Friday, September 30, 2022

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.

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.

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.

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.

Thursday, September 29, 2022


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.

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. 

Wednesday, September 28, 2022

First Clinic Board Meeting

Whoa, the learning! I’ve been so gung-ho about a signing incentive for the clinic, but it’s becoming extremely complex. I’m backtracking on a lot of my thinking as I learn more and more about government policies on the funding of doctors and clinics, locums and “return service” providers (foreign doctors who move to BC and re-train to become physicians here). It’s extremely complex.

Nancy told me today, that my questions and suggestions are making her realize how complex the task of training new board members is. It takes one hell of a lot of training to get new recruits into a position of meaningfulness for the Foundation.

Tuesday was another stunning day. Her Highness and I went for a lovely walk to get our day underway, and then we came home to lunch, and I had some time with Bruno. Then I got to work. I had to write out what I want to say or post in the board meeting this morning and to Dr. Shoja, whom I also talk to later this morning. Then I had a spa and spent some time with Bruno. Finally!

Something is wrong with my knee. It’s sore and has been for almost a month. Every day it swells up and it even hurts at night when I am in bed. I guess it’s my turn to have a bad joint. I know so many people who’ve had hip or knee replacements. I hope this isn’t something that eventually will require surgery. I don’t want anything to do with a hospital thank you!

And more bad news: I got scammed and I fell for it. But I realized my mistake quite quickly and phoned my bank and cancelled my credit card. A new one is on its way.

I’ve invited Dan, Steve, François, Eoin and Jay to tinner on Friday, and I’ve decided to make Phad Thai. It’s not an easy dish to make and I risk comparisons with our islands famous Phad Thai maker, Kenny. But hey, I’m up for a challenge that is a lot less anxiety producing than my work with the clinic.

Tuesday, September 27, 2022

Heavy Lobbying

Monday was emotional. First saying goodbye to the Roseberries and then seeing Anna-Mae for the first time in roughly 45 years.

I watered for the entire time between the morning departure and the afternoon arrival. There’s been precious little rain (one day) since mid-July. Plus, I got one article done—the hardest one—for the clinic doctors to peruse and approve. I’m hoping for rain tomorrow, but I’m not optimistic. They say there’ll be showers, but when they say that, there rarely are any on Gabe. 

After Anna-Mae left, I felt overwhelming relief. After three days of talking, I was burned out.  I began a short period focused on silence. I had a nice simple dinner before doing a lot of clinic work. 

I’ve been kind of overwhelmed by the amount of work I’m doing. I wasn’t complaining, but I am having to get used to a different way of leading my life day-to-day. The closer one gets to the centre of the storm; the more effort is required to stay grounded. I was on the verge of complaining out of envy for couch time. But I learned from gardening, not to complain about work. There is always abundant benefit in doing it.

My loved being a technical writer. It didn’t feel like only writing to me; it felt like problem solving. My work was the solution to the problem. You want to sell couches? Here’s what words to use. What to sell tickets? Here’s what words to use. Want to get doctors?

Here’s how I’m lobbying for a $20,000 signing bonus:

1.     Do you believe our positions are a challenge to fill?

2.     Would you like me to write a short paper explaining why I do?

3.     Do you believe that there is a lot of competition from other communities seeking doctors?

4.     Would you like me to write a short paper explaining why I do?

5.     Do you agree that we need to be competitive?

6.     Can you think of a better incentive and headline than a financial incentive to attract interest in our positions?

7.     If you think a financial incentive is a good idea, what kind of incentive do you suggest? And how can you make it work for the Foundation without lessening the impact of the lure?


Here’s a proposal: Advertising $20,000 bonus (to be named after thoughtful consideration—signing bonus, moving bonus, housing bonus); half paid on arrival, second half paid at the beginning of year two that binds the doctor to a second year of service. What I’m proposing is a plan aiming to retain new arrival for at least two years. That gives our retention practices two years to establish a beneficial bond and prolong service.

It's not an obvious pitch form. My pitches seldom are. That’s how I get attention. I love questions. I love asking them, particularly instead of being accusatory or judgemental. Questions are a research tool. Questions build bridges. Questions are inclusive. The board will have questions, I’m sure.

Sales, whether of items or ideas, is a game that can be played many ways. I play games with words. I solve problems with words. When I pitched myself for contracts, I called myself a specialist in persuasive copywriting. I’ve given you an example. Is my (self) advertising, correct?

“Helping” stutterers by guessing words that the stutterer is trying to say, or finishing sentences, is a big deal in the stuttering community. Most stutterers think it’s insulting and/or rude to do any of those things. Not me. I love it. When people do that for me, I’m happy. It helps me get past difficult words and makes conversation move quicker. 

I had my first experience with an oh, fuck! face. An oh, fuck! face is what I call the look I saw on a person’s face when I tried to speak to him. It was intolerable for him to listen to me. He was as frustrated as I was, but seeing it hurt me. This is new because this level of disability is new, too.

Me, Gene and Her Higness.

David at Drumbeat.

Gene's partner, Sidney. She is new to me and a delight.

Gene and I eating at The Surf. What a memory!

Gene and Sid.

Gene and me in Malaspina Galleries.

Gene, me and David in the gallery.


Me and my favourite man on earth.