Love Randy Rainbow

 

More rain, but light rain, and more clouds, but thinner clouds letting in more light. That was yesterday, and I was committed to a day of chilling after Thursday evening’s seizure. I was glad to be up to date with SPACE duties, and to have nothing on my plate until Wednesday, when I have a SPACE board meeting.

We didn’t take our morning walk until 10:00, and soon after getting back home it was lunchtime. But before eating, I booked my RSV, COVID and FLU shots. I’m relieved to have finally been able to secure all three shots. I had no need to go into the village, so I had a very easy day at home.

I was pretty much mute yesterday. I can say a single word or two sometimes, one syllable at a time. Nancy came by to check in with me, and I ran into Chris on the trails, but I couldn’t speak to either of them, neither could I call Sheba to the car after our afternoon walk. But I’m not fazed at all. Nothing lasts too long.

My new elastic waist pants arrived and I love them! I have another brand pair arriving soon. I am done with belts, buttons and zippers. Dressing is a new, more comfortable and easier part of my day. I love the elastic cuffs at the ankles that make getting into my rubber boots so easy.

Our evening was gentle. I love the heat of the fire, it’s crackles and, when I go outside, the smell of woodsmoke. I felt no anxiety on the chaise. Whatever is going to happen, will happen.

It’s a damp dark cool morning (6°), but sunshine is predicted for later in the day and that could mean I get out there to stack some wood. I won’t do it unless it’s sunny and I feel good about bending over to pick up the wood and to stack it. My back is prone to acting up, but I shall try to get some done today.

Bonnie and Sue, the lovely women I met last Summer and with whom I instantly bonded, arrive here on Monday. They rented a place to stay until they get occupancy of their new home here on the 11^th. I’m really looking forward to having them on the island. We get along extremely well.

Fuck! Another Baddie

The day was fine, I had a good, lazy day, happy to have completed a project for SPACE, the stuttering charity with whom I volunteer and for whom I sometimes work. The evening, however, was nasty!

I lie on a chaise longue because I have a damaged Achillies tendon in one foot and I can hang it off the edge, and I watch a movie every night. Last night, my restful evening was ruined. I had a seizure that was very physical and long-lasting. It hurt because the muscles that move my arms got a lot of action for 90 minutes during my monster seizure a week ago, and when I seized last night, those muscles were very sore.

When it stopped, I felt as though I’d been sedated, and then all sorts of physical jerking went on for quite a while, and then I had another very physical seizure. I have no idea how long the whole episode was, but it was many, many times longer than my seizures before the monster one last week.

Things in my head:

·      The monster seizure began in the dentist chair. I love that chair. I watch TV while she cleans. I was lying down and totally relaxed. Last night’s seizure was while I was totally relaxed on the chaise watching TV.

·      I have no control for the entire time. I cannot call for help. This scares me because I once had a cluster migraine that lasted for days. I have no control. I feel like “I” my conscious self, co-exists with an out-of-control monster in my body. Our body. “I” am on the inside feeling like I’m on a roller-coaster, saying, “Oh no. Oh no. Oh no, no, no.”

•

I have half an acre here. There was a lot of garbage on the property, and it had little soil and years of forest debris under the trees when I moved in. I fenced my backyard and landscaped half my land with garden beds. I spent a lot of money making my backyard into my own private park.

I read a biography of the first man found not guilty of a crime (murder) by reason of insanity. It’s one of my all-time favourite reads. He is so respected, once understood, he was given a luxury cell, was well visited, and became the largest civilian contributor to the first edition of the Oxford Dictionary.

My garden is the luxury of my cell. And my cell is made of logs.

We have a drought here that can begin in June, but is always here July, August and much of September. During that time, I cannot leave here or most of my plants would die. It takes two hours to hand water it every day. My garden beds cover land under giant Fir trees; the trees ensure all the water is used quickly.

That’s one excuse not to leave Pinecone Park. My treasured pets are another. We don’t like to be apart, and here’s the only place we can all be together. These excuses are my cover. They explain my need to be at home all the time, and that saves me from having to talk about my speech, my anxiety and my seizures.

•

On a streaming service I was watching last night, there is an advertisement that triggers me. I know now, when it comes on, to mute the TV and close my eyes.

It features a girl who goes to bad make-up Hell. Hell is depicted for the viewer through imagery that shows us make up fails. One of the images is of a woman in a dentistry-like chair and she’s shaking like she’s having a seizure. I’ve no issue with the advertisement. It’s my problem. But I hate having a severe emotional reaction to the image of her shaking.

•

I’ve had challenging psycho-neurological incidents in eight days. I’ve lost my confidence. For the next while, I’m going to be nervous on my chaise, which is my favourite place to be at night. 

I have a feeling that I should stop watching movies. Watching movies has triggered, I would estimate, 60%, perhaps even more, of my seizures prior to THE BIG ONE last week. I might be wise to stick to documentaries that don’t involve people being mean to one another.

Yesterday was rough on me. I’m feel that I’m losing a battle I don’t understand. I wake up now and wonder what’s going to happen today. I have eleven prescriptions and a pacemaker. I’m working hard to keep a body alive that is increasingly alien to me.

•

Last night, I called Dwight. That’s twice he’s talked me up from the depths to feeling far more functional. He is filling in for Dr. Shoja. I told him that, and he’s okay with it. We’re talking again, today.

RAIN!

It was 6° yesterday morning when I lit the fire at 6:00. Six at six. Fred and Sheba got together to wake me at 3:15! I managed to ignore them and stayed in bed for an hour, but I didn’t sleep. I fed them and was back in bed by 4:30. The house was cold and bed was so cozy and warm. Sheba slept beside me and I love it when she’s with me.

I got up around 6:00 and lit the fire, posted, visited some news websites, and then took Sheba for a morning walk. Although it was cool, it was a lovely fragrant Fall morning. I loved being out and about with her. We saw no one and I was alone all day, but we did go into the village for my prescriptions and to do some grocery shopping.

Then I spent hours on my SPACE homework, and I finished it. It felt good to get that off my plate. Now, I’m ready to move and stack some wood when the mood strikes me.

I was busy all day once my SPACE homework was done. No nap in the afternoon, no spa, just chores and our afternoon walk before dinner. It was a good day alone with the fire burning low all day. This highest temperature of the day was 8°!

Last night and this morning we’ve been deluged with rain. Walking will be nasty today. It’s as though all the rain we’ve not had over the past two years came to us overnight and this morning. It’s dark and shiny wet outside, and I have nothing to do but chill. It’s another day of solitude.

Crisis Not Quite Passed

Yowza! Day two, back to normal and it felt so good!

I was called to action by Sheba and Fred at 4:15. Sheba just stands beside the bed and makes quiet gurgling sounds, whereas Fred howls and stomps all over my body. Ethel is silently perched by the toilet awaiting my first flush so that she can drink nice fresh water.

After I fed everyone, I went back to bed. This is an increasingly common occurrence of late. When I rose again like Jesus, I worked on SPACE homework in the morning after I had walked Her Highness of course. We had lunch as we always do at 11:00, and then I wanted another wee nap. Go figure. This is not my usual thing. Monday, my first full day of recovery, I only had the morning nap.

It was a bright day, overcast with thin cloud. There was no rain, and it stayed cool all day. It was 9° at 12:30. It was the kind of day we have all Winter, unless there is a cold snap. But with El Niño going strong, we may not get much of a cold snap this year. We didn’t have one last Winter, and we had no snow.

I’m slipping into slob land. I bought myself two pairs of sweatpants. I love how comfortable they are and how easy they are to wear. I love having no belt and I love having pants that feel as comfortable in daytime as pyjamas feel at night. And to think that once, I cared about every piece of clothing I wore much of the time.

Late in the afternoon, Steve called, Dwight called and Pete dropped by. My time with them taught me that I am not yet ‘out of the woods.’ My speech is extremely challenging, and I can’t really sustain conversation for too long because when I try to speak, my face contorts and my arms and hands either lock against my body or shake. Whole sentences are hard. So, I use what I call KWS (key word speech). It’s a non-grammatical way for me to communicate. I say ‘key,’ or important, words that put together convey meaning. But my soul feels better. I am not in darkness anymore. I made jokes with Pete.

Because my speech was so challenging and physically uncomfortable when I was talking here, in my home, with my pets, functioning ‘out there’ is going to be uncomfortable. 

We have a very well-known young man on the island. His name is Robert, and he’s different. I went to the Christmas panto once, to support local theatre, and the whole experience made me want to kill myself. It was saved, for me, by Robert. He was having the time of his life. He was near the front and he was often calling out to the actors. He was radiantly happy, and that made me very happy at Christmastime. 

Robert gets Summer work at Nester’s, and he’s always in town, usually wearing headphones. Everybody knows him, everybody loves him. I see him as very lucky to be growing up in this community. We’re old, we’re mellow, most of us anyway. So, I know if I am grimacing and contorting, I will be supported too. 

One of my biggest problems is a memory. It occurred when I was between four and nine years old. Connie took me with her to visit her friend. I was put in a room with the woman’s daughter where there were biscuits and lemonade. The daughter was in a wheelchair. She had Cerebral Palsy.

I had no introduction at all. I had never seen a person with visible physical and communication disabilities before. I have no memory at all of what went on in that room for a good hour or more. All I remember is the panic.

I could not understand her verbalizations. But I could not leave. What killed me was the cookies and lemonade. There were two glasses and a lot of biscuits. I felt that I could not take anything from the table and consume it in front of her. And there was no way that I was going to attempt to feed her. The food remained untouched.

I felt freed when Connie and the mother came in. I stood up, and the mother said, looking at me and then at her daughter, “What? Wasn’t anybody hungry?”

Something like that. I can’t remember exactly what she said, but I remember that the first thing out of her mouth was about the items that were so problematic for me. I felt ashamed of myself. I also remember being horrified by the daughter. I knew I was to be polite and kind, but all I did, I fear, is sit there silently. 

It’s these experiences that are affecting my relationship with my new symptoms, all of which began post massive seizure. I’m glad I have a iPhone. I’m getting the feeling that, yes, I got my joy back, but I’m not over the impact of the seizure. Here I go, adapting, yet again to new symptoms.

•

When I met Bonnie and Sue this past Summer, I was sitting alone at a picnic table eating fish tacos from the food truck in Silva Bay. They introduced themselves as a couple and we started talking. After a while, referencing their introduction, I told them I was gay, and one of them said, “We know that. That’s why we asked to sit with you.”

I wonder, how did they know—my big white Poodle? Not long after starting our conversation, one of them very, very gently asked me about my stutter. That is when I fell in love with them. That question allows me to explain myself, very briefly, and from then on, in our relationship, I will feel comfortable about whatever happens to me. And they are moving into their home on Gabe in less than three weeks!

That was a valuable lesson learned. I find most people focus on accepting disability, and that’s a good thing. But it also means that somehow it becomes rude to ask person about their difference.  But asking and giving me a minute to explain my speech frees me to be understood.

•

This morning, it is coal black outside, and wet. We had rain last night. I shall struggle along with my SPACE work, and I will go into the village to pick up three medications including Lorazepam. I’ll feel safer having it around.

Once I finish my SPACE work, I am going to do some Winter toting. A lot of the wood from the tree I had felled in September is small enough for me to bring into the shed. I have cleared a wall to stack as much of the felled wood as I can, and I shall attempt to split some of the large rounds. 

The Amazon from space.