I decided in confidence today to tell Cheryl, exactly WHAT fantasy with the Feeldoe I was having during my “almost” masturbation I blogged. She told me she already knew. This was a jolt but not an uncommon feeling fir a person who gets a brain wipe seizure often, so I asked if I told her yesterday. No, she said, I posted it publicly under the comments section.
What? But surely not the position and everything? Oh yeah! Yeah, note to self, do not do all your replies while high on pain meds!
Cheryl has been good to have around and I do feel that she keeps me in check as I can hardly be taking her to task for doing too much that will hurt her back as I do stupid things myself. Well that’s the theory except I apparently had a hard fall (like “Timber!!!!”), and a TIA, and some seizures followed by the BIG Grand Mal. But we still watched Anime (Luckly Star!), and some British TV (QI with Stephen Fry) and did postcards. And she said that she now “gets” disability time better. And I think she is understanding my limits better and maybe she can help me with ways to focus on my goals more and be less danger to myself (the general public will have to look out for themselves).
Anyway, the Great Lesbian Sleepover has come to an end, and yes, it looked much like this. Why are we so flushed and strategically clothes awry? Because lesbians sleepover have...um....pillow fights and Fun Factory? Actually there were pillows involved in many ways, and machines that made steam punk noises and hummed.
Tomorrow I have an appointment with a new Neurologist, who after the LAST two specialists did….nothing, is our GP’s last hope that this one will do something to treat me as he can’t/won’t. My GP does seem to have a self destructive streak as he informed the neurologist (who is a specialist on seizures), that according to his knowledge (which is limited to only accepting two seizures: Grand mal and petit mal and seems accurate for 1920’s style seizure treatment), I am having pseudo seizures. This is my view of the specialist visit. Really, when do Canadian specialist want to listen to you? Or even your symptoms? The last two didn’t.
I, Cheryl, the neurologist at the hospital, another hospital doctor and I can’t remember who else thinks I have Tonic-clonic, Partials and absance and complex temporal lobe and some front lobe seizures. All I know is that if I can wake up with: my wrist sprained so it has to be wrapped, my shoulder dislocated, muscles ripped from my SPINE, and my ribs, my leg ripped in quads and calf, and half of my neck swollen from ripped muscles: Hey, I may like a good show as much as the next person, but I think I would remember that. I remember when I pulled ONE muscle in fencing in my back. I can’t imagine putting myself in state of waking over and over with screams, and two more seizures, in the night, being unable to get out of bed and in so much pain I have to take pain pills just to transfer to my wheelchair for ATTENTION? For “deep psychological issues.” Besides the Grand Mal, I hope they do not take me off Lyrica which has decreased my seizures, it hasn’t decreased my stupidity in pushing my limits.
The count of postcards for US and Canadian posting today in a 36 hour period was: 72, from stage 1 of matching people to stamping, stickering, writing, all of it! 72, a new record, only due to the help from Linda and Cheryl and a sort of Quilting Bee Type marathon. So that’s at least 25% of the list done! Linda asked after Cheryl headed back to the US in a trembling voice, “We get next week off right?”
Oh, well, maybe the week after, I mean, got to break 100 in two weeks right?
Okay, Serious part. I am now realizing that I am losing my identity not just because I have been disabled long enough to see myself that way. But also, because of the memory problems, I can’t remember much of what happened even recently. But also, my capacity to DO what I used to do, to have the knowledge of tens of thousands of books on the tip of my tongue is diminishing. But a bit like a volcano, even when they aren’t erupting, they are still darn impressive (meaning, I am not about to sign up for “sing along time”).
The couple who came to see me were there to see Linda as one works with her. They were a fine couple, and we COULD have got on great, except they talked to me like I was 13 or 14. That while I might be doing something, or have some interests, they weren’t “adult” interests. I tried to speak to the person who just got their degree as one graduate student to another, he replied back as a person who has “been to university” to a person who has not – except he only just got his BA. So, no, he was not seeing me as the person who very likely, if things were different would have TAUGHT HIS CLASS.
She, besides flinching every time I said “lesbian” talked to me as if I did not understand basic history or geography, or that what I did was a “nice hobby.” And I guess in a way it is. I have to wonder though, is that how people talked to Mother Teresa, “Oh, that’s nice, so you do something to keep yourself busy during the day, that’s good….!” Smary smile, “Keeping busy is important!” I don’t think so. But maybe they did. People place to much expectation on what they see (like Kiki here) or on what they heard (disabled person with stroke and brain problems). Listen to me, where I am! No, I don’t hold the fate of children in my hands, but I do the Postcard Project for the same reasons. They asked Mother Teresa why she WASTED her time and energy on babies that were going to die anyway, and she said it was because they would leave this world knowing they were loved.
In an accidental encounter tonight, I met with the running council member and the president of my local community and we talked about disability issues and he wants me to give him a point sheet of the most important issues and he is going to get them addressed. He WANTS to have green and accessible housing. Linda goes, “Oh no, Elizabeth has entered politics!” Well, no, I just pointed out that having a population of over 20% seniors and then grocery stores without a single blue badge parking spot seems a bit…um…cruel. So I am about to be a warrior once more, it seems. I have been toying with the idea of going back to boxing, but until then, I guess I will delve into community politics (stop cheering Lene). I mean, he seriously said, “I don’t know the transit issues” (like buses denying or treating poorly the disabled) and continued, “I really NEED you to tell me.” Well…okay.
By the way, the sheets like this one, I have been displaying are called Bisen, they are sort of artist groups that aren’t yet professional or before they become professional anime artists who make select stationary. It isn’t that expensive, a few dollars a sheet, but very hard to find, I happened to find a woman who collected a lot and she introduced me. So I am introducing you. The Canadian Printer I took them too admitted they couldn’t match the color of the stationary master sheet, much less of the reproduction. They said that Japan is VERY good in paper and printing. Cheryl said that the paper mill in Port Angeles….is owned by the Japanese and makes paper for Japan.
In finishing, on things that make me happy, I found and had shipped this fan from Japan showing a scene from the Ghibli Film Totoro (by the way the UK copies with the very accurate and un-americanized subtitles, are currently on sale at www.amazon.co.uk for 7.95 in UK, 6.67 for export shipping, and they promise delivery or refund). This is from when the movie was originally released and the person who sold it didn’t have any more, so I have yet another item, much like my 17th or 19th century first editions, that I love, but yet can’t do much more than look at. Am I the only other one who collects things like this, where you collect it, you love it, but you can’t touch it because it might break or lose value (In Lucky Star the girl advises getting three copies of all collector items: 1 to store in a special case and put away, 1 to take out and look at occasionally and 1 as a back up in case anything happens to the one that is looked at occasionally. Both Cheryl and I were nodding our head, Linda was looking at us like we had TWO heads and were aliens).
I hope you had a better weekend than I did, and there is a fair chance that if you are a reader, a postcard might be coming to you. At least this or next week.
I finish with this picture because the end of the weekend is both the end of the day, the end of one work period but also the beginning of the war between disability time and AB time. It is when all the AB agencies and people steal my time by trying to get me to do things on their schedule, which isn’t possible, so time is wasted on both sides and then they book ANOTHER meeting. Sigh. It takes me 20+ minutes to get my wheelchair ready to go out the door. How long does it take you to walk out the door? That is the difference between disability and AB time.
Thank you for the support during my down days. And for staying for Real Life, which I wish wasn’t my life. As my strange and alienating brother once said to me after he moved into “Millionaire Row” in Atlanta: I explained that all people have problems and struggle in their own ways, and he said, “No, actually, when you have enough money, all those problems go away.” Errrr….yeah. Thanks. So while I wish I had a little better Real Life, I am glad I have the support and friends I have. And I try to be support for those who I can.
20 hours ago