Little things, big differences

Tonight I am in muscle and bone agony, a TIA, and shaking because today I overdid it today in panoply (a magnificent array) of physical activity , so it seems I PAY (wow, I STILL have to PAY, that seems unfair!). It actually took me 20 minutes to find ‘panoply’ because with word salad and mental fatigue, these things become like rock climbing your own mind. I was going to try and explain what a fog (like a Parkinson’s Fog) is like, or what it is like having word salad or how not remembering beyond a day makes life frustrating, a challenge and similar to a skit of Monty Python. I started the day suddenly remembering that I needed to contact a dealer, and told Cheryl. Linda walked by, overheard and told me she had written him four days ago.

I seethed with resentment. Was it not enough that she was doing SO much of the contact with the outside world? Could I not be a forgetful twit on my own now and then? Then I found, she ‘forgot’ to mention that I was the one who had decided what we should tell him to put him off for a while and Linda who volunteered to write it up.

“Why did you SAY it like that!” I tried not to plead/demand. “I would have looked SMART then.”I don’t get to feel smart a lot anymore. It wasn’t 10 minutes later that Linda had to correct me on another matter and sort of slip she had been doing emails with someone else, something else I was in the dark about. So I talked to Nigel (that’s Cheryl: who gets called Ingrid, Iguana, Charlie, Beryle, Chuck, Erryol, Lucky and now for some reason Nigel), about a few things, I got word stuck, she was patient. Sometimes it takes me over a minute to try and force out a word which is the ‘wrong word’ – some words are so commonly wrong that they are just part of our vocab: (lip balm is now ‘kiss stick’, and ear plugs are ‘ear hugs’ – so before I sleep I get my ‘ear hugs’).

'When I use a word,' Humpty Dumpty said, in a rather scornful tone,' it means just what I choose it to mean, neither more nor less.'
'The question is,' said Alice, 'whether you can make words mean so many different things.'
'The question is,' said Humpty Dumpty, 'which is to be master - that's all.'
Alice was too much puzzled to say anything; so after a minute Humpty Dumpty began again. 'They've a temper, some of them - particularly verbs: they're the proudest - adjectives you can do anything with, but not verbs (though the looking glass)…

How to explain that the only thing you know is what people expect you won’t remember. People expect you to remember two days ago when you said, “I really want to do X”, but now I have no idea why they keep mentioning X and looking pointedly at me. “I didn’t burn it down!” I tell them just in case I did.

But today, I decided, as I had no home care, that I was going to do the laundry, so I sorted the laundry. Cheryl and Linda were going to go shopping for food (Cheryl was there to give Linda new ideas), and other errands. I offered to drive the car for them; much laughter (this happens EVERY time I try to be helpful). I used my special indoor wheelchair and did the laundry, then moved the stool and started doing the dishes, I wrapped up the garbage and wheeled that out (for me it means going out the front, wheeling about 250 yards, to the far end of the parking lot and then trying to force garbage bags directly above my head to push up the lid of the giant green dumpster, then a wheel all the way back to the sidewalk, and back in the front door). On to the second load of wash, while I went and hung the first to air dry, dried and put away the dishes from my stool and did the second load of dishes. Then I moved the stool back, moved a chair into the study to give more walking room in the living room where Linda and Cheryl are. Then it was vacuuming and airing the windows some done before going down and getting the second load of laundry which now seemed MUCH heavier than the first. In fact it was getting harder to think. I finished the vacuuming, then got the outdoor wheelchair out of the way after loading it with everything ready for a trip out.

By the time Linda and Cheryl came home I was dragging myself and the Gatorade bottles to the fridge, followed by putting away the soda cans and putting more selection in the fridge.

They suggested I come to the study so I did an invoice I had been forgetting for two weeks (post it note on my screen to remember!), and did the last of the paperwork for Booth-Gardner, and Xeroxed with the computer (many pages) and Linda took it to the post. It is now up to them to schedule the visits. We finished our side of everything, now just wait for the date to go to Seattle. By this time, I did not know what the word, “hot dog” meant, or “earring” or “living room.” Brain go bye bye (hope it had a fun trip!). I had the shakes very badly from the exertions.

Linda wanted to know, as she put me to bed, why I did it, and I said I felt as this was my last day on earth. And that we had been having so many miscommunications and so much friction that I wanted to do what I could to make our place a place she WANTED to come home to. A place clean, a place where the chores were done and she could relax. A place without guilt or frustration. I wanted to do as many ‘little things’ as I humanly could because…..sometimes little things mean big things. She was crying and so was I. From the shakes and spasms from my muscles which had done things they hadn’t done in a long time (Another problem with memory issues, you last remember being able to move a chair easily, so you move it! Turns out the ‘last remember’ was over two years ago), and thus I was going to pay and pay. I told her, it didn’t seem that I would be able to do the cooking tonight, and that I wouldn’t be able to do the dishes or the other stuff again, maybe ever.

Linda got up from bed and hugged me and told me that was the BEST news. She said she knew it was important to let me do things, she was very scared for me (my heart was a wee erratic by the end), and would rather I breathe and have a heart beat than die making her my Mexican Vegetables (but they really are very good!).

So sometimes, I guess, it is taking a moment out of myself, and deciding that I would do something no one would expect: every horrid and unfinished chore I could think of. And I think people are happier around here. That’s something I haven’t been able to do in a while, make people happy instead of sad when they look at me. Little things.

Here is the unbought wishlist (I know, greedy little thing aren’t I, and unsubtle to boot!), which ranges from 1 cent up!). I would like to point out that Jill Shalvis’ book, Instant Attraction, is now out, that is Linda’s favorite author! Linda has to deal with me 24/7, word salad, emotional liability, dementia, and try to be cheerful while she sees how much I have declined since last week or a few days ago. To sit and read this book makes her happy and it is delivered to her door. You decide if you want to give her five+ hours of happiness. Little things, big differences.

Thank you to everyone who has sent gifts recently (most of which are probably waiting to be picked up in four days, yes, the Cabin Fever of Island Isolation will be over. I was not voted off the island, no matter how much I tried, darn it! But before I go on, I want to thank the WishList, and the people who helped Tammy and David (Cat Shelters) with donations or comments. So if you want to click HERE, I will let you know the difference in my life some of these things have made. Little but important differences.

Sugar Princess manga (suitable for any youth nine and up), the classic fun fluff, where girl sees a double axle on TV and then on her first skating she tries and DOES one. She is scouted by scruffy guy to be doubles partner of this totally dishy high schooler (whose last partner was his sister, tragic story). Of course, he reluctantly comes around, only to have the greedy son of the ice rink owner (now hospitalized) here to turn the ice rink in the parking lot. Volume one ends with our heroine HAVING to place in the top 10 in the upcoming competition or the Rink closes! I am looking forward to volume 2, that and Vol. 2 of Hayate X Blade (ME! Looking FORWARD to things? Plus me reading, actually reading again, okay it has pictures but it is a start!). Hayate X Blade is definitely 15+ but a great series for anyone who likes lesbian slapstick, girl’s schools or sword fighting. Basically, the bell rings and if you can grab the star from the shoulder or hip of the pair you face in the three minutes before it rings again, you can move up a rank. Makes school interesting. And with this pair (the best fighter in the school and the NEWEST, but one who thinks in odd ways, like bouncing off her opponents to reach the next one!), you might pick up some tricks to use at the S.C.A. or any sword fighting event. Plus I dare you to read it without busting out laughing.

WE bought Moonlight and the Shelves ourselves (we are putting them up now, so I can have certain important cards and other gifts I can see from my bed on days I can’t get out of bed), also a shelf for putting on a small stack of manga and DVD’s to play on the computer, Manga like Agent Luna, and Invisible (avoid this one, a giant TEASE, and a sleezy boyfriend). I can’t wait for After School Nightmare, winner of the Eisner Award (like the Pulizer or Booker), about our intersex heroine, and masks, pretending and how we have to expose ourselves to find friendship and love. The Scooper Plate (both of them) is now one of the main dishes I eat from, as from a pre-cut steak dinner, to Mexican Chicken, it makes it possible with my adapted utensils to feed myself, as my other adaptive plate was too large, for someone in the EARLY stages. I use it at least once a day on average. I don’t even think about it, and how easy it has made my life, that’s a great gift. The Stickers and Postcards are part of the project and a little go out in every bundle we send, it also cuts down on my time scouting on line for stickers and allows me time to….well, do glorious and foolish things like wash the dishes. (In a twisted version of pride, I wanted you to know I am wearing the SAME style/cut/images on my panties/underwear as this anime girl while I type this - yup: cherries) I don’t know who has given each gift, but I am letting everyone know that my life is better, Linda’s life is better, Cheryl’s life is better (their burden in helping me, in caring for me, in helping me care about things) because of them. Stephen Fry in America we will be watching with dinner, we only watch it when we are all together and he seems to find the oddest things about Americans interesting (‘Look at this wonderful AMERICAN house, filled with stuffed animals!’), he also gives the democratic process and stumping as something good, getting to face your candidate. His comment on crossing the Delaware and George Washington’s historic boat ride, “Bloody cold isn’t it?”

Macha Macha the lesbian manga is WAY too embarrassing to talk about because it is like reading graphic novel to find out that someone has been filming you while you were having foreplay and sex. Let us say that there is an aspect of realism far beyond what I was expecting (hey? What? This isn't foreplay...I'm ill, see the bandages..and she was..um..nursing me) (except for that these are two HORNY girls). The battery charger helps me take the pictures from the anime books and Doujinshi I order which accompany this blog, the bed pad has helped me so that now I only remember bed (however much I might hate the Bed of Death, as it is likely where I am going to die) as someplace where I might be in pain, but the BED doesn’t hurt me, the bed cradles me. As for Ear Hugs….I mean Ear Plugs, all I can say is THANK GOD and thank you – seizures increase my ability to be sensitive to noise as do two of my medications. So try and keep a secret within two blocks of me (not likely!). Too much sound stimulation! Same thanks for the ear buds to the MP3 player which I am wearing right now, listening to “What if God was one of US” – so I don’t hear Linda and Cheryl banging pots in the kitchen. It makes me less exhausted and irritable, and somehow, that makes everyone happier?

The Books of postcards (She TRIED to be Good, …) are so good, the postcards bring immediately the image of different people. But so few postcards and so many fallen and tawdy women…..oops I mean so many people! I recommend We Were There the Manga for anyone, well anyone female and any romantic male. Winner of a famous Japanese Award for Manga, it just gets revved up when it stops and Linda, Cheryl and I (we all read and enjoyed it!), must languish until someone gifts up with volume 2 (on the current wishlist, hint, hint!). The romances have been a refuge for Linda who not only is facing her own disability and the doctor appointments for that but also they give her a mini-vacation, a few hours away from where her love is dying a really horrid death in real life. And from a couple days ago, when it got very, very horrid, we thought it was the end. I signed the draft will to show intent between losses of consciousness, breathing and heart going thready and then just fluttering. Let’s say, waking up with a mountain of stuff to try to do to TRY in case I live longer and also knowing, from daily memory and reminders, that THIS could be the last day.

And while this might be the last day but it was a good day, some hugs, some kisses, I made Linda happy, I made her surprised (how long since I could surprise her in a GOOD way?). Right now she is off using the George Foreman indoor grill, another gift which cuts cooking time to 1/5th, and she has fun, she smiles she when she talks about cooking (Linda, whatever you are taking, the dosage is TOO high!).

For Florastor, when I had the big BANG as I think of whatever happened a few days ago, all blood to my intestines seems to have stopped, right now, if I did not have Florastor, a prosthetic pro-biotic, I would have no way of absorbing nutrients (the dietician and VIHA nurse ARE coming!). If you bought this for me, you are literally keeping me conscious and functioning. That’s pretty cool.

And while you may think that a list of gifts from the wishlist and a list of chores I did is a pretty boring post; it is actually the best of days. No major stopping of breathing, no stress or grief crying (the amount of TP we go through is AMAZING), none of watching me struggle for every breath, labouring, for HOURS. Or moaning in pain, or in dementia, time lost to me, where they have to protect me and stop me from accidentally hurting myself (like trying to get up and practice fencing). Reading a good manga (romance for Linda), having dinner together, watching a bit of TV, it sounds mundane. But it is these little things that are a gift, that I do not have to struggle with my spoon or plate, that I can look at certain cards from my bed and know who has the same one. Little things. As for gloves, once the electric chair arrives I can report on those too. David has been finding better and better postcards and now it is my job to get them out there to you; to those helping with the Shitajiki fund, it IS working, I search less, I have had several Shitajiki framed and are going out. I am giving again and I like giving. It is only a few to start but I have postcards, David’s cats are fed, and I am sending out gifts, all for the price of postcards. Plus I am saving for an artbook. I am saving, me, Dead Girl Wheeling, is saving for an artbook.

Next thing you know I might be smiling. It is hard, it is a lot of little things and it is work but the plan seems to be working and I thought that everyone might like to know that. These are the things that make a day, emails from friends, exhausting myself foolishly (only not in competition except with that stuck on cheese on that dish!), and Booth Garner finally done!