A Day of Silence

This film, Happier Alone, expresses, beautifully, who I am. Here's a link to see it. It’s only a few minutes long, and it’s followed by a brief view of the filmmaker building the lovely little set pictured above. 

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I had to water my gardens yesterday. It seemed clear to me that there was not going to be any rain yesterday, and there’s no prospect of rain for the coming days. Sigh. I normally don’t have to start watering until late May or even mid-June. It’s scary that we’ve had so little rain this Spring.

If there is a reason I move into lock up, I don’t know what it is. It seems entirely arbitrary. Suddenly, I am locked in. That’s what happened yesterday morning. If I was at a social gathering when this came on, I’d be very distressed because it would be weird for me to be witnessed as semi-fluent and then suddenly locked in.

I’m keeping a diary for myself to see if I can see any pattern in the onset of my lock-ins. As time passes, perhaps I will learn something about why they come on. Plus, my diary helps me report accurately to Dr. S. I’m now content with my situation because, between lock-ins, I get periods wherein I can speak with friends reasonably well.

Although it was not cold in the house yesterday morning, I lit a fire anyway. It keeps the house more comfortable through the day, and the cats love it. I let the fire burn out though, I don’t keep it going once the house is warm. And I was out early to spot water where I saw plants in distress from thirst. However, I need to water all the beds. 

When I was done, I wanted to talk to David in the UK or Steve in LA, but I couldn’t call during lock-in. Instead, Her Highness and I went for a good morning walk under cloudy skies. When we got back, I went to bed. Why am I so tired now, I wonder? Soon, it was lunchtime, and then I climbed onto the chaise with my book.

Being locked-in, as I call it, is so severe, I cannot even move my lips into position to say something. It’s a bit shocking to think back to when it first happened. I was so frightened and sad. Now, though, I don’t feel panicky. I know there will be good days ahead, so all I have to do is wait it out. 

We went for our afternoon walk and then had our usual evening together. I never regained any speech. Not even one syllable will come out. When I went to bed, I still could not move my lips into position to speak, but I went to sleep believing I might have speech today. Oh, I hope so! 

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Sheba and Fred tag-teamed getting me up this morning, and once up I chose not to try to speak to my pet buddies. I did not want to begin my day on a downer, realizing that I was still locked in. I wanted to delay knowing, but when Sheba pawed at the door wanting to come in after snooping around the yard, I discovered that I am. I could not speak to her when I opened the door. Worse, there was no rain last night. I will have to water all the beds today, or as many as I can, and I’ll do the rest tomorrow.

It’s My Day today, and I have not a thing on my calendar for the entire week except talking to Aidan on Wednesday. Since I’m not speaking, that is a good thing!

No Energy

No Zoom call, no appointment, only a need to go to the pharmacy to pick up new inhalers. It was another stunning day of sunshine. Tomorrow, with luck, we’ll get some rain. Given my crash late on Thursday, I was grateful for a slow and easy day yesterday.

I had a spa at sunrise, long before it was time to go to meet our friends to walk together with our dogs. And it was a spectacular day to be forest walking. I could not believe how at ease I felt yesterday morning, given the horror of the night before. I was pleased to be so quick to recover emotionally.

Of course, I had no idea of what was going to happen with my speech when I met with my friends. That helped me feel good, but I was slightly anxious about how things were going to go with my friends. However, whatever my condition was going to be, all there was for me to do was roll with it.

I got a notice of a nice healthy tax refund from my accountant. That was good news! And I celebrated by buying a new keyboard for my computer. This one is dying. And before I left to join our friends to walk together, I Facetimed with Beth, freshly arrived in Paris.

I wrote to Kris and Steve, and to Nancy, to propose that we have an adventure together. I proposed going to Mahle House, the restaurant in Cedar that I just love to visit. We’re going to go together on a Wednesday night for the table d'hôte meal in May. They are all up for the adventure on May 25. I can hardly wait!

Kris also invited me to dinner at her place on April 25. It’s Nancy’s birthday. I’d be the ninth guest, and I felt it was too many people for me, so I declined. That is a first, and I wish I felt up to going, but I think being part of a group is no longer in my tool kit. Ashlee’s wedding in August will be an exception.

Still no rain. My garden needs to be watered today if we don’t get a decent shower or, even better, real rain. My Butterbur is wilted. I noticed it yesterday, so I will water the gardens today if no rain arrives.

I spoke rather well with my friends during our morning walk. They are the people with whom I am most fluent. It was a gorgeous morning for a walk. We were all in the best of spirits. And when our walk was done, we came home to chill until lunchtime. After lunch, I slept for 2.5 hours and that made the day seem to fly by. When I woke up, we went into the village to pick up medications, and soon thereafter it was dinner time.

I watched a dull movie, and we all went to bed early. I felt tired all day, even with the mid-day nap. I think the crash of Thursday afternoon, plus the seizure, drained me of all my energy.

Aidan got another grant for our SPACE project that I am working on with him. Now we have 65 grand with which to for our project to improve access to social service providers for dysfluent people. Aidan moved me to tears thanking me for my initiative with BC Emergency Health Services. 

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Yesterday, my speech felt pretty good. I talked well with my fellow dog walkers, with Pete when he dropped by for a brief visit, and with my pets throughout the day. But this morning, I am locked in again. The new me seems to go in and out of being locked in. Now, when the freeze comes on, though, I am not freaked out. Being locked in makes me glad that I declined my invitation from Kris for Nancy’s dinner.

No Shit, Diary of a Madman!

I was a busy boy yesterday morning! I had chores to do and a lot to write in advance of my Zoom conversation with Aidan and Darren (of BC Emergency medical Services). I got everything done, sent a bunch of stuff to Aidan, and then took Her Highness for a walk.

I am feeling exceptionally good. I am talking with decent success with friends, but I am still struggling with strangers, my pets and acquaintances. But because I can speak so well with friends, nothing else matters, and so, our walk, in glorious sunshine, so warm and so lulled into bliss by the dawn chorus, was pure ecstasy. 

The sense of crisis is over, although many barriers to communicating with anyone other than close friends remain. Sunshine is a miracle drug. So is Dr. Shoja. I firmly believe unloading to her unlocked my speech. I am so, so very happy again.

Aidan and I were texting back and forth after we got home and before the call. Aidan is exceptionally eloquent about the challenges dysfluent people face, and about solutions. He is very good with institutional vocabulary. And Darren is so profoundly open to receiving advice from us. I was very, very excited about our prospects as we went into our conversation on Zoom.

Our chat was beyond my belief and expectations. Darren is a hero, and so is Aidan. After we chatted, Darren said goodbye, and Aidan and I had a chance to de-brief, and I teared up over what we had accomplished in our call. We could not have a better ally than Darren. He is going to set up a meeting with the Dispatch manager of paramedics. SPACE is going to develop a course on dysfluency and managing communications with dysfluent people, and it is our goal to make our course to be part of the provincial medical learning hub.

Courses on the learning hub earn paramedics credits, and paramedics must earn credits in professional development every year. Some courses are compulsory, others are recommended, and many are just available. Darren is aiming to have our course listed with a recommended status. He is also going to link us up with the 911 management, so SPACE, through Aidan’s and my work, is achieving great, great things and I am very proud of us.

I felt positively giddy after our call. How to celebrate? I decided to go for a long walk with Her Highness because it was toasty warm outside and I felt so good about my speech and what we were doing for SPACE and dysfluent people.

When we got home, I read for a while. And then I was back in the spa. What a great thing it is, what a great island this is, and what a great life I have even with my mental health problems.

I was what I call “locked in” March 28. I was non-verbal, and I had a feeling. It was permanent. It’s all in this blog. The first action I took was to phone Dwight, and slowly, I recovered words, the phrases, sentences, and then, on April 7, I saw Dr. S. On April 8, I suddenly started speaking quite well with friends. It’s in the blog. I Zoomed with Warren of Emergency Services and Aidan and had a great, great, day. I felt very proud of what we had done.

And then….

Last night I watched the penultimate episode of Cirque Life on CBC Gem. I love the Cirque! And then!It’s very odd; it’s as though a switch goes off. I feel it. Well, somehow, I detect it. I know. I’m back to being locked in.

I did what I did last time. I called Dwight. I was in a very serious frame of mind. I told him I was going to give power of representation to him, and a friend on the island. 

And then I’m on my own, awake and very frightened and sad. 

My breakdown was April 9^th, 2016. Yesterday was my ten-year mark on this neurological path I’m on. This is all to Hollywood for my liking. On my tenth anniversary, I crash. It’s my second “crash” since March 28.

I am experiencing an intense sense of gloom. I feel so out-of-control and tired of fighting to keep my connection to Dwight alive and to figure out how to do things. Wednesday and until 17:00 yesterday, I’d been feeling very good about how well I was doing. I was relieved, and then, “switch off.”

 Know this: to lose speech is one burden, to not know what level of capacity is going to be available at any given time, is torture.

I’m so tired of this. Enduring the loss yesterday feels like the straw that broke this camel. I fear that I am going crazy, whatever that means. I feel I am losing my control. I feel I am losing my mind, whatever that means. 

When I was talking to Dwight, he was bantering like we usually do, I kept being very serious. I wanted him to understand that what I was telling him felt urgent to me. At one point, as he was talking, I felt overwhelmed. (I keep wanting to say, “whatever that means (WTM) because words feel inadequate.) I tell Dwight wave my hand at the camera and I say to him loudly, “Slow down, slow down.” But it’s too late, I have a seizure.

See what I mean? Out of control. Out of my mind. WTM

When this came on, twenty years ago, I had to adapt. When I became comfortable with my condition, I would refer to myself as crazy. It was a verbal shorthand for me. Now I’m afraid I am crazy. WTM And I feel so, so bad.

Talk about a day! From the high of talking and planning with Darren and feeling so proud, to wanting to go to bed in Neverland.

My adjective is broken.

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Yes, another day. Another sunny day, in fact, which is nice. I remain ‘locked in,’ but I’m less depressed and shocked about it this morning. I’ve been here before and maybe I will be again, but in between, maybe there’ll be days of semi-fluency. Who knows. There’s naught but to carry on.

Last night was one big emotional crash. I’m glad I feel so much better this morning. What will be, will be.

Zooming in a Beauty of a Day

The amount of pollen this year is astounding! Clouds of it blow into clouds on the roads just like dry snow does in Winter. When I pick up wood from the shed, it smokes like a smoldering fire log. The pollen whisps like smoke. It is everywhere, and it’s dangerous because pollen grains are perfectly round and hard. On my deck, they function like little ball bearings that threaten to have me slip and fall.

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We’re back to cold mornings and lighting fires; however, our afternoons are wonderfully warm and inspiring. I rose with some hope that my speech was back to my version of normal, but no, I felt locked in again. I’ve passed the point of caring, however. I will just deal with whatever happens.

We got our day started by walking with our friends, and then Her Highness and I went into the village to do some grocery shopping and to visit the pharmacy. And soon after getting back to Pinecone Park, it was lunchtime, and after lunch I had a nap and puttered around until my 13:30 chat with my HIV doctor.

The call was a challenge. I got sent a link for our chat, and I sat for half an hour waiting for Dr. Hull to come online. Then I got an email from the tech nurse saying that Teams wasn’t working properly, so I sent a Zoom link and we talked that way. To do that, Dr. Hull had to give me his email address, so now I have it and I can write to him instead of calling through the relay system and getting his bitch of a receptionist who hung up on my operator twice.

Then Sheba and I went for an inspiring walk together before returning to Pinecone Park for our supper. I fed my beloveds and then I Zoomed with Aidan to prepare for our talk with BC Emergency Health Services today. Then came dinner, a movie, and then reading in bed before turning in.

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Today is another fine, fine day. We’ll walk, I’ll have at least one spa, I’ll read and, of course, Aidan and I will be talking with BC Emergency Health Services. I’m very excited about the call. More tomorrow.