A Lesson to Remember

I can’t help it. I will watch this when it comes out. I love the story and Tom Hanks always does such a great job of his roles.

 

Thursday was glorious. I felt great as soon as I woke up, and then there was that spectacular sunrise that seemed to echo the warmth and colour I felt inside me. I hope the insight about panicking being the problem, not my speech, will come immediately to mind the next time my speech takes a sudden and inexplicable decline.

Sheba and I met Di for a walk along Brickyard Beach yesterday morning. It was a nice change from our usual forest walking. There’s so much light and such an expansive view when we walk along the beach. It was a lovely way to get the day underway. Then I went into the village to do some shopping.

When I turned onto Wild Cherry on my way home, I saw Neptune eating grass at the entrance to Dianne’s yard. Neptune is Dianne’s horse. So, I stopped and spent half an hour with him and with Gem and Spirit. Gem is the female and Spirit is her baby (a mule). Spirit is now a dear and delightful friend. She is so, so sweet and friendly. I was in heaven. And Buttons, the goat, is a dear as well. I love going to Dianne’s place!

And when I got home, the power went out, but not for long. And when it came on, there was a pleasant surprise awaiting me. I received an email from a board member of the clinic whom I don’t know, asking me to do some writing for her and her committee. This is outside my work with Dyan, so word must be spreading that I’m a decent wordsmith and it can only have come from Dyan. It made me feel very good. So, we’re getting together on Sunday afternoon so that she can explain the brief.

The rest of the day was blissful. I was in terrific spirits, so very, very happy to be free of any concern about my speech. I could feel myself improving. To celebrate, I made a pan fried a pound of prawns and sprinkled them with paprika and then made a delicious alfredo sauce—a sauce I’ve never made before because I thought it too rich and bland. This one is rich and very, very tasty. And there’s more for tonight.

•

My friend Dona has gone to ‘say goodbye’ to a friend dying of cancer. I was walking yesterday morning with Di, and it was Di who told me. And that got us talking about death and dying. I’ve thought about death many times. My friend Andrea died when we were in grade eleven. They always come to mind when I think about death. 

At one point, when we were both silent, I asked myself: I wonder what it’s like to live every day, knowing you are dying. And what instantly came to mind right after that was that I think about speech obsessively when I’m alone. I carry on, but consciousness of my speech dominates my thinking. I can’t stop because my speech and seizures, and my vulnerability to stimulus—the package—it dominates my life because it’s changed how I relate to my environment.

It's not dying, but it’s living with consciousness of a changed status, a changed relationship with living. 

Writing about my condition here is where my experience and research become words—words that become how I explain my condition to others, particularly to my fellow members of speech disorder support groups. I drive a lot of discussion in the groups by sharing insights that I get in thinking about, and then writing about, my life with FND. 

When my voice crashed on Sunday. I took me a few days to remember that it had happened before, and then I recovered to a different normal. Sunday’s crash made me realize that it’s not the crash, it’s the panic that is the problem. I hope that I remember this lesson when I have the next crash.

•

Last night I watched Our Ladies on Netflix. I thought it was hilarious. It’s about a raunchy group of rebel and rural Catholic girls on a weekend rampage in Edenborough. It’s raunchy, but it’s about teenagers, all endearing young women. I lust loved a lot about this movie. A fun, fun movie for a warm Summer night. Pure entertainment; nothing deep. 

I was a good boy. A good Catholic boy who never ever touched a drop of alcohol until I reached twenty years old. I had four beers in 1968 and then no liquor again until my forties. It was fun to see a movie about ‘bad’ girls and how the other half behaved.

I Stutter. But I Need You to Listen. | NYT Opinion

The best part of the film above, sent to me by Juliette, is when he says how people saying 'take a deep breath' or 'relax, take it easy' worsens things. My problem is blocks.

•

I’m so, so glad the bat is gone and that the cats are protected. The bat people think that I have bats in my attic because the bat of this weekend was my second and that is very unusual. So, the cats will get another shot in a year, and I will keep them protected henceforth in case there is a bat cave in my attic.

And bless my forgiving cats. They betray not a bit of anger about the crates, the drive, and the shot. They reverted to their normal selves once they were home and we’ve had lots of petting and purring. I am very relieved.

After the vet, Sheba and I took a long walk together. It was a beautiful morning for a walk. There was a slight breeze and moderate temperatures. It’s hot in the sunshine, but deliciously fresh in the shade. When we got home, I started the mammoth task of watering the gardens before coming in for lunch. I could hardly wait to stop watering and settle down with Bruno. Sunday was my crash, and every day since has been busy, busy, busy. Today will be my first day of true rest. And it worked, by the evening I was speaking better.

In December of last year, my voice got very bad. That’s why I started studying ASL. I thought I might never speak again, and that’s basically what happened again on Sunday. But I’m gaining ground. I still have recovering to do. I’m a long way from where I was last week, but I feel very optimistic. 

When these sudden declines happen, I panic. It’s understandable, but I’m over that panic now. I’ve become so used to this constant variance in my ability to speak that I don’t care anymore. Yes, it’s inconvenient. Yes, it slows my ability to communicate and forces me to write a lot. But so what?! It doesn’t hurt, it’s not life threatening, and I can always communicate. I knew that if I waited a bit, things would be better—either my speech or my attitude would improve.

This morning began with the most beautiful radiant red sunrise and all my gardens are watered, so today, the entire day is mine to do as I please. Today is a true day for just chilling.

Bat and Shots

Well … Tuesday. The morning wasn’t easy. The GROWLS people practically demanded that the cats be given rabies shots, so I went to the veterinarian to see about an appointment. Whereas I was able to speak to Pam at GROWLS well enough to communicate my situation, speaking was impossible at the vet. I tried hard to get things out and it made me have a seizure. I’m pretty much going to have to rely on writing for a while I expect.

Just past 11:00, Liz and Carol from GROWLS arrived to help search for the bat. We couldn’t find it, so they left me with a butterfly net and hopefully I’ll be able to get it out of the house tonight. My poor cats are freaked out. And I’m freaking out too: I’m dreading having to put Fred and Ethel into their carrying cases and take them to the vet for their shots. This is not how to relax. 

After they left, I started burning the gazillion cardboard boxes that I had thrown up onto the loft. The kitties love cardboard to chew and hide in, but they are excellent places for a bat to hide, being high up in the loft. So, they are gone. I cut all the boxes up into bits and burned them. Carol and Liz advised me not to recycle the cardboard at GIRO in case of there being bat saliva or droppings in them. After cutting and burning them all, I sterilized my hands. 

Once all that was done, I went outside to take in my laundry and saw David next door. I told him I had a bat and was delighted to hear his response: He is willing to help me catch the bat tonight as his business, prior to moving to BC, was owning an exterminator company! He’s willing to help me catch the bat if I fail tonight. Can you feel my relief?

But fuck, what a day! It wasn’t the calm, slow, easy day I wanted. Not at all! I had a dinner date with Dan and Steve scheduled for tonight, but I cancelled it. I also skipped attending the clinic anniversary party. There’s no way I can socialize in my current state. Besides, I have a bat to free tonight. It was tough, cancelling at the last minute, but I truly hoped today might see some improvement in my speech.

Late in the afternoon, I went to the village for a new rake, to fill the car with gas, to go to the post office and to do some grocery shopping. And what a treat!! The rake was free thanks to my gift cards that I got when I cashed out my Aeroplan account. But even better than that was what was at the post office. I got a very lovely letter from Steve. He cares for me as much as I do for him. His letter is one I will keep forever. And … there were 20 Donna Leon books in the post for me. Eight more to come!

My anxiety was high as the sun set. I had the butterfly net on the dining room table. I kept looking up … and waiting. And today I must take my cats in for shots. 

I used the phrase, ‘nervous wreck,’ a lot as I matured. I used the phrase to describe how I felt to go to the dentist, the principal, the person whose secret I betrayed. But that’s what I am right now, and it’s nothing to joke about. It is very intense. If I were a woman in Salem and they called me a witch, I’d believe them. A demon has taken over my body and mind. Fuck.

I want to ride this out for a while, though. Beth says I should call Dr. Shoja. I don’t need her yet. I want to see if I can get some recovery by staying alone and minimizing speech. I can deal with this for a while, but if I start to lose faith in recovery, I will call Dr. Shoja. I know that she can’t fix my speech and turn down the intensity, but she takes away the pain.

The grocery store is pregnant. There’s a second store growing in the isles. Every square inch is filled with merchandise. There isles are full of crates and because a store employee was intently involved with a screen and standing still to read his device, I waited patiently for him to move. He gave me a sort of quizzical look and returned to his device. Then he looked at me again and held my gaze. Then he said, “Can I help you at all?”  It was the ‘at all’ that hurt. I wish I knew why. 

I pointed at the Diet Coke, and he excused himself. I grunted noise trying to say ‘thank you.’ And then I kind of bow my hands held in a prayer position. That’s how I say ‘thank you’ when I am truly grateful. I did it to appease the source of his slight.

I was loading up my basket with a big load of my elixir of life when I felt a tap on my shoulder. He insisted on finishing filling my cart, and as I left, he patted me and gave me a warm smile. I can’t tell you how good that made me feel, given my current state. So, later, after a futile search for the Maple Syrup, I saw him and with enormous effort, got the word ‘Maple’ out, and he guessed the rest.

I’ve forgotten all the ASL I learned, and now I wish I knew it. It’s just too much for me on top of all the other things I must do during Spring, Summer and Autumn. I have a nice leather shoulder bag. It’s thin and handy for the pad and paper that I must carry with me all the time. And I’ll be taking pre-written notes to people and using my ‘mute’ business cards.

When you’re sick, people tell you to be optimistic, but at some point, if there is no recovery, I’ll have some adjusting to do. It’s then I may call Dr. S.

People with FND manifest their condition differently. I can’t conceive of a typical person with FND. I am of the world of Oliver Sacks. Little did I know, before I fell in love with the guy through his books, that I would be one of his people. 

This sudden shift for the worse is the worst aspect of living with FND. Having the condition is as to be a large piece of land right above tectonic plate subduction zone. Every so often there’s a big shake up and damage. This is my fourth or fifteen sudden worsening.

At 10:00, there was no sign of the bat. I did not expect that. He could have escaped by the way he got in. He could have died from rabies. Fred and/or Ethel could have got him. I’m glad they’re getting shots.

•

As I post this, I am just back from the vets. They howled like Satan the entire way to the vet and back, but they took their shots very well. It was massively stressful for all of us except Sheba. Once home, all was well again, but their trust in me will need rebuilding. I’ll be doing lots of loving of all three of them tonight. 

Bat in the House

I watered thoroughly after several days without having to do watering, and then I decided to treat myself to a lunch in Nanaimo. Sheba and I went as foot passengers over and back, so the trip was free for us and a bit of an adventure. I did everything using a pen and pad and I wore my ‘Mute: Silence is Golden’ t-shirt. 

On the ferry going to Nanaimo there was a family of three kids, their parents and puppy. As it was my first time on the new ferry, I wrote a note to ask them where the dog area was. I showed it to the eldest daughter, but she just looked confused and so her mother stepped in and signed to me! She signed and gestured her answer. I signed that I could hear, and then we started talking and the daughter to whom I’d first shown my note, apologized to me saying that she has trouble reading cursive writing. That shocked me, but I had a nice time with the family.

When I got back home, I went to bed. I was beat. And then I had a spa before doing the rest of the watering, before spending more time with Bruno before eating dinner. Then it was very early to bed, but I decided to read a bit more and as I was reading, a bat flew into the bedroom, so I got up and watched it fly around for half an hour, hoping it would fly into the bedroom where I could open the window and help it escape. But it wouldn’t go into the bedroom.

This morning I called GROWLS, the animal rescue society on the island and so now I wait. They are likely to bring me a butterfly net to use to try to catch it tonight. I’ve no fear of bats, but I don’t want to hurt it trying to catch it with a towel, and I don’t want to touch it in case it is carrying rabies.

The good news is that I managed to talk to Pam at GROWLS. It was brutally hard to get speech out, but she could understand me. I called hoping to be able to leave a message. I was ready with my speech generator, but Pam answered, so I had to try to speak. I was pleasantly surprised that I could say whole sentences—they had long gaps, but they came out.

I have nothing planned for any day this week. I don’t have anything on my calendar until the 31^st and that’s only a video chat. So, with every day to myself, good weather in the forecast and no pressure to do any writing jobs, I hope to get back to speech levels I had before this latest decline.