Doomsday

Thursday was a dreadful.

I had an 8:00 appointment at the dentist to go to and then a very important Zoom meeting with SPACE members about fundraising at 10:00. I went early to the dentist appointment so that I could walk Sheba a little around the fields surrounding the clinic building where the dentist offices are.

I was called in at 8:00 sharp. I really like the charming and beautiful dental hygienist who cleans my teeth, and I love my dentist. I also love the reclining chair and watching TV while the hygienist works. All was going very well, until it wasn’t.

At about 8:30, I needed to cough, and so the hygienist stopped working on me. Then I started having a seizure and it was the most violent seizure that I have ever had. It was about 8:30 when it started, and it kept getting worse and worse and more violent, so they ushered the other patient out of the office and all the office staff got involved in trying to keep me restrained and on the chair. 

As the seizure went on and on, I was struggling against the restrainers. By back was arching and as it went on, all my muscles started really hurting me. I could hear, but I was non-responsive. When I wasn’t seizing, I lay there staring straight ahead unable to move my eyes or any part of my body.

They called a doctor down from the clinic upstairs, and she called 911. The two paramedics who came were Derrick and Christine. Both are friends of mine. As things continued, I could hear, but I could not respond. I could not move my eyes to focus on anything, nor could I move any muscles of my body. 

I was dead weight, so Chrstine and Dereck had to struggle to get me onto a gurney. My dear dentist took my hands and said king encouraging words, just as Derrick and Christine were doing, but then she kissed my hand and she said she loved me. I was very moved by that, but I couldn’t even move my eyes to look at her.

Once on the gurney, I was put into the ambulance, and it drove me all of thirty meters to the clinic treatment room upstairs. There, I was restrained with straps and given Lorazepam. Slowly, slowly, I started improving. First, I could make eye contact with Dr. Thorne. Then I started signing to Christine who knows ASL, and soon I was saying single words. On my iPhone, I opened my contacts to Eoin and François whom they called to come to fetch me. 

Eoin got my car going and drove me and Sheba home. François followed and he picked up Eoin here and they left. I immediately got online to the Zoom meeting where I was in a daze, but I could listen to everyone.

The rest of the day was very odd. I had an eye patch on from damage I did to my eye when I was seizing, and I just lay all day on the chaise. I had no appetite, no energy, and I felt very woozy. My cluster seizure lasted from 8:30 until 10:10, and I was terrified all through it that I would be like that forever.

All my muscles are strung tight during my seizure, so my muscles were aching and cramping by the time I was in the clinic. Once at home, I ate small meals and had more Clonazepam; Sheba walked herself in the yard. I did not feel myself all day.

I don’t see Dr. S. for three more weeks, but I wrote to tell her what happened. She is going to call me in earlier if there is a cancellation before she goes on holiday.

Today, thankfully, I have no Zoom calls, and no meetings. I get the entire day to myself. I have some SPACE homework I can do, but I may leave it to the weekend as I am still feeling spaced out from yesterday. I may just laze the day away.

Jack Lowdon and The Fifth Step!

My poor, dear Sheba did not want to walk yesterday morning. It made me so sad, and I worry about what’s ahead and how much longer we have together. It frightens me to anticipate our future. At least she seems herself around the house, and I have a large yard that enables her to do her business by navigating only two shallow steps.

I was busy cleaning and tidying all the early morning. I love having a clean and tidy house. After our failed walk, we came home briefly, and then we went to Rollo Park, where she is most willing to walk, on our way to the groomer’s salon for a wash and clipping. She walked, but very, very slowly and not for very far. I felt extremely sad.

Once back home, I was a bit at a loss. Nothing needed doing, and I was very sad about how suddenly and severely poor Sheba’s mobility was declining. I had no SPACE homework, so I wandered outside to do some spot watering. I have two beds that are under eaves and need watering even in the Winter. Then Pete and Ali arrived for their ride to the ferry terminal. I took a book so that I could read while parked in the sunshine until it was time to fetch Her Highness.

And then it was lunchtime. We all love eating, and Sheba was perky. She gave me a little hope with her gait and enthusiasm for home and lunch. Afterwards, I did some reading on the chaise in my nice warm and cozy house. Oh, how I love the heat my firebox provides. It is heavenly. And so is the spa. I had a lovely soak before I took H.H. to see if she would walk. We went back to Rollo Park because it is her favourite walk. I was afraid to try the Elder Cedar trail.

She walked maybe thirty meters. She walked slowly with her head down and then she just stopped. And like an old horse I once knew who walked extremely slowly and would not speed up when we went out for a ride, but who galloped home once I had her turn, Sheba pranced back to the car.

She’s okay, except for jumping up on things and walking distances. She’s seemingly her normal happy loving self otherwise. I’m going to build a new bed for the van that will have two levels so that she can get up to the hight of the current bed in two steps instead of one jump.

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When I went to see Dr. Shoja for the first time, I was early. I found her office, and then went to a little space, defined by filing cabinets, where there were a few chairs. I was the only person there. At the time, I could barely speak, and I was having between ten to twenty seizures a day, and I had no idea why I was in such and altered state of being. I awoke one morning, a month prior to this first meeting with a psychiatrist, totally transformed.

This is the state I was in: I emptied by backpack and lay down on the floor with my head in the backpack.

From the beginning, Dr. S. said that she would be available to me for the rest of my life. Our second meeting, a week later, began with her reading a diary I had begun. This is how it’s gone every meeting since over the past ten and a half years.

There was no end date to my treatment. There was no handbook, Be the Best Psychiatric Patient You Can Be! Dr. S. and I just started talking. I did most of the talking; I drove the agenda. She remembers a all the important things that I tell her. I lucked out getting Dr. S. She is ideal for me.

After eight months of meeting every week, we moved to every second week. Now, it’s once a month. Twice, I told Dr. S. I wanted to stop seeing her, knowing that I could come back if I felt I needed her. Both times, I thought I was stopping for good though. I said, “I’m going to need you when Sheba dies.” When I stopped going for the first time.

Sheba is not close to dying, but she is an elder dog and now I have a an even stronger bond because I know there’s no longer a sense of infinite joy. I’m aware that time is limited.

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Right now, I have two saints in my life: Dr. S. and Aidan. The amazing experience I am having with SPACE, with my fellow dysfluent folk, has given me community and purpose. And not too far from now, I turn seventy-nine, and I have a part-time job with SPACE!

Today, I am co-hosting on online meeting with six fellow dysfluent speakers, to discuss fundraising for SPACE. I initiated this meeting, and I solicited the other committee members via our online SPACE chat group. We’re having another one to discuss how we can grow our memberships.

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When I was a kid, there were two broadsheets of coloured comics in the newspaper for which Don worked. Dick Tracy was on the first of four pages readers saw. Dick had a wristwatch that allowed him to speak to on a ‘two-way radio’. I thought, never happen. This morning at 10:00, I will be sitting at my desk looking at my screen interconnected with people from Canada and the US, discussing fundraising for SPACE. 

Each letter of SPACE stands for something: Stuttering People Arts Community Education. There is no SPACE office, there are events and workshops on the ground; the SPACE community and its governance exists online. We have a board; we will be a legal charity enabling us to issue tax-deductible receipts in both the US and Canada, in February.

Besides the board, we have an Advisory Board, a Youth Advisory Committee, and a panel of a great many Teaching Artists, and there are other panels too. The members of all these groups, and the board, are living in cities scattered across the US and Canada There are affiliates in Europe and Japan as well. Our community interacts in a chat room on What’s App.

At first, I had trouble understanding the infrastructure and operations of this aptly named organization called SPACE; I felt lost in space. Now I am up to speed with Aidan and our colleagues. I’ve learned many new technical skills, I am current in SPACE language and philosophy, and I feel fully functional as a board member. And I’m having a ball!

We also have a mailing list of speech language therapists, academics studying stuttering, neurologists studying stuttering, and artists and teachers who stutter. 

I will soon convene another SPACE meeting about memberships. A lot of people say, honestly, that they have fundraising experience. Well so do I, but precious little of my experience is pertinent to working with an online community. My skills are all with on-the-ground cultural communities. The communities I have been involved with were called season-ticket holders and audiences.

My experience on-the-ground doesn’t transfer well. How do you sell memberships? How do you create benefits for a diaspora of people living in different cities and countries? How do you create a society that is meaningful to an online community so widespread on the ground? I have no idea, that’s why I want to have another meeting after today’s meeting, about building our membership. 

Finding more members means finding targets for a marketing campaign. Targets are essential. How can we do contact the vast number of stutterers in several countries to create and grow memberships?

So, at 10:00 today, I’ll be taking with people from New Jersey, Tennessee, Vancouver, Los Angeles and other places. And I have an Apple Watch that lets me answer phone calls. 

I thought Dick Tracey’s watch would never happen. But it has and so have a lot more technical innovations in communication.

•

Last night, I renewed my subscription to National Theatre at Home, and I watched The Fifth Step, a two-man hurricane of a play by David Ireland and featuring a cast of two: Jack Lowdon and Martin Freeman. What a masterful actor Jack Lowdon is, and Martin Freeman is no slouch either. 

But the magic is in the writing. In theatre, the playwright is central; in movies the screen writer is more part of a creative team wherein the producers have a loud voice. Playwrights provide better scripts than screenwriters. Or maybe playwrights just work in a medium that I was born to love.

I had the time of my life last night watching this wonderful, powerful production. And, oh, Jack Lowden is a young wonder! And he’s married to another powerhouse actor: Saoirse Ronan.

Another Day of Rest

 

Every year, the Japanese Maple that grows in the courtyard right in front of my studio puts on an incredible display (above). I had no idea how beautiful this tree would be when I planted a wee sapling eight years ago. Everything I did was just hap hazard, but I am thrilled that I planted it where I’d be able to see it from my desk where I spend so much time.

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Tuesday was another lovely day. I did chores in the morning; my favourite always being lighting the fire. But when I came in with the wood, I could barely walk from the shed to the back door because my back was hurting badly, and I realized how frequent the problem was becoming. This aging thing sucks!

We went for our morning walk and then we went into the village to fetch a prescription. On the way home, we had another short walk in glorious sunshine. It’s become quite cool in the mornings, but the sunshine still feels wonderfully warm on my skin. When we got home, I had to do some spot watering which is very unusual for mid-October.

I finished reading my book in the afternoon and then I did some SPACE work for Aidan before we went for our third short walk. Now, every time we walk, every time we go anywhere, I see how close we are to needing a ramp for Sheba to access the bed in the van. She really is struggling with her back legs and it breaks my heart. There are often tears of fear on my cheek.

I spent a lot of time reflecting on my experience last weekend. After ten and a half years of strong stuttering, I finally met another person who stutters in person. There is nothing like finding your people! But I can’t do something like last weekend too often. These trips sap all my energy. Yesterday, I was still feeling a powerful need to rest, but today I feel back to normal.

I’m very happy to see a largely empty calendar for the coming two months. And I believe I’ll only need to water the garden beds once more this season. Come Saturday, we may get rain and, hopefully, there will be more days of rain after that. 

Bonnie and Sue will be moving here from Kelowna in just over ten days. It was so wonderful to meet them at Silva Bay last Summer. We had an instant connection, and now I will have their company to look forward to periodically on a permanent basis. Now that I am not walking with my fellow dog walkers, having more friends on the island to visit with is wonderful. 

Today is going to be another bright and sunny day. Sheba goes to the groomer’s, I see Pete and Ali to take them to the ferry, and in the afternoon I Zoom with Aidan. All that, and I start a new book.

Still High from the Weekend

Monday’s high was a mere 13°. Sigh. But I got a wee bit of gardening done that I’d wanted to do. Mostly, I napped, read, did some shopping, and took two walks with Her Highness. My day was dedicated to recovery and enjoying the thrill of being home and the performance and film making behind me.

For the next several days, it is going to be sunny, which is nice, but for the next couple of months, I have nothing demanding on my plate. I had such a good time this past weekend, but it takes a lot out of me. The amazing thing is that I didn’t even come close to having a seizure. As I wrote here a few days ago, the progress in my neurological recovery is palpable.

My lungs are another story. I’m having monthly tests now, but I am also avoiding hills again and walking slowly. On Sunday evening, when I had half an hour to get some food at Thrifty Foods before the ferry arrived, I hurried to get there and thought I might collapse. It was very painful; I was so completely out of breath. The loss of lung power scares me. 

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The challenge of experiences such as my recent weekend is the stimulation.

During the trip, as I mentioned here yesterday, we hit kilometres of traffic on the highway. At one point after coming down a long steep hill called The Cut, we entered onto a small bridge and, being on the flat shoreline and about to rise toward the bridge, I could see the traffic jam extending onto overhead bridges, access roads and on the bridge itself. It got me shaking and hyperventilating, but I didn’t have a seizure.

It hurts to see all those cars. It really hurts to be in one in a tsunami of vehicles going in every direction and overhead on overpasses. It hurts my brain. It was extreme overstimulation. Urban life is not sustainable for me. Seeing columns of balconies the size of carpets, it sickened me to think of life in a tower. Elevators are sewers to my brain.

This angst of the trip, however, was blown out of my mind once I was in the company of my community of stutterers and allies, for the first time in my life. It was highly effective medicine. I did myself well by introducing myself to my local community with my monologue. I was Mr. Joy-Boy all weekend.

At the film shoot. I met James, and I had another immediately intimate friendship growing. He is in the film when the voice-over is about aphasia. I learned a lot about aphasics from him in the most comfortable conversation imaginable. We are family. We have speech challenges, and we can talk about them so fearlessly with each other.

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This morning, when I went out for wood with which to light a fire, it was 6° outside. Brrrrr! But it’s another sunny day, so we’ll enjoy our walks, I’ll read and do chores.