Tuesday or Wednesday I had my visit from the cat group. They have gone into children’s hospitals, and they go to nursing homes, I am their first personal visit for I guess people who can’t get out much. The cats have all the shots and a ‘passport’ (I assume that is for health?), and then have to pass a series of personality and how they interact in groups and loud noises. The cat which came with her owner was some long name but we just called her Hooch.
Hooch was very interested in exploring (and shedding, NOW our place feels like we have a cat!), it really did like to see everything. I liked the cat just being around, I didn’t need to have it bond with me. Because it didn’t. It would rub up against Linda or the owner’s legs but whenever I picked it up it never even looked at me. It never even checked out my socks or my legs which the owner said it ALWAYS does. The owner was somewhat mortified and wanted to bring another cat next time. I told her I liked Hooch, I could tell what she was thinking very quickly. But she could SEE me far away but not close up. It was very strange. Linda was telling her about how animals and kids like me. I think Linda was a bit embarrassed too that she had set this up and this cat didn’t want me, one point it hissed. I was fine with it, as I know that the first rule of cats is, they don’t do what you want them to, they want to do what they want to do. I moved the wheelchair to see if Hooch was frightened by the wheelchair and then I dangled my hand, and it would see it and come, but then as it got close it would walk right by.
Finally, I figured out what the problem was: I have no scent. I do not sweat, not in my hands, not in my fingers: nowhere. So what I eat doesn’t come out in my sweat, I have no scent whatsoever. I am like a tree. Poor Hooch could FEEL the fingers but it was like being picked up by a ghost. It didn’t rub against my legs because it couldn’t tell the difference between them and the furniture, they had no scent. So I went and got some of my older wheeling gloves, the ones I would wear for badminton and I had her sniff those and suddenly it was like she should see me. She came to me, she let me scratch behind her ears because she had a scent. I told the owner next time I would wear the gloves the whole time. Hooch, now that I was around, didn’t want to go, also wanted to see more stuff. So the front body carrier she was pushed into, she kept figuring out ways to stick her head out. And the owner kept stuffing the head back down. I know, cats doing something unpredicable...who would have imagined? I felt bad for Hooch – find a place that has lots of little spaces to explore and you get your head stuffed down. Linda on the other hand thought it was like watching pop-goes the weasel. Linda doesn’t identify with the cat, that’s just her way, growing up on the farm. For me, I like to know what makes each individual animal scared or happy and try to have a positive interaction.
The pictures above are NOT good pictures of me, or rather they ARE, they are pictures of how I used to look before I got a lot sicker than I was then, a lot thinner. After two nights of no sleep and a bowel evacuation which INCLUDED food eaten but not yet processed I was, and am now looking at coming off a week where I was lucky to have a meal a day, missed two days entirely and now have not processed any food since Sunday. It is not pleasant having the cramps but less pleasant watching bite size portions of meals you just ate hours ago, or half a day go coming out of you. And having a fever while you watch, and moan. You don’t need to have someone tell you that something is very wrong.
I thought, the next day, after the fever finally broke that it was okay, but last night, with a night nurse here, it started again and I lost all food I had eaten that day. I was eating and yet starving to death while working hours on the toilet and though I look thin with cheekbones and collarbones in the pictures, it is nothing like now. I had a high fever, my autonomic system unable to regulate many systems at a time. I slept, and slept. And drank gatorade to get some electrolites in me. The first few days I had been dizzy all the time and that came and went sometimes when the fever was bad. But it wasn’t an ear infection, just a loss of ability of my body to send blood to all the portions of me. This day it was smoothies and soap, anything to keep nutrients down and better yet, have them maybe stay long enough to give me strength. The night nurse told Linda she was shocked at how weak and thin I was in just three days (when she last saw me).
Too late for a hospice, I was fearing, and each day another blaster of a hot cloudless sky. The heat made my arm expand SO FAST it burned the metal clasp of the watch into my arm, just like a brand. And I keep it loose for when the heat makes it expand. I was scared, because it seemed like the wheels were stopping, and things were shutting down and I wasn’t ready for that. I wanted to go back to living on the border; I mean, yeah, I stopped breathing for two hours on the weekend, which is never really a good sign, when people have to breath for you, or devices have to, or when you can’t become conscious. Linda was so angry at me, when I finally could sit up. And I told myself never again, never would I make her watch me lying on the floor for over two hours, cold, pasty. Except now...
We each have, in our own ways, been saying our good-byes. I thank Linda, she thanks me, she touches me/she doesn’t, she cleans for no reason. She is scared, she had thought we had a year, a year is a lot of days only now I get worse each day, dramatically worse. I am scared; once I go to hospital, I believe I will not leave, my body will not rejuvenate itself anymore, if it does not do it tonight how many days do I have?
My urine has no color, it is transparent, this is a sign of kidney failure. Linda checks my eyes for rings, though I still have a fever, and am rather loopy; yellow rings will tell if there is toxin build up, then the jaundice. We watch the pee, debating if this one has a slight tinge of yellow.
Autonomic Failure attacks the basis of all medication. Medication is based on the idea that through an accident or experimentation, if you give the body X, the brain will tell the heart or some other part to do Y. Except that is the part which is liquefying, and a jumble. I take a dose they give ‘grandmothers’ for beta blockers and it makes me comatose. I am supposed to take 1, then 2, then 3 of stool softeners. It will do nothing to my bowels, I am told. Cheryl gives me .25 of ONE pill and three days later the cramps after 12 hours of taking dumps are still going, even with nothing left to go. I go into the hospital and they will find many, many things wrong and unless they have a doctor on hand who understands exactly what that means, any medication they give me in a normal dose is as likely to kill me, or cause a cascade reaction as help. A blood transfusion would, as it is not anything which requires the brain to intervene.
We hope the second night was due to an inflamed intestine and raw vegetables from a salad irritating it. We hope. I hope. This is nothing about fighting against the dying of the light. This is biological, exhausting, passing out, in one case I shat myself, literally (a horrid experience) and knowing each day that knocks me down farther will take 2-3 more to get back up. We have been using up a lot of Florastor in hopes it can help me absorb SOMETHING. If you want to help, it is toward the bottom of the wish list page.
I had wanted to go to a different farmers market this Saturday and take pictures for you all. I will be in bed. We are going up away, while they do construction and demolition here, and it was to be a time of together. Right now I am still going in an out of fever. Will I still have it when we go up island? I just want to go back to having no energy and fighting with it all, fighting with trying to get help. I want to go back to being able to push back my nap an hour and get a lecture. That’s is now the good life. I dreamed I was sword fencing. It was a dream; that is not the good life for me anymore. ANY life where I can be with my online friends, where I can have enough energy to write them, and to read what they write me. ANY life that has Linda in it and Cheryl (even if that is me hiding, too tired to fight). That is the good life. Please, please let me not crash tonight but sleep in a bed for the first time since Sunday/Monday.
This is what good-bye and being terminal or having these episodes is about – it is just hundreds and hundreds of minutes of wondering and fear. Hundreds and hundreds of minutes of trying to do what you can and hoping that is the right thing.
I want to be here, where I am. And this week, if I can stay at home, I guess less postcards will get done. Maybe they will bring the stuff to my bed? But I had wanted to send out lots of presents. I like sending out stuff. Children like presents; they like to get them yes but they like to GIVE them too, from objects to hugs.Little notes of ‘I love you.’
That is what all those things I send mean, they mean, ‘I love you, I care about you.’
I don't have big dreams, but they are dreams. I realized there are shows I want to watch with Linda. Plans I had made for both of us and not told her. But each day, as I get worse, and weaker, they crumble; maybe not a year but a few months, then maybe just a month. Oh God, let me read the manga I ordered; watch the DVD set I got? Let me make it Luminara.
Finally, 'let me make it to the weekend, when Cheryl can be here.' So many people left to send cards and gift to. I never wrote that letter to Cheryl and Linda. Oh shoot where did I hide that present for Linda? The realization this IS a body that is breaking apart, and I don't get to determine how fast. Yeah, so now I will sleep, hoping that tomorrow takes me one inch closer to the ‘normal’ of being terminally ill. Only now do I realize how much I depended on that slow decline, that almost static state.
I do not know what lies ahead but as long as I am here, I write. I pass through each day, each benchmark, each Torii, looking ahead to know that there is another. Hoping and believing there is another. Linda talks about making sure I get my food by time X….once I get better, because spending too long looking at now hurts too much. She moved furniture today, redid the whole living room.
I guess I cover myself with plushies and hope for the best. The soup is staying down (knock wood). I wish I could wake like this, covered in a litter of exploring kittens and mother trying to get them back and keep them from crawling away and all over (good luck!). That would be my dream. It isn’t big things when your don’t know if your organs are shutting down for good, it is the small ones that matter so much.
4 hours ago