I was up at 6:00 yesterday morning. I wanted to be sure that I had time to water my gardens before Pete arrived to work on the deck. He arrived at 9:00 and we went to the hardware store to consult with their paint expert about the efficacy of paint remover for our job, and to get some blades for our scrapers. (And milk for his tea. He’s British.)
When we got back, we got to work. We power washed the deck, and then scraped it with metal scrapers, then power washed it again, then applied the paint remover (non-toxic), and then power washed again, but it was kind of for naught. It didn’t work very well. The deck is cleaner than it has ever been, and all the peeling paint has been scraped off, but there’s a lot of paint that did not come off the wood.
Our alternate plan is to sand it. That involves renting a huge sander, and if we use it, we’ll then have to paint the entire deck with a clear preservative agent. But this morning, I will go to our hardware store for a consult. If there’s a stain that we can apply over the semi-cleared wood and get a clean and tidy result, we’ll do that. Otherwise it’s 2 more jobs: sanding and sealing.
Peter worked mighty hard all day. I could not keep up. By 5:00 I could not speak at all. I was thoroughly drained from all the work AND from the consultation with GF Strong staff about getting help so that I can use the phone.
That part of the day, talking with the Occupational Therapist and Speech Language Therapist, was amazing. They recommend that I see a neurologist, so I am seeing my Nurse Practitioner on July 5th for a referral. It’ll. Probably take a year to see one. And I’ve applied to CAYA, a communication assistance organization based in Vancouver. They will help me, but it may take a year as well.
None of my tricks’ work right now. I can’t become fluent by touching my face in a certain way liked I used to be able to do. Nor can I speak in my Aussi accent. Plus, I’ve started sighing when I speak. It is so hard to speak, I sigh with frustration and sadness periodically. It’s like I’m fading away, disappearing. It’s impossible to say anything complex. All I can do is say simple things.
Here at home, I could talk to Pete. I spoke in a kind of pidgin English. By the end of the day, I could not really speak at all with him. I can be fluent if I whisper, but that only works in an extremely quiet environment. And I’ve become quite fidgety when I talk—not always, but I was very jerky when I was talking with the people from GF Strong.
I tell people I have joint custody of my arms and hands. I use them regularly, but when I speak, I lose control of them. My hands clench and my hands kind of wave back and forth, and my arms move in and out. This has always embarrassed me. Thank God it doesn’t happen all the time. But when three people are talking with me and about me, my symptoms ramp up and my arms and hands take flight.
The OT and SLT alerted me to a BC Tel program that sounds fabulous. Kris, my friend, is going to follow up with them. They have ‘Relay’ machines that allow me to type on them and then they speak into the phone for me. But they are much more complex than that. These two programs may eventually lead to my being able to use a phone.
I’m so challenged right now I have ‘the sighs.’ I feel frustration with every conversation. It’s torture to speak. I have speech generating apps. They’re okay. But it’s just not pleasant to be with speaking people when I can’t speak. I’m not happy in such a situation. I feel I’m an outsider in speaking company. My friends will stick with me. For as long as I can still talk, even with difficulty, we’ll Facetime and email. With them I always feel comfortable and accepted.
Another huge adaptation effort is required of me. I feel the need for Dr. Shoja. If that need persists, I will make an appointment. When I see my Nurse Practitioner for a referral to a neurologist, I will also ask for a referral for Dr. Shoja in case I want to use it.
There’s an irony in this story of mine. All this good news—the consultation with the Occupational Therapist and Speech Language Pathologist, CAYA communication assistance program, and the BC Tel Relay Program—all this came about because I couldn’t call BC Tel to ask if they had any suggestions about how I could use a phone, so I asked Kris, who has a cousin who worked at GF Strong and knew to call them. If I could talk well enough to make the call, I would not have any of these things in my life.
And there’s a miracle in my story as well. I’m frightened right now, and worried. At the same time, I know everything will be okay because my friends will stay with me, and I have my beloved pets. That’s all that matters. But I’m not sad or angry, and that is the miracle. I don’t feel sorry for myself, I just want to concentrate on finding new ways of doing things.
Kris is also a miracle. She’s with me on this journey. She is helping me with my calls. Right now, I am changing how I communicate with the people who monitor the alarm I wear. I want them to use questions that have a YES or NO answer, and I will clap once for no, and twice for yes.
Another irony. I belong to two support groups for people with speech disorders. The last thing in the world I want to do is talk about this change with them. I want to drop out of the groups for a while. I may join, explain what I’m dealing with and tell them I want to stay on the list, but I may be off for a while. I’ll see how it goes.
If I want to see Dr. Shoja, I will need to prepare an essay on why I want to see her. That’s on my to-do list. So is talking to Kris to do several things. I don’t want to burden people, but I need a way to cope until the programs, to which we’ve applied or are applying, provide me with an alternate way of using the phone.
There’s also a chance I could get back to what I was before this lapse in capacity, as suddenly and as dramatically as its onset.
The good news: Sheba is much better. She is her usual lovely self, but her paw is still sore. I have Menuca Honey on her foot and it’s wrapped in a sock. She’ll be over the sore paw soon. It was the dreadful thing she ate in the Nanaimo park that made her so sick, but that has passed. Her temperature is normal now, and she’s eating enthusiastically.
Today will begin with a trip to the hardware store for help in choosing what to do next. Pete’s given me his time until tomorrow. I will use my wits to see if I can complete any work left unfinished—with help, hired or from friends. Pete’s been unbelievably generous with his time and enormous effort. Yes, I helped, but he is an energizer bunny. He worked hard, all day, taking only one break for lunch.
We will finish the stripping of the deck today. What we do tomorrow is up to him.
How do I thank Pete? I reserved a room for 2 nights at April Park Lodge for he and Ali in mid-September. I’ve sent them a link to the lodge and their reservation details. If they like the idea, I’ll also set up a dinner for them on the first night. Kris will call them for me.