Myoclonus

Monday started off so beautifully, but then the rains came so I didn’t do any work on the fence.

Instead, I bagged Styrofoam in the shed. I had the doors open and worked for over an hour wearing just a t-shirt and no coat or sweater. It’s just wonderful to be so warm outside. And it was so bright late in the afternoon. I loved it.

As I have every day since moving here, I lit the fire first thing in the morning and now I keep it low — constant but only one piece of wood at a time. And today I had to open the windows it was so warm because the outside temperatures have been so high. Yesterday was 14°; today was 11° but it’s remarkably warm with a fire.

I got rid of seven bulging regular-size garbage bags and one industrial-sized garbage bag of Styrofoam thanks to Jane, a delightful young woman making a living taking Styrofoam to Nanaimo. I was smitten immediately. It’s like she stepped out of a 1940s film. I found her radiantly beautiful without any makeup, just a beautiful soft smile and curly blonde-red hair held back with a folded bandana. This island is full of gentle souls.

And speaking of gentle souls, I have a man crush on Nicholas, another islander who comes twice a year to change the filters in my water system. When I meet these wonderful gentle people, my speech is strong.

And I rested a twice. It’s a new therapeutic strategy. As my time with Drs. Morrison, Ramage and Shoja, the team at the Pacific Voice Clinic, winds down, a lot of practical information has been forthcoming. Last time, the rest strategy was hypothesized as a way to reduce the seizures.

I want to drive to visit friends on Vancouver Island but driving remains risky — not for others, for me! I’ve progressed so well with my seizures, I can pull over if one happens just as I did here last Saturday. When a bad seizure started, I got to Cole and Peter to have it instead of alone in the front yard.

Just as stuttering is a symptom of my C-PTSD, so is having a condition called Myoclonus AKA being myoclonic. I made Dr. S. laugh by saying, when she explained this to me: “Is that like being Masonic?”

It’s important for me to know that my seizures are myoclonic so that I can tell paramedics if someone calls 911 when I seize. It’s important that they know (and believe) that my seizure is not epileptic.

There are two kinds of myoclonic seizures: Positive seizures tend to be more dramatic and are a response to a specific situation or stimulus; negative seizures are milder and triggered by relaxation. (That’s why I feel crappy for the first minute every time I go to bed.)

So now, twice a day, I lie down hoping that by inducing a couple of super mild negative seizes that I won’t have the really awful positive ones.

•

Starting on Thursday, we’re supposed to have a week of sunshine. I want to build a garden in front of my studio and that’s when I may get underway.

Four more sleeps till Dwight and my ladies arrive.

Ed Stutters Too

I really enjoyed Crystal’s visit. Her kids are fantastic. They are superbly well adjusted and fully participated in all the chores without tonal, verbal or any behavioral resistance. They never once complained about anything. And watching Cole interact with them is a beautiful privilege. He is a prince, our Cole.

One great outcome of their visit was that Peter discovered that I have a convection oven. I had no idea; he showed me how to use it. It was a wonderful surprise!

•

After Crystal and family departed the sun came blazing out and it was 14°! That’s 14° in the shade! It was a brilliant day and I was stoned on the beauty of everything. And it’s supposed to be pretty good week. Today has dawned with lots of blue sky and big bright white clouds.

I’m learning how the sunshine hits my land and home as the months go buy. (Wednesday I celebrate the end of my fourth month here.) After each long spell of winter rain when the sun finally returns, it tracks a new arc through sky – new to me, at least, in this home. Yesterday for the first time sunlight shone brightly into my bedroom. I was thrilled to see that.

I considering switching my living and dining rooms for summer; where my dining room is now gets lots of sunlight. To put the living room there will be nice for summer evenings before eating outdoors. On rainy days, I’ll eat in front of a fire where I currently have the living room.

More sunny warm weather is predicted for Friday and Saturday — the days I’m to move my costumes from storage to here. We’re long overdue for some decent weather; if it happens, my ladies won’t suffer any further water damage.

•

Something wonderful has happened with Fred and Ethel. They are still dispassionate about being picked up, but in many other ways they are increasingly social and welcoming. They come when they are called and purr the minute I touch them or speak to them. And they like being patted now. It’s wonderful and I love them to bits.

•

I fell hard for pop singer, Ed Sheeran. Do you know him? I’ve bought all his CDs and I listen to them regularly. I appreciate the sincerity and simplicity of his lyrics; they resonate with me. He writes love and often about his family; his voice is beautiful, pure and true. I adore him.

Well today I happened on an article about him that made me weep.

He quit school because he was so badly bullied as a child because he was plump, wore large glasses and stuttered. My adored singer stuttered! He came to America with nothing but ambition and happened to be seen by a dynamo actor, Jamie Foxx. The rest is history. It just got to me, so deeply, that this lovely man is a fellow stutterer.

When I listen to him now, it’s terribly moving.

•

It’s remarkable to be here now. Everything is done now that the studio is finished and furnished and I’m completely moved in. I want to do lots of gardening come Spring but that’s icing on the cake as is completing the decorating of my fence. I plan to do some fence work today on the three fence panels facing the entrance to my yard.

Crystals' Visit

Gigi, Peter, Crystal, James and Cole (L-R).

My studio is furnished now. The sofa is a day bed.

And now the TV and DVD player work.

The fountain is beside my deck and visible from my office
where I spend so much time. And it's close to the bird feeders.

Crystal, her man and her family really brought Pinecone Park to life this weekend! There were five people visiting — three of them teenagers.

The day began for me at 3:00 am. (I went to bed early Thursday night because I was exhausted.)

The day dawned wet. No surprise there. We’d just had the fifth wettest January on record; 249.4 millimetres of rain. The day dawned blue with fog and mist until about 10:30 when the sky got a bit lighter. Birds swarmed my feeders and I took to the hot tub for my earliest soak ever.

They arrived late in the afternoon. They wanted a tour right away and loved seeing my spread. Everyone got settled into his or her room: Cole (20 in a month) and the twins (James and Georgia; 15) with me in the house and Crystal and Peter in the studio. We hadn’t been together for a long time so the first couple of hours were full of laughter and stories.

Peter lives in St. Catherine’s; Crystal and Peter are living through their last year of a long-distance relationship. Next year Peter will retire and move out here.

When it was time for dinner, Peter barbequed and Crystal and Cole prepped the rest of the meal. That would be the pattern for the weekend: Me doing absolutely no work. I just ate watched, tubbed and enjoyed the company enormously.

My speech was really rough most of the time and my back and neck muscles were ridiculously painful by Saturday night from a day and a half of stuttering. Crystal suggested I use my Rand voice, so I did and got wonderful relief. It’s curious to me that I never think to use it. It’s not natural and I don’t really like it but it is amazingly efficient.  I should probably give everyone the option of me using my Rand voice. It’s easier for my guests.

Saturday got off to a slow start. Crystal made breakfast for the crew and Peter got to work assembling my sofa bed for the studio. After breakfast Cole finished the table I was having so much trouble assembling and then they set up my fountain, got my DVD player working in the studio and Peter rewired the lighting on my shed.

I am so grateful for all the help. The fountain looks fab-u-lous. I can hardly wait to see and hear it working. The sofa and coffee table filled the hole in the studio beautifully and comfortably. It’s such a warm and welcoming space and Sheba loves to be on the couch.

At one point I went looking for her (Sheba) and couldn’t find her. I called everywhere and felt myself getting panicky. I found her just as I started slipping away. I got to the studio where Peter and Cole were and went into a ten-minute seize. In terms of muscle stiffness, it was one of my worst.

As happens sometimes, by body arches rigidly. I call it “rainbowing” because it’s like my body wants to arc like a rainbow with only the tip of my head and my heels on the ground while my pelvis tries to get high into the air. Afterwards, I needed to rest.

Crystal and the twins had gone for an adventure and missed my seizure. Peter, Cole and I were all in the hot tub when they got back.

It was such a wonderful day. My guests were so self-reliant and comfortable, I felt like part of their entourage; they were running the show and I very, very comfortably slipped into their dynamic. The men got out the women got into the hot tub and after that we had lunch. Then they all went off for an adventure while I chilled alone.  Sheba got so much exercise and attention from the kids and Peter she collapsed from exhaustion and fell into a very deep sleep.  

Come dinnertime, Crystal made dinner with Peter, Cole and I watched a movie, James drew and Georgia read. We were all so wonderfully comfortable just hanging together.  And the twins wanted to stay longer; how great a compliment is that. It was like being part of a family.

Sunday morning was about breakfast and packing. They left to catch the 11:20 ferry and after they were gone Pinecone Park felt horribly miserably empty. But then the sun came out, I had a hot tub and I took lots of comfort for the rest of the day from my three wonderful pets and leftover chocolate cake.

Ravens

It's hard to reproduce the actual volume of these Raven cries. I went outside late yesterday afternoon and this Raven was in my yard so he was extremely loud for me to hear. Their cry is so haunting, like a loon. Turn up your speakers to hear this guy.