A Multitude of Musings

Have been terribly sleepy over the past couple of days. Slept most of yesterday, actually only getting out of bed for lunch and when my husband came for a visit. Then went back to bed barely half an hour after he left at 7:00 PM. Slept all night and didn't get up till today at noon. I'm still tired, but drank some coffee to keep me awake.

( Trigger for eating disorders. )

This morning, my buddy (assinged to me through some kind of companionship project from the institution pastor) came around. She is a psychology student, getting her Master's degree soon, and she had a job interview last week. I had to consciously remind my Aspie brain to ask about it. Then we talked some about other things, but I don't remember much. I didn't feel like talking much really.

After that, I slept for several hours, while I shouldn't have. The nurse who would've taken me on a walk this afternon, just reminded me that she's not seen me. I also failed to do my chores. I'm becoming pretty lazy about those. I have a terrible craving for fries and snacks, so I guess I'll go off to ask the nurse to take me to the cafeteria this evening.

I saw the eye doctor again yesterday. I had lots of examinations done. First, I got an ultrasound of both eyes. The result was quite a surprise. The right eye had a retinal detachment, which I knew already, but the left eye still had the retina attached. This surprised me, as my sister told me that my parents had given up on me in 1994 because surgery to do something about my retina had failed miserably. I did have something with my sclera and some other part of my retina being thickened and I had a very small eye (they even called it microphthalmos). Other than that, the only thing wrong with my left eye was the huge cataract which I'd come in for. The doctor doing the ultrasound asked me how long I'd been having light perception only, and I said ten years. The doctor did wonder whether surgery would still be useful given that my vision has been this poor/non-existent for this long.

Anyway, then I went to the doctor who had seen me the previous time. He hadn't yet gotten the requested information from the old hospitals, and was going to go after that again. I will receive a call once he's gotten this info to discuss how to proceed from here. I was sent for some more examinations, that were meant should I get cataract surgery. I had always understood it that they wouldn't do a lens implant if you had as poor sight as I do, since my right eye had a cataract on it in 1993 and the lens was just removed with no implant. However, they want to do an implant anyway should they do surgery, and I had to have some things measured for this. This failed, and the doctor decided that, should I get surgery, they'll do this exam again under anesthesia because then my eyes don't move.

Anyway, still no clarity but I haven't lost all hope at least. I feel kind of bad that I've been letting my sight get worse and worse while my retina apparently is still in relatively good shape. I also feel anger towards my parents for giving up on my sight this early on.

This morning, I almost couldn't go to recreational therapy because the staff were too busy to take me there. When I was there eventually, I made a card using a butterfly die cut made with my very own Big Shot yesterday. It's quite a nice card, but I got a fair bit of help on it. This makes me feel a bit sad, because as a child, I was more able to make good-looking cards than I am now.

I slept a lot this afternoon, and when I woke up, I found myself amidst a fellow client's aggressive rage. The man was eventually kicked off the ward, but it wasn't until just now that anothr bed could be found for him. The staff consequently was busy all evening again, and just a few minutes ago I finally got a chance to speak to a nurse. One of the two recreational therapists has been on sick leave for a few weeks and won't be back next week either, which kind of sucks, because this means hardly any day activities. This all makes me kindof irritable. Guess I'm going back to bed soon.

Well, it seems this site is still working, contrary to LiveJournal. I haven't written in a while for some reason, and moved to Blogger/Blogspot a few weeks ago, but harldy get any comments on there. I was expecting to get more traffic, as my crafting blog, which is on there, does get quite few readers compared to its WordPress counterpart, but I guess a journaling site may be better for this sort of thing. Note that I'm not promising to update frequently.

( Updates are behind the cut. )

By the way, we gave up on having Astrid try to take control all the time, and in fact the person in control most of the time, who presented herself as Astrid, has chosen a new name: Katinka. If we go use this journal more frequently from now on, we'll sign the alters' names when we know them, and please refer to us as Astridetal if no name is signed.

Over the past few days, I've tried practically every free image host out there, but none satisfied my needs: either they delete images if not viewed, or they have a horrible uploader, or whatever. I guess I'm just going to link images from my own site from now on. This does mean I won't be able to show some cards, for which I don't have descriptions, because I have a rule that all cards going on my website must have descriptions and supply lists.

( My first card is behind the cut )

I have noticed lately how random people can be generous. In cardmaking and other craft groups, I've received wonderful swaps and RAK (random act of kindness) cards. Now someone granted me a paid account upgrade, which I badly wanted. Thing is, it's probably someone from a community I barely just joined. Whoever it was, I am hugely thankful. I've had a paid account on LJ for close to a year, but I don't do LJ other than to crosspost to, especially since it started acting up majorly a few months ago. I hardly got to use my paid account features on LJ, but a few are quite neat.

I feel sad. I don't know who I am at this point, since I am slightly dissociated. I feel sad about the fact that I went blind. I don't know why I need to feel sad about this almost ten years after I losot my color vision, which is the thing I most appreciated. I know it is unlikely I will ever be able to truly process this. It's supposed to happen soon I guess, since the psychologist at the blindness rheab center was getting inpatient with me for not having adjusted when I had been there a few weeks. I'd always been severely visually impaired, after all.

Problem is, the loss of appreciation can't be compensated. I am learning new ways to do the things I cannot do anymore, such as making crafts, but my color vision will never return. I had a dream last night in which I was partialy sighted again, but I know this won't happen.

I sometimes feel angry at the fact that my parents decided I was blind when I was eight-years-old. I know I wasn't. Maybe my sight could've been saved longer if they hadn't stopped taking me to doctors, and hdn't taught me to neglect the remaining vision I had. On the other hand, if I hadn't been taaught to use all my vision before this age, I might not have grieved the loss of it. Ah, what's the point?

I've been wanting to write a lot lately, but couldn't find the motivation to do so. Besides, I actually hoped my journal would have any sort of quality beyond it being the chronicling or my not-quite-daily life events. This does not seem to happen, so I'm just continuing to write what happened lately.

On Wedensday, I had a fainting spell. That's exactly what my doctor told me it was when I saw her yesterday. I was quite worried and so seemingly was my husband, who was with me when it happened. No need to worry though, as these episodes pass on their own. My doctor did get some blood drawn to check my hemoglobin, but this was just for my peace of mind.

Lately, pretty much everyone on my ward has been out of it. A woman on another ward, whom most people here knew, including me, passed away from cancer on Wednesday night. This may've set things in motion, although it's been quite chaotic for a few weeks already. This kind of sucks, as I really feel myself slipping away. Maybe it's time for me to gently allow my feelings and the parts of me I pushed away some room.

Last week, Clarissa was discussing our diagnosis with our therapist. It came down to our therapist questioning our autism diagnosis, which has been made on three diffrent occasions. Her reasoning was that we're a preemie and had a brain bleed, and therefore a more accurate diagnosis may be be brain injury. Besides, according ot her, we don't have the typical theory of mind deficits of autism. Well, WTF?

First of all, our therapist probably doesn't have a clue what theory of mind actually is, and that it is largely a theory based on one man's (Simon Baron-Cohen) stereotypical view of Asperger's. Besides, we actually do have issues with theory of mind, but compensate quite well by our high IQ. She gave as an example fo our supposedly oh so good theory of mind our apologizing for perceived mistakes very often. Well, there comes the autistics-are-assholes prejudice again. Autism isn't the same as psychopahty, no matter what Hans Asperger thought in the 1940s when he first described it.

Secondly, brain injury isn't diagnosed if it's acquired at or shortly after birth, as in my case. You may or may not agree to this logic (I don't), but it's the way it is here in the Netherlands (and in most countries). It leaves a lot of preemies without a diagnosis, and this is wrong, but going along with this only worsens it. Clarissa educated our therapist about "preemie syndrome", a term coined on a preemie parents' E-mail group, but we know this isn't an official label.

Thirdly, and related to our second point, we don't care what our diagnosis is except that we need supports, and they require a label. Autism is the closest to an accurate diagnosis we can get, as the psychologist makign our second autism diagnosis said. Our therapist often sees Clarissa and considers us very "high-functioning" (can't stand that word!), but many others in our system are not that capable. That's DID, you might say, but we disagree: even one of our young adults functions hardly at all, so it's not that some of us are children and therefore not as able s Clarissa is.

Actually, we want to stop caring, but we've fought for twenty years to get support and now that we got it, we don't want ot lose it over the semantics or stereotypicalities of a label.