More Rest; Better Speech

Saturday was, no surprise here, sunny and bright. All I wanted to do was read and rest and to have more Pad Thai for dinner. I gave myself the entire day to chill after all the recent turmoil of muteness, a clinic board meeting, my disability assessment, and an epic day of cooking on Friday—plus the party itself. 

I started my day with an epic job of doing dishes. Then I had a lovely long leisurely spa in the brisk morning air. That was followed by a walk with Her Highness before coming home to settle onto my chaise with Bruno. I love these Bruno books. I love all the French names, the food that is a huge part of the book, and the landscapes that are so vividly described. It’s like being in France when I am with Bruno.

The severity of my speech crisis is less of a handicap now. I’m back to being capable of communicating in person around home. I’m very relieved. I wonder if stopping clinic work has helped. I wonder if being outside in October in glorious sunshine and temperatures in the mid-twenties helps. Who knows! But something is making me rally.

And now: Sunday! It will be another day of rest and relaxation, but I’ll also do some watering. It’s unbelievable that I am having to water the gardens in October!

I’m going on the big community dog walk today and then, this afternoon, I’m planning to take in the Apple Fair on the Commons. It’s something interesting to do and it’s a lovely annual community event. Then tonight, I finish my delicious Thai food and watch movies. 

Great Phad Thai

This is one of five egg crepes I made.

This is what becomes of each crepe.

Screwed up: shot in black and white. Finished Phad Thai.

We walked yesterday morning with our friends. It was a chilly 9°. It’s gloriously sunny, but morning fire season is here. My speech has always been at its best with my fellow dog walkers whom I see three-to-four times a week. Yesterday it was possible to say words one at a time. Polysyllables are impossible. Here’s an example of a ‘sentence’ I was able to say: “Steve … ex… go… Italy. Me … talk….video.” One word that’s impossible to say is, “I.”

It's very frustrating to hear people talking about, for example, the clinic. I dearly wanted to correct their mistaken impressions. I wanted to stop the circulation of misinformation, but I can’t do that. I can say very simple things with difficulty, but to say anything complex is way, way beyond me.

Once back at Pinecone Park, I got to work on tidying, cleaning, and preparing all the ingredients for the Phad Thai. I started with the most time-consuming part—making egg noodles. I used a dozen eggs and whipped them like mad with garlic, fish sauce and salt. It took me almost an hour and a half to make them, I first fry some of the mixture, making very thin crepe-like pancakes that I then cut up into strips and I lay them on wax paper. They get mixed in with the hot noodles when I cook everything up.

Making dinner took a very busy 4.5 hours. There was so, so much to do. Making the sauce took 50 minutes. Making Phad Thai from scratch is an extremely time-consuming thing to do. But I did it. However, I was not at all confident in the outcome.

One funny thing happened. The sauce requires palm sugar, and I bought some last Wednesday. I knew that I’d bought some because it was on the receipt, but I couldn’t find it anywhere in the house or in the car (in case it fell out of my backpack). So, I had to tear into the village for more yesterday—a day with precious little time to waste. Later, when getting the ice cream to add to the Apple crumble, I found the sugar I’d bought in the freezer.

When it came time to eat, I cooked the noodles, tofu, shallots, garlic, dried shrimp and sauce up in one wok, while François, my sous chef, cooked the prawns. When my mixture was ready, I dumped it all on top of the prawns in François’ wok, and then he plated the two servings we did at a time, topping each dish with lime juice, a few bean sprouts, chopped garlic scapes, and peanuts.  We put the completed servings into a warming oven, and then did two more servings. We were a perfect team.

Then we sat down to eat. I realized I was serving food that I hadn’t eaten, so I was nervous. I hadn’t made Phad Thai for probably 30 years. But it was delicious—really, really good. And my guests ate every single spec of it, and all the salad and nearly all the dessert. It was a super successful evening.

They left at 9:30 and I flopped onto the couch to recover. But there was something else: I had been able to communicate quite well. I use key words, as exampled above, and felt I was there—that I as part of the party. I listened much of the time, but I did tell a few stories as I have always loved to do at parties. I’m still in the worst condition I’ve ever been in, but I’m not mute in my own home with trusted friends. That is a huge relief.

Today is for rest, one a mega mess in the kitchen is cleaned up and an army’s worth of dirty dishes are washed and put away.

Dinner Party Day

Friends, true friends, make living worthwhile. I’ve been overwhelmed with gratitude to sense that my friends will stay with me. It makes living mute bearable. 

I’m drafting an email for Dyan and Nancy about my speech and how I might function with the clinic board and committees. I’ve had thoughts of quitting, but I think they’ll help me work with them. I may even join the board—if they want me in this condition (and I think they will). On the plus side, the board can justifiably take pride in having a disabled person in their ranks.

One wonderful thing regarding my clinic work, is that Nancy is taking my article, Self-Managing Your Health Care, an article for people without doctors, to the doctors to get their approval (and suggestions) so that we can put it in our newsletter. Baby steps. 

Yesterday, our BC government announced some good news! One: Pharmacists will be able to renew prescriptions and issue some as well. Also, they announced massive infusions of cash into the medical schools of UBC and Simon Fraser universities. Big baby steps.

Initially the board would not consider my article because it was impinging on the territory of our doctors and a no-no. But, I countered, our doctors are absolute shite at communicating and I was able to speak to my own experience. So, this progress, with us asking the doctors for their cooperation on this article at a meeting yesterday morning, is progress—and its progress initiated by your humble scribe.

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Thursday was a terrific day, and there’s still no rain in the forecast. What a long slow beautiful end to Summer we are having!

I watered the gardens and then very happily hit the couch for some R&R time. All the clinic work of late, and all the anxiety over losing my voice completely had me feeling a desperate need for down time. I relished being with Bruno again, and lingering over lunch, before baking an Apple crisp for our dessert tonight. I’m hosting five wonderful gay men for dinner.

In the afternoon, I went into the village and bought myself a nice new cast iron wok in which to cook tonight’s dinner. And as I was mixing the dessert (Apple Crumble) I heard a honk in the driveway. It was François, bless his beautiful heart! He’d been into Nanaimo, and he brought be lots of bean sprouts. There have been none available on the island for days, and I was bitterly disappointed. But now I can make a great Phad Thai.

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I’m sensing a very slight improvement in my speech. I can say some single words. But it’s heartbreaking being unable to speak to Sheba. However, I can whisper to her, so that’s what I’ve been doing. Tonight, my little party will be odd, but I’m prepared for it.

I had a lovely leisurely day yesterday and I plan to do the same today, and I am going to pass a gentle weekend that includes the Apple Fair at the Commons on Sunday afternoon. I am avoiding clinic work for a few days in case the stress of it is one reason for the decline in my speech. 

Today I’ve to prep all the ingredients for the Phad Thai. It can’t be cooked in advance, so I’ve lined up François to help me cook the dinners. I’ll work the wok, preparing two servings at once, and François will top them with lime juice, peanuts, and prawns, and then pop them in the oven to keep warm. We’ll work together until all six dinners are ready.

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Sometimes, our modern technology simply stuns me. Beloved ex Steve is in Italy. I Facetimes him this morning at 7:30 and was able to briefly talk with him. He was in the middle of a tour of a winery that’s almost next door to the villa his friend Davina rented for a month. That’s where he and Tim, his partner, are staying. It was thrilling to see him and to be able, even briefly, speak with him. I’m going to try to catch him again later in the day.

Fucked

I am, by far, in the worst FND condition I have ever been in. I cannot do things I’ve always been able to do such as speak to my pets. I cannot even make a sound. I expect that this will pass, but right now I am totally mute all the time.

I couldn’t say a word in this morning’s clinic board meeting. I was exclusively reliant on the chat function. I thought I’d be able to say at least one or two words, but no! Right after the board meeting, I had my appointment/assessment with Dr. Shoja. I am obviously disabled and worthy of the tax reduction. The good news there is that I will get a tax refund for each year, 2016-2021.

I’m going ahead with my Friday night dinner party, but it may be very weird.  I’ll be relying on my iPad to generate speech for me if I am still mute then. 

My mind is buzzing with questions; chief amongst them is how I things work now with my friends. I’m concerned about an emergency. What will I do? I’ll be thinking about that over the next few days. I imagine, speech will return. I hope so, of course.

But wait …. I went to the market and saw Shelly and David. With them, I could say a one syllable word—barely, but I made sound. And just before dinner, I got words out with Leo. I believe that things will get better again, and that is going to feel very, very good.

I won’t be speaking at my dinner party. I know that. I’ll nod, laugh, try a word now and then, but mostly I’ll listen. I can’t really have a conversation. Even if I write notes, I can’t get into anything deep. Writing’s okay for help, asking directions, and simple things, but I don’t want to have a talk like I used to do as a speaker. I can’t imagine a discussion. 

I’ve been sentenced to living with myself. I feel isolated and I can’t see a way out unless my speech returns. This blog is where I speak. This blog is therapeutic. What really, really saddens me is losing the joy of my support groups. I can’t participate really. It’s just too slow and it’s awful to keep so many people waiting while I type. I’m going to write them a letter each week and post it in the chat feature. That’s all I can do.

I’m going to wait and see. What else can I do? And if my voice isn’t back in January, I may see if I can write a show. I’ve done it before. My students and I put on a 2-hour play with no speaking, except a narrator who read one poem and said only a word or two every ten minutes or so. A show about silence; a show about being mute. Maybe.

What fucking amazes me is that just keep going. I’ve not shed a single tear over the onset of FND. I’ve never felt angry or sad about my condition. Never once. I’ve been too busy learning and adapting to feel self-pity. I’m very, very grateful for my capacity to carry on.

To talk to someone henceforth, I need to schedule conversations on Zoom or Go To—preferably Go To because it is a free video chatting program that is new to me. It’s easy to download and install. I’ll be asking friends to download it because it has a chat feature, but no time limit as Zoom does. And we’ll schedule times to get together. It works, but it sucks. I fear my friendships are going to take a hit.

8:00 PM: To talk to the bank or my doctor, I cannot ask Jay. They can only talk to someone with my Power of Attorney (POA). Dwight has my POA, and so I called him. I knew I was risking failure, but in less than a. minute I learned, yet again, why this guy takes up so much place in my heart. 

He was eating by himself. He didn’t flinch when I tried my hardest to speak. I mimed that I’d go, that I’d hang up. But he repeatedly asked me not to go, to stay and be with him while he ate. And I could feel love in his voice. I knew within a minute that he’s my friend no matter what. And now I know all my trues and blues will stick with me. We had a back and forth. He is uber tolerant, and I said words with HUGE gaps in between, and I used a lot of gesture. My words sound hollow and fuzzy like the voice of an old flame. He was deaf.

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I’ve been here before—in this land of waking disappointment. I woke up this morning and went to say good morning to Her Highness and couldn’t. Oh yea. That problem. It’s still here. Another day of frustration.