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.

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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.

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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.