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 9th, 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.
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