A Summer-like Day

As you may notice, on the top right of this homepage of my blog, there is now an orange image telling you whether I am having a speaking or non-speaking day. I will ensure the right message is up every day. I’m doing this so that friends can know how to best communicate with me: on speaking days, I can receive a Facetime call; non-speaking days require arranging to speak on Zoom with its chat feature or communicating via email or text.

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Yesterday began with a lot of domestic chores, and a long email to Jess about our future. Then Her Highness and I went to Drumbeg to walk because it was My Day and because it was so gorgeous and warm. It was a no coat day. (The photos are below.) When we got to the park and entered the drive into the parking lot, there was an Otter on the road. He moseyed down the road to the beach and I drove very, very slowly behind him snapping photos.

I wrote to Jess with serious concerns before we left. I’m not sure I see the point in seeing her on days when I cannot speak. I feel our calls should be limited to speaking days and that her function is to help me speak as well as I can on speaking days. In our recent session, she wanted me to try to speak or make sound on a day when my body didn’t want me to, and that’s why I had four seizures. I do not want to have more seizures. I do not want to try to talk on days when I can’t.

When we got back from our walk, I posted the first orange speech status image on my blog, and then we had lunch. After lunch, I wrote to several friends to tell them to go to my blog to see what my speech status is before trying to reach my by Facetime. Facetime is how I’ve distance communicated in the past, but it has no chat function, so on semi-verbal days, I can use it, but on non-verbal days, I cannot.

Then we went shopping for things so that I can bake a tart tomorrow and make mushroom pasta sauce. And when we got home, it was 18° and so I tidied the courtyard, put chairs out on the deck, and cleaned the deck a bit, all for Di’s visit. I was very happy to be doing yard work and not working on my speech and adaption. I need to live and not just work for SPACE and on my methods of communicating.

When I finished doing as much yard work as I wanted to do, Her Highness and I went for our afternoon walk. It was 18°! No coat, no hoodie, just a t-shirt and we had a lovely slow walk to tire her out thereby inclining her to sleep while I went out for dinner.

What an incredibly wonderful day of sunshine and warmth. It was like a fine Summer day, not too warm. Just perfect! I was so, so glad I had plans to go out for dinner with Eoin and François. I am soready for a bit of fun, time to relax, and to forget about my speech.

We had a good time. I could very slowly string ‘key’ words together to communicate. I felt welcome and happy in the company of my friends, and that means a lot. They did not make me feel uncomfortable. I felt we all had fun together.  Eoin wants to go to Country Grocer with me one day. I was really moved by his wanting to be with me.

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Today will be even warmer than yesterday. It’s going up to 20°. I have a lot to do today. I want to make a tart for Dianne, and the pasta sauce for tomorrow night when she is here. And I see Dr. Shoja at 13:00, and that might mean that I can speak a little while Di is here.

Photos taken at Drumbeg Park.

Above and below: The Otter who loped ahead of 
me on the road to Drumbeg.

Gorgeous tiny flowers were everywhere.

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.

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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.

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.

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.