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.

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.

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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!

Taking on the Banks

It feels so, so good to be happy again. It’s miraculous to me that although the abuse I suffered in my youth has brought on my seizures and destroyed my speech and nervous system, I have always been a relentlessly happy person. I lost that feeling for a while when this total eclipse of my speech set in, but now it’s back, and getting to live in Pinecone Park with three spectacular pets is no small part of my happiness.

I was a madman yesterday morning, getting seriously involved in domestic chores at 6:00. I vacuumed, sorted all my recycling, did laundry, cleaned the cattery, lit the fire, and got the garbage out for heading out with Her Highness. 

Also, part of my early morning also included researching how best Aidan and I might approach the problems dysfluent people have with banking institutions. My research led me to the office of the Ombudsman for Banking Services and Investments where I found lots of valuable information about customer service standards for the industry. I think I may have found our target.

Under overcast skies, and in chilly 7° air, we went walking. I’m very glad to walk when there is no rain. This Winter and Spring has been incredible. I’ve only walked once when I had to wear my rubber trousers and put a coat on Sheba. I’m glad it was dry for our walk, but I’d hoped for rain throughout the day. Instead, it got brighter in the afternoon and there were sunny periods.

I read after we all had lunch, then we went shopping and I filled the car with gas ($125!) and then we went for our afternoon walk. No emails today, I never get phone calls, and I hardly ever get mail. People used to call me very social. I suppose, in a way, I was. But it was torturing all my life. Now, I live the way, it seems, that I was meant to live. It’s what I want, but it’s weird at the same time.

Last night, I was ready for bed at 19:00, but I managed to stay up until 21:00. Fatigue has become a force in my life. I slept like I was hibernating, but what a gorgeous morning welcomed me this morning. It’s cold though (3°), and I’m sick of the cold. However, we’re in for a long dry spell and next week is going to be wonderfully warm with temperatures in the high teens. Whoopie! Next week: lots of yard work that I am very keen to do. But I’ll have to do some watering as well I imagine.

Today, we will walk with our friends, and then I am looking forward to Zooming with Aidan because I’ve done some good work recently, and I’m looking forward to talking about it with Aidan.

I Can, I Can't

Can you believe it? I’m find it incredible that the orange blowhole posted this image himself—well, his team posted it for him I imagine, but on his direction I’m sure. What an embarrassment for the USA.

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Yesterday began with good news. After all my watering on Sunday, we had some rain overnight Sunday night. Not a lot; only enough to moisten the surface, but it washed all the pollen off the deck and all the leaves on my shrubs. I did some soaking when I watered the beds and that’s what many plants needed. Still, it was very damp yesterday morning, and it felt good for the forest and all the florae. 

I’ve had two emotional shocks over my speech in the past two weeks, so I am very grateful to be feeling more or less at peace with being non-verbal. What’s most important is to keep feeling good about my friendships with a very small number of close friends. Dwight has been steadfast, and that is vital to me. He has my power of representation and is my executor.

I also feel good about declining Kris and Steve’s invitation to a dinner party. It’s not an easy thing to do with friends who mean so much to me. That’s why I proposed going on an adventure together to Mahle House restaurant in Cedar. We are going May 6^th for the table d'hôte dinner. By making the proposal, I was signalling that I am keen to be with them in a small group. I just can’t do parties anymore.

Sheba and I went for our walk at 8:15 so that I could return to Pinecone Park, drop her off, and then go into village to meet with Bruce and Dana. When I came home, I checked my cistern. After my big scare a couple of months back, when I discovered it was close to empty due to a stuck valve, I’m relieved to find it working well again. After a huge watering yesterday, it is full.

Although I can’t say words, I can make sounds with the same intonation of things that I say. I can’t say, “come on Sheba” when I want to her to come in from the yard. But I can make sounds that sound, to her, the same as when I say words. She amazes me every day with how cooperative she is. She, too, is adapting and my love for her is bursting.

I called Steve on Facetime. I could slush speak single words, sometimes two or three in a row, and he understands what I am saying, more from the tonal variance than from clarity of speech. But I’m grateful for that. It makes me feel good, less isolated, to be able to communicate very modestly with my cherished friends. That’s a big plus. After chatting with him briefly, I went off to Mad Rona’s to meet Brent and Dana.

I did rather well with Brent and Dana. It was a huge relief, then, when I was shopping later and ran into friends, nothing. I could not get a sound out. It seems to me, where I really want to communicate, I can. It is horribly flawed speech, but it’s speech. I did not do any writing when I was with them yesterday morning.

They are very nice folks. They wanted to pay me and invite me to the party. I declined on both counts. I told them gifting is great for me because I can’t communicate with words very well. We worked out that they will pick up the cakes, help me with the assembly, and lend me a pizza peel. We’ll use two peels to add layers to the cake, and Brent will make boards on which to present and serve the cakes. I suggested to Dana that she pick and dry flower petals and that we put fern fronds and dried petals on the board edges under Saran wrap, so that they platters look pretty on the table.

Aidan and I had a very thoughtful and practical discussion about our project. We are an excellent team. I sent him a lot of material that we will discuss on Wednesday at our usual time. It was so amazing, I wrote a long, long email to him on Sunday night, and a key part of it was wanting to address banking access for dysfluent people. And out of the blue, Aidan wrote to me yesterday saying survey results are also pointing to banking as problematic for stutterers and for other dysfluent people. We think alike, even separately.

I feel unlocked now, because of how I spoke with Dana and Brent, and because I can say words to my pets. So, I seem to go in and out of lock-in. I’ll get used to this horror of never knowing what is going to come out of my mouth or not come out of it. What matters most to me since the onset of these troubles, is Sheba. I’d be lost without her. 

Another light shower last night has me very happy about the state of my garden beds. It’s been such a dry Spring. The forecast is varied, with lots of cloud and some predicted showers, but at least the relentless sunshine is over for a bit. (I can’t believe I feel this way, actually wanting rain at this time of year.