 8 years. Discussion like I once had, are over. This blog is where I have my conversations.

Sheba and I are going to visit friends—Dianne, Jane, Dana, and hopefully Dianne’s daughter Ashlee and her man, Alex. Alex and Ashlee became engaged last week in Venice—on the coast of the big island where Dianne rents a cabin every Summer. I’m inclined to get the little computer with the keyboard back from CAYA, for backup.

I’m scared that I’m going to lose my voice with friends. It’s a valid concern; I am not an alarmist. Thankfully, I have devices and devoted friends. That keeps me calm. Still, I worry, and the minute it comes up in my mind, I ricochet away from the thought for fear that might somehow make things worse. Time will tell. There’s naught I can do. I am ‘rolling with it’ to see what happens.

There’s a plus side. I won’t have as many physical symptoms, if any. It’s speaking that brings on the firestorm of jerks, twists, bobs and so on. When I speak, it can be quite physical with some people, and not with others. I’ll still have seizures, otherwise, I will present as a ‘normal’ person who cannot speak. When I speak, I see the daughter of Connie Tyrell’s friend. The daughter had CP. I feel I’m her when I’m talking when my physical symptoms kick in, and I feel embarrassed about my condition.

I see Dr. Shoja in two weeks. I’m eager to hear all she has to say and propose.

And to close with a laugh…. Fecal Marjorie Taylor Green went to the beach and people there spelled out what they thought of her. Loath the human garbage; love those spellers! 

Speech Analysis

 We walked on Saturday, I puttered and fertilized some of the garden beds before going into the village to meet Darryl, a new acquaintance, for lunch.  Ron came by at 1:00 and he took Sheba for a nice long trail walk while I was with Darryl. I drove Darryl home (at the south end of the island) and I got home just a few minutes before Ron and Sheba arrived home.

In the afternoon I fertilized some of the garden beds, and puttered around the garden, and then I came in to read until it was dinner time. We all ate late and then I watched some TV and we all went to bed early. 

Sunday morning Fred woke me up early; I was up at 5:00 on a wet cool morning. I lit a fire, and we all had our breakfast and then Sheba and I went for a nice long trail walk. The recent rains have everything growing furiously. It was spectacular to be out on an iffy morning. No one was on the trails; we had the whole park to ourselves. 

The wild Roses are blooming, the Blackberries are showing their big white stars, the Ocean Spray is about to burst into bloom, and there are a bazillion little gorgeous tiny pink, blue and purple flowers on the wild ground covers. It is a really beautiful time to take walkabouts in the forest. Sadly, the rain and wind has damaged my magnificent Clematis that’s in bloom at the end of my deck.

Sunday afternoon the sun returned, so Her Highness and I

• 

I’ve been analyzing my speech because it’s become so hard for me. When I asked Dr. Shoja if she might know why my condition is getting worse, her response was one of immediate and strong interest. She was eager to discuss the problem, but we had run out of time in our last meeting, so it’s the subject of our next session. Here is what I’ve written for her when we next meet:

There are the strangers I meet on the trails; with them I am fluent as long as things stay superficial. If they ask a personal question, my speech will start to become a problem.

The clerks in the stores. I self-serve and only talk to cashiers. I have become friendly with Bernadette, Jean, and Kelly. With them I can speak quite well. I tend to use single words or short phrases. I use my Boogie Board to ask questions.

Friends on the island. With these people I tend to have more difficulties.

With closer friends in the island. This is usually about having dinner together. For the first 20 minutes, my speech is very poor. After half-an-hour, I can be doing okay.

With friends on FaceTime or Zoom, I can participate but it’s very rough going.

With Dwight and Steve, via FaceTime or Zoom, it’s impossibly difficult to speak. I say single words or one word at a time very, very slowly. They are my closest friends.

Off island, out in the world, I am mute. I gesture and I use my Boogie Board.

 

All these categories of difficulty with speech can shift to the worse on a day when I’ve done a lot of physical labour, or if I’m tired, stressed, in pain, etc. The weather can affect me, noise, lights, other people, many variants mean that I never know what is going to happen until I open my mouth, every time I enter a new environment/situation.

What troubles me is the ‘illogical’ contrast between being fluent with strangers on the trail, and almost totally dysfunctional with my best friends who’ve been like brothers to me for 45 years. It seems to me that the closer I feel to a person, the worse I speak. 

 

Here is my best guess about why I have so much difficulty with speech with my best friends: Enlightenment has always come through a single word from you, and one word that you have used is “betrayal.” My birth mother and the two Tyrells, the Catholic Church and the state all ‘betrayed’ me. Everyone who was responsible for me, let me down. However, it’s only since becoming your patient have I heard of my past described in such terms as ‘neglect,’ ‘abuse,’ and ‘betrayal.’ Perhaps, I am wired, by this condition, sub-consciously, to believe that the closer a person gets to me, the more I fear betrayal.

Plus, this happened (as you know) Chris and Frani, two very close friends for 52 years, came here, bullied me, shamed me, and walked out of my life. They ridiculed me tor explaining my condition as we understand it. They have their own theory for my condition, and it is a mean one.

If my theory is correct, is there anything that I can do to become more fluent with my friends?

I have a related concern.

As my speech capacity has declined, I’ve become very physical when I speak. Not always, but often. Head bobs, tensing of the muscles in my shoulders and neck, arm movements, body swaying, etc. The harder I try to speak, the more physical I become. It can become painful when I speak too long. 

Often, with friends, I have apologized for my physical symptoms, and complained about them. When it has become a point of discussion between us, I’ve truthfully said, that it only happens when I speak. All this has led to me being far less connected. Friends, I reckon, have withdrawn because they see how their visiting impacts me. Dwight, Steve, David and Bruce, thank goodness, call regularly on FaceTime, and they all know to do all the talking.

I mostly listen, but I can speak very slowly and use ‘key’ words. Example: Could you please lend me a pen? Key word sentence: Pen. Me. Please. (Key word speak is how Tonto spoke to The Lone Ranger.)

For the first time in my life, I have felt somewhat lonely at times, but this is something I can work on. I have plans to invite people over (never just one person) for dinner, and to meet people to play croquet in the park.

Yay Douglas Stuart

So … I went to fitness, and for the first time (in 3 years) Rhonda had to cancel the class for personal reasons. (Her mom is ill.) I did not read the email that comes before every class because I was excited about returning to the class, but Romola was there to fill in the stupids like me who didn’t read her missive.

I drove home in the rain to read until lunchtime. A fair while ago I read a book titled Shuggie Bain. It was written by Douglas Stuart. It tells a grim tale that is exquisitely written. I loved reading it and its soul has stayed in me. When I was 10 years old, I moved into the basement of my home. I was usually alone in my room when I was home with the Tyrells, so now I was in a room with books and a fireplace, and it was two floors removed from their bedroom.

I read almost all of them because they were there. There were cartoon books about war. They were my first step into understanding how dreadful human beings can be. Herbie was a diary of a soldier in drawings and words. There was a great collection of international literary masterpieces that were abridged for children. I loved that collection. And there was the collected work of Charles Dickens.

I read every one of Dickens’ novels. I bless the day I moved into the basement. Reading all those novels thrilled me. I knew nothings of those times. I think they were an ideal introduction to reading. Things moved so quickly in his novels, and as I read my imagination created extraordinary visions of the settings and costumes. But most of all, I loved escaping into Dickens’ world, and out of mine.

Reading Shuggie Bain was as seductive. The vocabulary and the accents of the dialogue are just delicious to read, but tough going at first. These books linger in my mind because they are so thick with atmosphere. I can’t escape the cliché: I am transported to another world, and I feel that I go deeply into it.

When I went for dinner and Steve and Dan’s place, Dan have me a book he’s just finished. It’s called Young Mungo. I don’t read the back or anything, I go directly to the beginning of the book to see how things go—especially with books I haven’t chosen. Two paragraphs into the book, and I’m thinking, “Holy fuck, who is this?” I look on the back of the book’s cover (It’s hard back), and it’s … Douglas Stuart!

There’s some blue sky this morning, but it’s been raining. I’m thrilled for the garden beds, and I’m happy to read and putter through the day. I’m meeting Darryl for lunch at Ground Up. 

Slow Going Continues

At noon, yesterday, I kit the fire. I was sick of being cold in the house. The logs keep my place cool in Summer and warm in Winter. The cool nights here keep my place from heating up, so I lit a fire so that the afternoon and evening would be warmer. After lunch, I took myself outside and into the sunshine to warm up. The sun was intermittent all morning but became brighter in the afternoon as the thin cloud burned off.

Ron walked Sheba at 1:00, and I got busy with trimming the Ivy that is growing on the wall of the shed. That was the only work I did all day. I can be so lazy. But tomorrow, I have vowed to get busy again and fertilize all my plants. It’s work that is long overdue. By evening, it had clouded over.

•

I can barely speak to my pets. I whisper instead. I’m scheduled to meet with Darryl on the weekend. I’ll see how it goes. I’ve been avoiding initiating communicating with anyone. Dr. Shoja and I know that the agenda for next time is the decline in my speech. Dr. S. betrayed a concern that something is akilter. I have no idea what word to use there, at the end of that sentence, but she set the agenda for our next session, in response to my question about getting worse.

The problem may be self-perpetuating. I hate my impediment. I get frustrated, I always apologize for my speech. I feel compelled to, and that’s because I feel it must be a burden to listen to me. I don’t really know what it’s like to talk with someone who speaks as poorly as I often do.

I’m mute in some places here, and everywhere I go off the island. So, on the one hand, I’ve been lucky to be able to speak, sometimes well, other times not well, with my friends. That is what’s getting harder and harder to do. At least it is an affliction that doesn’t hurt. I look forward to talking with Dr. Shoja next month.

•

Rain this morning. I am returning to fitness to see how it goes.