Sunday, April 19, 2026

Locked: Day Two

We walked and we passed three people that I know when we walked yesterday morning, and it went okay. I tapped my button and everyone was cool. They talked to me, and I gestured and even said a word or two very quietly and with great effort. I love having my buttons, so people know that I am not rude for not speaking.

Then we went into the village to shop for things to make another pasta recipe of Angela Harnett, a chef I’m very fond of because she’s so gentle, happy, talented and warm. I watch her video podcasts called Dish; that’s where I am finding the recipe’s I love. The one I made yesterday, is caramelized fennel and shallot with shrimp (she used crab). I used pappardelle noodles for mine, not linguini, made with Italian Durum wheat.

Then I cleaned up the kitchen and retired to the chaise until it was time for our afternoon walk. It is such a pleasure to walk Her Highness during these warm but refreshing temperatures. And I Facetimed with Beth who is in Madrid. It was just great to see her. I listened, got a couple of words out, gestured a lot, and then, when the call was finished, I sent her an email of all I wanted to say but couldn’t during the call.

We walked the Elder Cedar trail. We haven’t walked that trail in a long time. It was great. We only saw one other person who was very friendly, I just made a couple of noises and walked on. This is changing me, this problem, and how I interact with people. When I came home, I wrote to Eoin to alert him to my situation. We’re going out to dinner tonight and I have no idea how I will be doing.

Something that happened during my appointment with Jess was interesting. She asked me to look into the camera, and to blow as though I was blowing out a candle. I could not do it. I couldn’t get any wind out of my pursed lips. A short while later, she asked me to put a straw in a cup of water and blow, and I did it immediately and easily. So then, I tried to blow out an imaginary candle and did it right away.

When I was listening to the opera yesterday afternoon, I wondered how people sing. All those notes are made by the vocal cords; they are muscles we cannot feel. Somehow, our brain does what we want to do, when we want to do it. A singer wants to hit high C, and she does, using muscles she has trained, but it’s the mind that sends the right information to the muscles to tighten or loosen on every note.

It seems to me that my mind currently cannot make the right muscles work. I have all that’s required to speak, but my brain is not sending the required signals. It also is very active often, sending signals to move my arms, legs and feet, to make my eyebrows go up and down in constant motion when I talk. The signals are garbled, too, hence the blocks and stammers, and my brain tenses all my upper body muscles, especially in my neck, when I speak.

I’ve been living in silence for 22 days. On 4.5 of those days, I could speak to some extent. Based on my experience to date, I can speak 20% of the time. The two, two-day speaking days were on two consecutive Wednesdays and Thursdays, the week of and the week after I saw Dr. Shoja, whom I see tomorrow. I’m tracking patterns to learn; I’m a knowledgeable patient for my medical partners.

Absolutely nothing feels better than hugging Sheba, and making a fuss over her, and having one or both cats with me on the chaise. Bengals are aloof. These two came to me in separate cages. They were unknown to each other, and they wanted to kill me.

I put them in the bathroom together to work it out. It took two days. Then I put them in a guest bedroom. I carried them separately wearing industrial gloves, and I left the door slightly ajar after I left the second one. They always had food. Eventually they emerged, and it has grown slowly into a wonderful family relationship.

These Bengals don’t like to be picked up, so I never have, except to take them to the vet. They emerged into the house and grew to trust and feel safe with me. They don’t want to be on my lap. They like to lean against me. Fred is a slut for affection, however, and I love, love, love, to give it.

Sheba is my intimate partner. She still sleeps on my bed sometimes, but she slept with me every night from arrival until about two years ago. She’s a big girl, she’s going to be nine in September, and she has weakening back legs, so sleeping on the floor beside my bed is where she likes to sleep now.

It’s my beloveds and walking in nature that fills me with such a wonderful feeling like a drug. All worries, all concerns leave my mind. Having Sheba with me everywhere I go and being at home with her nearly all the time has built a strong bond between us.

I’ve told the story before; my first love was a cat I watched for years that lived outside, owned by people who never let him inside. It broke my heart to see that unloved cat. Our dining room window faced their house, that’s why I knew Aleck’s story, and that’s why I watched Mrs. Blanch come outside, pick up Aleck, and walk up to our front door to give Aleck to me. She’d first checked with Don.

I didn’t know that I was being neglected and destroyed. I didn’t identify at all with Aleck. But I saw him as neglected, and that with him, I no longer felt alone in the world. He was my first love. 

Next came a dog and another cat. Connie and Don seemed to be aware of my solitude and my love for animals; they gave me pets for company instead of themselves. They scored big time with Aleck, and when he died, I felt another emotion. I cared about him so much, I missed him every day. I was innocent and unaware of the emotional void between me and Don and Connie.

Every child must feel love. To love, it must be the first lesson we learn. We smile long before we learn where to pee and feed ourselves. I don’t know how I was treated in the orphanage, of course, or in my early years with Don and Connie. All I know is that my world view changed when I met Aleck.

I had not experienced constancy and affection until I met Aleck. That’s why I think I am so passionate about animals. Animals unlocked emotions that wowed me; I was hooked. That never happened between me and another person until I met Steve. By then, I was 30. And then Dwight moved in. Family.

When I woke up this morning after a death-like deep sleep through the night, the first thing in my mind is, ‘can I or can’t I?’ I choose not to speak to delay the sad realization of being unable to speak, but when I took Sheba outside and walked with her to the gate to open it, without thinking, I tried to speak and couldn’t. And instantly, it’s a day during which I want to avoid people and video chats.

Just 20% of my days, on one in five days I can speak. Today is day three of this crisis of silence. Tomorrow, I see Dr. S. I have hopes of speaking tomorrow or Tuesday when Di arrives. Fingers crossed.
















Saturday, April 18, 2026

Buttons Arrive

I was fine, if a touch disappointed, to find myself totally locked in again yesterday, especially since I had my first appointment with Jess, the speech language therapist. On the one hand, I expected my locked-in state to return, but on Thursday, my third day in a row being able to speak, I’d started to hope that being non-verbal was over.

It was a lovely bright morning, if a bit cool, and walking with my friends in the forest was a delight. I will never tire of forest walking. I, of course, couldn’t talk with anyone, so I happily walked in silence and comfort listening to my friends, and then I rushed home to be here in time for my appointment with Jess. 

I had four seizures during our chat from trying to talk, using techniques that Jess was teaching me. I found myself wanting to escape, but I am going back for more. I want to keep trying, at least a couple more times; it’s $160/appointment and my insurance won’t cover any of it. I just hope that our next session falls on a day when I can speak.

When our session was over, I wanted peace after all the seizures. We had lunch and then I got on the couch with my book to read until it was time for our afternoon walk. I wanted to see no one and speak to no one. I just wanted to be alone and quiet. I felt like I’d been through the wars.

On the way to our walk, I stopped at my postal box and inside were my buttons!!! I was super happy to have them, I put one on right away, and I was less fearful of encountering people. Karen, at the vet’s where I went for Sheba’s prescription, noticed the button right away.

"Hi. I'm Chris and I'm non-verbal."

Our walk was wonderful. I walked slowly behind Her Highness, very, very happy to be in the forest. But at the same time, I felt lifeless, lethargic, depressed by being non-verbal again, and by the four seizures within an hour from trying to speak. Sigh.

I was glad, too, to get home again, and to be alone and to have no calls or anything to do all weekend. I see Dr. S. on Monday, and on Tuesday, Di arrives for two nights. But for now, 2.5 days of solitude. 

Today is the last cool day for quite a while, and I will have to start watering again. Starting tomorrow, our afternoon temperatures will be in the highest teens and there’s naught but sunshine in the forecast. I shall thoroughly enjoy doing yard work and reading outside, but what I’m really looking forward to is three days with Dianne starting on Tuesday.
















Friday, April 17, 2026

Locked-In Again

Thursday dawned cold and bright. I am so sick of the cold. But next week is going to be spectacular. Once I dress warmly in the mornings, the cold becomes irrelevant, and once I start walking up the Ricki hill, I’m comfortably warm.

I awoke happy because I was able to speak to my pets, I had no obligations all day, and I had the most delicious pasta to look forward to for dinner, and no work to do to enjoy it—just a quick heating on the stove.

We walked and it was gorgeous. I was in heaven as we walked. Nothing was pressing on my mind, and I had all the time in the world to walk. It was lovely and we saw no one. And then we came home. I read and she slept, and soon it was lunchtime, and after lunch I walked over to Pete’s (Ali is away) and invited him for dinner. I had lots of past left. And then we went shopping for some dessert to serve Pete, and for our afternoon walk. 

I got registered with Jess’ company, and she is going to be in touch about a time to meet today. Yesterday, she wrote this to me: “I'm also wondering if what you've been experiencing since the 28th is aphonia, or lack of phonation (no voice) aside from the grunts you described. This can sometimes be related to tense or tight vocal cords which could be connected to your FND.

This is from Google: “Aphonia is the total loss of voice, characterized by an inability to produce sound or speaking only in whispers due to vocal cord dysfunction. Causes range from vocal strain and infections to nerve damage or psychological trauma. Treatment involves vocal rest, therapy, or psychotherapy, with potential complications including severe anxiety and communication challenges.”

Pete and I had a lovely time together. He is a terrific guy and a fine, fine friend. He appreciated the meal, loved the pasta and he left at 21:00, allowing me to get to bed at a nice early hour.

I’m very excited about seeing Jess today. I’m enthused about learning techniques to help me communicate. Ten years of poor speech and this will be my first appointment with a speech therapist. I see her at 11:00 this morning. But I wonder how things will go. I appear to be back in lock-in this morning. I haven’t been able to speak to my beloveds this morning. 

“Locked in” is my term and it’s an apt description of how I feel. Something is blocking my speech; it feels locked up and unavailable to me. And I like saying locked “in” because everything is kept inside. All I want to say remains within me. I had three days of speech, and now I’m back behind bars. However, I am not freaked out because I know that there’ll be more days of speaking.

I can’t whisper but I can move my lips. I envy people who are constant, steady, who wake up each morning as the same self who went to bed. I have no idea what I’m in for each day when I wake up when it comes to capacity to speak, to communicate. It’s so fucking frustrating. Sigh.

We’ll walk with our friends this morning, then I’ll see Jess, and then I hope to finish my fourth Kate Atkinson novel. I’m glad that I saw Pete last night, but I’m really glad that I have the afternoon and evening to myself. The sun is shining but there are lots of clouds. It’s a good day to chill.
















Thursday, April 16, 2026

A Great, Great Day!

I’m typing on a new keyboard. The spacebar on my old one wasn’t working well, and one letter was not working unless I really bashed it, so I’m very happy to have this new accessory. It makes typing far easier.

We walked with our friends in the morning, and I enjoyed a very fluent chat with them. After our walk, I went to the credit union to renew my car insurance and was unable to talk to Lynn at all, even though I know and like her very much. I make note of all these things because I want to understand my patterns.

It was like Christmas yesterday, because my besides my new keyboard, the new hoodies I ordered arrived. I’m childlike with my enthusiasm over such simple things.

I pondered my happiness yesterday and realized how happy I am, at my advanced age, to be so constantly content. Why, I wondered, and I concluded that it is partially due to my lack of desire for sex or a mate, and my complete disinterest in my ego. I am not trying to ‘be someone.’ I have no interest at all in recognition; I have no ambition at all, and I reckon that is a wonderful thing.

After lunch, I read for a while before Zooming with Aidan at 14:00. I had done a lot of work that he wanted doing, and so I looked forward to hearing his impressions of what my research revealed.

Our talk was a great one. Working on this project, we work as partners, and I feel good about the work that I’m doing. I admire Aidan, and value being of service to him. And I know that he is pleased with my work. My initiative to reach out to the 911 and paramedic organizations has earned me my keep for quite a while.

At the end of the call, Aidan made a suggestion that he’s made before. He proposed that I see a speech language therapist that he knows. She is familiar with neurogenic stuttering. He sent us each and email of introduction and she wrote back and I am on my way to see if I can learn something that helps me communicate.

Yesterday, I briefed him first on working with clinics, an objective of his. I told him why I concluded that we shouldn’t by explaining to him the different governance models and the obstacles for each one. He agreed with me. Then I explained to him, an alternative target: the Health Professions and Occupations Regulatory Oversight Office.

The Oversight Office accepts complaints about the Health Professions and Occupations Act (HPOA), its regulations, and about the performance and conduct of British Columbia’s (B.C.’s) health professional regulatory colleges. Within the mandate of the HPOA is a commitment to: “Creating safety and identity protection measures and support for complainants who have experienced discrimination, sexual abuse or sexual misconduct.”

I firmly believe that dysfluent people have experienced discrimination that is systemic. We are developing data to prove that we are, and yesterday I asked Aidan to consult with his pro-bono lawyers about language. We ae focused on medical access right now, but next is banks and Aidan likes my strategy.

It was a great day. A long walk through the forest in the morning, Aidan after lunch and then beginning a conversation about speech therapy with an SLP. Jess, the therapist, suggests we have a couple of sessions and then decide on what to do: “To see if you feel it’s a good fit.”

Then I made dinner. See below. I saw a short video on YouTube of a person making pasta with lemon zest. I love all things lemon, so I decided to make the dish last night. It’s pasta in a creamy, lemony mushroom sauce, and oh my God. Fick pesto, this is just as easy and just as delicious, and I can hardly wait to make it for my vegetarian friends, Pete and Ali. It’s the lemon that’s so exciting. I would never have thought to do that. Yum. Yum.

Today I will read, walk with H.H., and have more delicious spaghetti. I’m looking forward to a feet-up, bone spurs a’danglin’ day.


ˆThe mushrooms are coming up everywhere. Look at this beauty!


A huge one!


My Plumb tree, planted two years ago, has lots of blooms.
I hope to get my first fruit this year.

My Rhodo is a'bloomin!

Getting ready to make my pasta. Chopped onion, garlic, salt and peopper,
Italian parsley from the garden, cream and sliced mushrooms.

Sautéed shrooms and onions.

My new lemon zester. It's the lemon zest that makes
this dish so, so delicious!

The cream and sugar, garlic, zest. parsley added.

Then the pasta goes into the pan.

Heaven on a plate!