Astrid’s Journal

Oh man, I don’t like 2005 one bit!! Can’t we skip it? So that it’s going to be 2006. There’s so much insecurity and uncertainty coming up this year. Graduation, what to do next year, how to deal with all those damned issues… I hate 2005… I’m so damn nervous and anxious… Please, let it remain 2004 or let it becme 2006… Then, at least, I’d know how my damned future planning stuff turned out and if I’m really hanging round someplace, being cared for like a helpless creature, doing a great study of English, improving my skills in whatever way, or what… I want 2005 to be over before it’s begun! Goodbye, 2004. Happy new year!

Astrid

I entered 2004 with recent vision loss for which I had no explanation, a revived system of “ladies” and a suspection of Asperger’s Syndrome that had become virtually an obsession. December, 2003 had been difficult, and that didn’t change upon the turn of the year. Like almost every January, this year’s first month was grey and I felt bad - winter blues? At school, the third term started. All I remember about my schedule was that I had three hours of history on Thursday, and I had an insufficient grade average, so I had to work hard, which I didn’t quite like. In January, the issue of my assertiveness (or lack thereof) was a “hot topic”, and I tried several times, without success, to explain why I didn’t reach out to stand up for myself. In this month, I was pretty active in the Autism/Aspie community, and I became more an established part of it than I’d been before. This, however, changed over the months of February and March. February was relatively quiet, partly cause I had a lot of school work, but also cause just not much was happening. In early March, however, several things happened which got my mind into total unquietness. First, the cataract was discovered on March 4, which gave me an explanation for my vision loss, which for some reason intensified my feelings about it. I wrote a note to the
ROP-support list, first trying to remain laconic and indifferent, but the issue clearly touched me. I still have mixed feelings about having to admit this - after all, I should accept blindness. As my eyes started to hurt terribly a few weeks later, my Mum got worried that I might have Glaucoma, which she’d recently learnt about when I’d informed her about complications of ROP. I didn’t worry too much, cause, as I reasoned, it’d be too accidental if two of the most common complications of my eye condition got discovered within weeks from each other. As I visited the eye doctor, Glaucoma was ruled out, although the ophthalmologist didn’t know what caused the pain. I experienced it several other times this year.

Then, on March 9, an issue with French started to emerge over my not having corrected my work, cause I couldn’t read the correction papers and my parents had not been able to scan them and had refused to read them to me. At about the same time, my problem with the “ladies” became so serious - they also had their opinions on the issue with French -, that I decided I had to write about it. Some people suggested psychiatric disorders to me, but I knew I didn’t have them and even if I did, didn’t need the labels. On April 11, I ended my search for psychiatric labels altogether, when I decided I’d quit my obsession over Asperger’s Syndrome: I knew for myself that the grounds behind my suspection had been sincere - it was *not* mere hypochondria -, but I clearly didn’t have AS, and even if I did, I wouldn’t need the label. My folks still look back at the 22 months that I suspected AS with ridicule, but I don’t want to dismiss the issue as mere malingering.

In March, I went to visit two universities, and I got to realize how nearby “2005″, ie. my graduation from high school and my entrance into “the big world”, was coming. I persistently used the word “2005″, to make it seem like it would still be a long time. Unfortunately, tomorrow I won’t even be able to say “next year”. I was scared, cause I knew I wouldn’t be ready for university by September, 2005.

The issue with French continued, but on March 23, quite a bit changed to a normal issue of me and assertiveness or the lack thereof, besides it having had an unusual history. So it became April, when the most important event was of course Rome. It was fun culturally and the Capitoline Museums are still sooo cooooooooool, but I also felt a bit strange, cause I had been so awfully dependent on folks all the time. Blindness wasn’t such a big deal, was it? It was a regular topic for the “ladies” to fight over. Meanwhile, I’d created a fourth one, Milou, but hadn’t decided to writie about her yet. I decided to send them all to the end of the Universe (enjoy your meal at the restaurant and greet Ford Prefect, Amro Bank or whatever you call him for me!) on May 12, when I planned to talk to Mrs. Van O. about the issue with French. I didn’t want to be bothered by fighting “ladies” in desperately searchinf for a first phrase. Unfortunately, my Inspiration was on holiday to the end of the Universe also. Still, I got the issue settled and, a while later, decided that French1 could still be cool.

In the last week of May, I read all too much from Future Reflections, and felt quite bad over all it had to say. I had realized already a long time before that I was terribly behind in daily living skills, but the NFB philosophy made me feel confused. Blindness nothing more than a physical nuisance? I knew I made more of it than it needed to be, but that… And that stuff with “keeping the bar of expectations high”? It made me feel really weird, cause at times I already found that the expectatiosn currently held for me were overwhelming. This confusion continued in June, when I decided to write to the BlindKid list about the issue. The replies I got were truly caring and informative.

June was a busy month with lots of homework, including a philosophy project and my profile research on British Idealism. We also got to go to philosophy weekend, which I enjoyed quite a bit. Then, we had our last finals week, and I got good marks, enabling me to move up to twelfth grade. But first, a long summer holiday lay ahead. I started it with new eye trouble and a discussion on the ROP-support list on complications of my eye condition. The combination was ideal for a few weeks of bad feelings about my vision loss. Sarah sent me a great book, Self-Esteem and Adjusting with Blindness by Dean W. Tuttle. I also got new sunglasses, which worked great, especially when I got to go to the summer rehab programme at the centre for the blind. That was quite an experience in many ways.

The “ladies” got back from their holiday in July, and I felt the need t explain a bit more accurately the situation than I’d done before. I realized that at times, having “ladies” has its advantages, cause I can deal with contradictory viewpoints in my mind and qualities that don’t quite match better. I realized that I had attributed qualities that were contradictory to different “ladies”, or to myself vs. one of the “ladies”, which helped me handle the contradictions within my mind.

In August and September, I had a very unquiet mind. I had difficulty with my vision loss again, the “ladies” fought actively, I realized how behind I really was in daily living skills and how my behaviour was truly distorted, and I basically could hardly hold on. In late August or early September, I created a new “lady”, Clarissa, to advocate for my needs and seek appropriate resources/support without overdoing. Carol had become very whiney and angry - she couldn’t hold on, I said later. What would be normal language for that? That I actually couldn’t keep up but part of me still wanted to go on, or vice versa? I don’t know.

In September and October, had a lot of issues regarding my blindness going on, and I wrote many reflections on topics relating to disability. There were a lot of things I just needed to sort out, cause I was feeling quite uneasy.

This made a smooth transitiont o Novmber’s and December’s main issues - my future (ie. “2005″, “next year”, “September”, “this autumn”), and, consequently, a lot of feelings about my current state in all respects and all that had contributed to it. My first remarks about this were angry rants towards my parents in my journal and, directly to my parents, accusatory remarks. IN part, I think, this is pretty normal adolescent defiance, but it is complicated by all sorts of things that occurred and besides, I’m by no means a normal person my age.

And here I am on December 31, 2004, going to go into 2005, but I don’t look up to it one bit.

Astrid

How do I deal with my feelings of anger and resentment? I cannot remain resentful. It would, besides that it doesn’t get me anywhere, be unfair to my parents and other folks. My parents never intended to hurt me in any way. They dearly wanted the best for me, and they saw me as normal and advocated to have me recognized as such. That is, fortunately, not the same as seeing me as sighted: my folks did accept my blindness and alternative techniques. They simply saw me as no less than a normal child my age, and protested when folks tried to see me as abnormal. Over-protection is not among my memories, at least not up till a certain time, when I was around twelve. And even then, it wasn’t quite over-protection. Indeed, they probably fund it was easier to do things for me than to have me do them, and partly, maybe, it was some sort of responsibility thing. My sister doesn’t get many chores, either, even though it isn’t a burden to my folks if she does stuff; it’s just her responsibility to do these things.

The folks wanted a proper education for me, and, realistically, there are only two options for a blind child: the school for the blind or a normal school. My folks initially enrolled me in preschool and Kindergarten in the public school system. But for some not-so-apparent reason, I had to leave normal school in May, 1992 and I got to go to the school for the visually impaired. From then on, and most notabl when I was at Bartiméus and Convergo/Sensis (the school I attended seventh grade at), my parents fought to have my intellectual/academic abilities recognized and have me go to normal school. This, for some reason that I still don’t quite understand, involved denying all my difficulties - the social/emotiona/behaviour stuff that the remedial educationalist in 1998 had highlighted as well as the independent living issues the school folk highlighted. Mum and Dad keep saying they had to choose. I don’t believe it is black or white. Aren’t there any other intelligent folks with difficulties in other areas? They’re sighted, probably. Does that really mean that if you’re blind, to have your academic abilities recognized, all issues should be gone or denied? And even if it does, why do my folks stil do so? It’s my responsibility… yeah, sure! It’s my responsibility to see how I can reach for those stars, wherever they may be. And it has always been… My folks are running a “business”, ie. stuff just needs to be done and they have no time to show me how to do things. And, of course, I, being a seven-year-old child entering the world of the blind with new “alternative techniques” and recent sight oss due to cataract (I did, in 1993), choose to be abnormal and should just see how to get over it in all respects, now being eighteen. I of course partly agree that my resistance to alternative techniques does still affect me - I’m not the greatest cane user or braille reade rin the world (although I can get by in both), but that doesn’t explain why I’m hopelessly behind in all sort of dialy living stuff. And as for its supposed connection to my behaviour stuff: problems with my blindness may have contributed (I don’t think their role is too big now, but may still be existent), but it’s certainly not all and even if it were, that’s no logic to explain why my folks keep blaming me for the current situation in a tone of voice as if to say: “You asked for it, with your resistance of Braille and cane travel eleven years ago.” I don’t believe the alternative technique issue had the impact my Mum claims it to have had, but even if it did: what logic is there to blame a seven-year-old for the “choices” she made, in which the folks, by the way, didn’t intervene as far as I’m concerned?

But I cannot remain angry about what the folks once did, that they intended to help me become normal. They never willingly hrt me in any way - all they did, with all their choices and behaviours, is what they thought to give me the opportunities to grow independently and responsibly. It doesn’t make sense to be resentful about what people did years ago, and it is even more senseless cause at the time they thought they were making the best decisions possible, taking into account the circumstances I and they were in. And anger about whatever behaviour or attitude of my folks’ is unfair. They have had to fight for me for years and they have been worried that I wouldn’t rub along from the moment I came into this world on. It’s inconsiderate to be resentful with them for what has gone on with them and me. But I don’t know how to deal with this. I should understand that knowledge about how to raise a “special needs child” (I hate the word) doesn’t come instantly when you have one. I must understand that the folks dearly wanted me to grow up to be a normal person, and that they valued my academic/intellectual abilities (they still do). I know that my folks didn’t set out for the less acceptable - they have been open about their hopes and expectations for me from the time I was a young child on. They certainly generalized their ideas, but they are grounded and I must accept their outcome. I must learn to live with my choices and the choices made for me, as Dad worded it a couple of weeks ago. I’m eighteen; it’s my responsibility to make decisions now. But how do deal with my situation??? With my feelings of anger and resentment over my parents’ attitudes and behaviours, with my own lack of skills in all sorts of areas, with my own contradictory feelings about what I’m about to do, with my feelings of loneliness and being left out, basically with the total mess inside my mind? I feel totally screwed-up, but I have to deal with it. If only I knew how.

Astrid

She feels angry, hurt
By people
Who didn’t intend to hurt her

They wanted the best
For her
To become a good grown-up

They wanted her to reach
For the stars
Or however the saying goes

They made decisions
About her
And what they wanted her to do

She didn’t reach
The goals
Whcih they had set for her

Now she feels let down
But it
Is her responsibility

The age of eight has always had an incomprehensible significance to me. When I was eleven, I had an eight-year-old girl in my mind to represent my behaviour difficulties. She was a lot less “formed” than Milou is now, but the concept was similar. When I was thirteen, I wrote a - largely incorrect - lookback on 1994. In my memory, 1994/1995 was a pretty eventful period. That is not to say that it was a bad year in all respects. The roller-skating club we’d formed in our neighbourhood was at its top in the summer of 1994. I wasn’t good at roller-skating, but I could participate on an equal footing with the other kids. Remembering this often makes me sad, for I sometimes wish I could still roller-blade or roller-skate. A while back, I heard an announcement of a tandem skating event, where you get to skate with a sighted guide. But for some reason I’d rather not skate at all than to have a sighted person guide me. After all, I could once roller-skate and roller-blade independently. And all that I had then that I don’t have now, is a tiny bit of vision, that I don’t want to make such a significant difference.

In that same summer, I went to summer camp at the living facility for visually impaired children in my city. I don’t remember if it was this year or the year thereafter, but once I had to be in the younger group, where I was the oldest kid, cause there were two sisters who wanted to be in the same group - the older, who was one year older than me, was Floor (yes, that’s a normal girl’s name here), and the younger, one year younger than me, was Milou. She looks a lot like the Milou I’ve in my mind at this moment, although I had very little contact with the actual girl. The camps were always pretty fun, but unfortunately I couldn’t attend in 1996 anymore, for the camp dates didn’t match my summer holiday.

We also got to go to Vlieland in 1994. It would be the last in four years, and, as I returned in 1998, Vlieland became the symbol of my deterioration in all sorts of respects. I have a memory of 1994 that I wanted to go to the village of East Vlieland to buy sweets and so went on my own. At eight! I of course never reached the village
- I likely got lost and my Mum was worried, of course -, but only the idea that I dared to do that at eight! A year later, I didn’t even dare to go to the playground across the street from my home anymore. Vlieland that year was truly fun. We had a club of a few girls and one boy, doing just normal kid adventure stuff. My peers had to help me at times, of course, but I don’t remember having the feeling of inequality that I later so often had. That is not to say that 1994 was the only year when Vlieland was fun - I can remember it was in all previous years. In 1993, I had a shells and feathers exposition that draw much attention on the camping, and in 1992 I got to watch eider ducks with Dad and spent the entire evening with a paintress. 1998 wasn’t cool one bit, and neither was 1999. Afterward, we didn’t go any more cause Vlieland is so small that it’s getting boring easily.

I entered third grade in August or September. I think that I did most things in Braille from the beginninf of that year on. We had a fairly big class - nine or ten students I think. I don’t remember much about the curriculum, besides the multiplication tables each Friday afternoon. We had a “table club” with a few girls, where we’d help each other learn the multiplication tables - which mostly meant that I was helping the others, cause no-one of course knew the nineteen-times table:

• 1 * 19 = 19
• 2 * 19 = 38
• 3 * 19 = 57
• 4 * 19 = 76
• 5 * 19 = 95
• 6 * 19 = 114
• 7 * 19 = 133
• 8 * 19 = 152
• 9 * 19 = 171
• 10 * 19 = 190

I won’t forget it easily. There was only one table I had to do twice - the twenty-two-times table, cause I’d whispered an answer to someone else, lol.

In October, 1994, I was about to have eye surgery. The folks had been all too optimistic and hopeful, saying that I might have such a dramatic improvement in sight that I might need to adjust entirely over again. My sight did improve, but not as dramatically as the folks had hoped. In 1995, my folks decided it’d be the last time I’d get a routine eye exam.

In early 1995, there was a flood in the southern part of the country. I don’t know why it was so important, but it was. I made lots of drawings of flooded areas near Itteren and Borgharen in the province of Limburg. Apparently, it made a significant news feature.

In early 1995, it became definitive that we would have to move to Apeldoorn, cause my Mum’s emplyer was going to reorganize. I don’t remember how I felt about it at the time, but I was excited at the sight of the house we were probably going to buy - the same house I currently live in. It had a garden much larger than the previous on in Rotterdam, the house seemed larger, and it was in a lovely neighbourhood with lots of playgrounds and in a residential area. I was also excited at the foresight of going to a new school - cause my previous one had been so low level academically, and, as the school officials had told my parents, fourth grade would be truly fourth grade. My parents till this day don’t believe it, but then they don’t realize that in a typical elementary school, also kids of all sorts of academic levels learn together.

On May 18, 1995, my Grandpa got to be ill. My Mum siad he’d had a brain bleed, and, while I had no idea what that was, I cried cause folks had told me that I had had one when I was little (in the NICU?). “That’s different,” Dad or Mum said. It was: all I needed at the time, was a shunt to drain the fluid away, while Grandpa was in a coma and almost certainly going to die. I told my class the next day, and a boy named Ibrahim said promptly that he wasn’t going to die. “He is,” I protested. And he was. On May 23, 1995, Grandpa was dead. His cremation was on Monday, May 29, at noon. It touched me much more than my other Grandpa’s death and cremation in April, 2003, but I don’t know why. Mum went onto the stage and read a poem to her Dad. As she had finished, she came to me, her “big daughter”, for comfort. It still makes a big impression on me.

I don’t know why I’m remembering all this now. It’s been going through my mind for a while. Maybe I’m just a bit sentimental, huh?

Astrid

Okay, it’s Christmas. We don’t do much for Christmas. We used to have a Christmas tree, but we don’t anymore, since our cat might climb in it. We did have a sort of Christmas meal, but it was just the normal argument over whether the lights should be on or out, where the candles should stand, in what order we should eat what, etc. Further, today was pretty boring, not least cause I slept till 4:30 PM. I’m not that much of a Chrstmast freak. If it had any meaning, I would, but it is not so much the religious stuff and Mum’s remarks that it is the holiday for the light (ie. days are getting longer) is driving me nuts. Christmas doesn’t make much sense to me, besides that I like Christmas carols. I’m always sad that they aren’t on the radio the rest of the year, lol. The folks in our neighbourhood by the way have truly stupid decorations. I used to like decorations for the sole reason that I liked picking them up and playing with them, but I cannot do that now.

Astrid

When I was in seventh and eighth and sometimes in ninth grade, I used to make drawings of little people in cages. They symbolized two things for me: firstly, they were a symbol of my loneliness and isolation and lack of contact with classmates and other “casual” acquaintances. I had a memory yesterday of one time when we’d just moved to Apeldoorn (my current hometown) a few months earlier. Sigrid had gotten to know a girl, who lived a few blocks away (she still does). Sigrid brought the girl into the backyard, and told Mum and Dad that she was going to play with her. We stood near the gate, Sigrid and the girl about to leave. I did the usual introductorty stuff: asking her what was her name and how old she was. She was named Marleen and she was 6-years-old. Then, I asked Sigrid if I could join them. She looked at Marleen, asked: “She can’t, can she?” and Marleen shook her head. Later, I got to know Marleen’s sister Selma, with whom I became acquaintqances, but never had the contact I’d hoped to have. The same happened with Sigrid’s friend Sara and her sister Anna - I hung around with Anna when I was to Sara with Sigrid. I also used to go on my own at times, but often got lost - Anna’s house is a 10-minute walk away - and gave up. Another thing just comes to my mind: I was not allowed to walk the 1996 four day walking event. On the last day, however, I walked the trip. Sigrid, Sara and Anna had all walked the entire event, and got their medals and lots of sweets. In the car back home, I was frustrated. The others gave me some of their sweets, but I stayed grouchy. Mum got angry cause I was acting egoistically (who says all I was upset about was the sweets?). When we dropped off Anna
and Sara, Anna cried, supposedly cause I’d hurt her with my behaviour. I don’t know how much this event relates to our never quite developing frindship, but it was very early in my getting to know Anna, so I’m sure she formed an opinion on me based on this incident.

I never have had many friends, and this pattern didn’t change when I went to seventh grade at my current high school in 1999. I think this is partly related to my difficulty making contact with folks cause of my blindness, and partly due to my deficient social skills, but I don’t know in what proportion each contributes and how my blindness and deficient social skills are interrelated. When the person who reaches out from the school for the blind to normal schools, visited my class in February, 2000, each of these issues were also reflected upon: there were those things that could be linked directly to my blindness, such as the classmates’ idea that teachers gave me favourable treatment and the comment that it took me so long to pack my stuff, so that the classmate who had to guide me that day (we had a damn schedule for that) had to wait, but the folks also commented on my curt behaviour.

Following these talks (we had one other in seventh and two in eighth grade), I of course always wanted to follow up people’s critique, but I never knew how to do this appropriately. I tried to be submissive to other people, but did so in a very inappropriate way - on not saying what I felt, thought or even preferred when given a choice. That’s not trying to be nice on letting others decide what they want (a lot, in my mind, had to do with how much I bothered others and I wanted them to decide howmuch they wanted to be bothered by me), and I think that in some situations it can even be curt itself. This feeling also made me feel an “enclosed” person, cause I felt I couldn’t express myself. I felt locked up in some place. Others could get me out or come in, but I did not have the ability or permission to reach out on my own. In seventh grade, I blamed this feeling on some classmates, who had made me feel that way - notably the boys who teased me had made me feel like this.

Later, in 2001, when I became aware of the “ladies”, I blamed myself - that is, I blamed Jane. I considered her to be a moralist, who represented an outside voice that I should just hold on and was egoistic on letting hear my own opinions (I am quite egoistic, I know). I wrote an entry on this in my Dutch, offline journal in 2001, but can’t find it anymore. I had made that theory about my behaviour that said I acted out so often cause I was frustrated due to issues with my being different. Even though I have not many memories of that before the age of thirteen, I know that it existed even in Kindergarten. I just remember an occasion when we were standing at some place. It looks like a bus stop, but we never travelled by bus. Maybe it was the subway station, although I think that lookeed different. Anyway, I, Sigrid, and Mum were standing someplace and suddenly a boy came along and stuck up his hand to me, asking how many fingers he was holding up to me and calling me cross-eyes. That happened more than once, but maybe this time something special happened - maybe Sigrid got angry or something, I can’t remember. I was well aware of my difference when I was in
Kindergarten, although I did not fully understand it. Dean Tuttle writes in his book, Self-Esteem and Adjusting with Blindness:

Congenitally blind children experience a trauma of a different sort. For them, the realization that others can see, while they cannot, grows gradually through repeated encounters with discrepancies. Burlingham (1979) in her work with blind preschool children suggested “as far as we could observe during the nursery school years, the blind child’s discovery that other people possess a faculty which he lacks does not come suddenly. It begins as a puzzle which is solved very gradually in “stages”.

That likely happened to me, too. According to Mum, in her theory of my behaviour disorder and its cause, my having to learn Braille, apparently, was an exception to that, but I cannot remember anything about that Braille stuff other than one pre-Braille lesson and one lesson with the Perkins Brailler, and I don’t remember feeling bad at that time, so I don’t place too much value on Mum’s theory altogether - besides, I can remember neither a moment when I was normal behaviourally, nor a sudden or gradual change with me around that time other than some statements I remember making about how often I was sent to my room for acting out. So I assume my realizing I was blind was very gradual. Dad says that when I was eight, I asked how people could see things, as if I thought I could learn to be sighted. I was about ten when my denying I was blind first became an issue, but it didn’t become so too much till 1998. Then, in 1999, I realized that it didn’t matter whether I saw a tiny bit or totally nothing. In “What I Realised“, I portray it as a sudden realization, happening simultaneiously with my realization of the actual meaning of this - inequality. In the article, I imply that this was a very sudden moment, somewhere in the first four or five weeks of the school year. I must’ve meant September 24, 1999, but the weird thing is, that I have no idea what so important happened that day, and the vague ideas I do have are in contradiction with what I know is true - remembering places being lain-out in a way they can’t have been. All I wrote about in my Dutch journal on that day was about realizing that people didn’t like to guide me, on my “friendship” (or lack thereof) with a girl named Sietske, and on my childish behaviour. In a fictional story I wrote in December, Sietske (who had asked me if we were friends the day before) said that “we” (who?) were never talking to me, but I don’t know if that truly happened, and I would not think that such a remark could cause me to make the day my most famous day in school so far.

Anyway, my being different was in a way connected to all these feelings of being unable or not allowed to reach out on my own. All arguments Jane used in the 2001/2002 school year, were relating to my blindness and the effect it had on others. A strange thing was, that she used comments made by others - my parents, Sigrid, teachers - as arguments for her idea that I should be submissive, self-reliant, elimininating my own ideas in general. I, however, didn’t blame anyone for the resulting feelings of confinement. If I blamed anyone, it was Jane - cause at the time I had considerable difficulty realizing that the “ladies” were not separate beings who just knew me well, but represented my own feelings and thoughts.

A few weeks ago, I thought about Jane’s positive qualities. I have for a while realized that she is not merely the name I use for my ideas that I shouldn’t be considering my own needs. She’s also getting me to study when I don’t feel like doing so one bit. She is also rigidly following the rules. This got me to think already a couple of months ago that I could also call her a moralist. But she’s also the one that just wants to hold on in the next year stuff. She wants to be proud of herself, I wrote on Sunday. She’s a fighter, I thought a few days ago. She wants to beat the odds. I’ve always been known for that. I’ve invariably linked the having to hold on issue to a feeling of needing to be submissive. I have linked it to fighting without making clear my needs to others. I use all the resources others provide me - at times even if I don’t need them -, but I will rarely ask for resources or even take initiative to find a solution for a problem others have in accommodating for me. Others can take the initiative in determining my needs and serving them (or deciding not to, for that matter), but I cannot communicate such things on my own. Nor can I reach out to others on my own initiative. I rarely take the initiative to help others, and when I do, my help is usually more a burden than assistance. I fight, persevere, for myself and largely on my own. And I keep up and hold on and make sure that I can make it with effort.

This fighting and perseverance is something continual, while my feelings of being locked up in that place where only others have the ability to get me out or reach in, only happens occasionally, when I’m trying to reach out to someone else or expressing my feelings. The feeling is very “real”, almost as if I’m literally locked up in that cage. I used to blame Jane for making me have this feeling, but on Wednesday I thought that maybe I’ve made her to represent that feeling, cause she’s such a go-getter and wants to show that she thrives, and I’ve always associated that with being independent and self-reliant.

Astrid

I have been thinking about being the eldest child lately, and especially being an older sister. Friday had little to do with it. But in general, I’ve often felt more like Sigrid’s younger sister than her older one. I was pretty young already when Mum first told me that I should use her as a model for my behaviour. My parents would then tell me that even Sigrid (ie. a younger person) behaved better than I did. These events have pretty much disappeared a few years ago, for it’s no wonder that a 16-year-old behaves better than I do. I’m happy in this respect that I don’t have a 10-year-old sister. Sigrid has further always been better in socialization and just plain behaviour in general. I was pretty young - around eight - when I first got to notice that and got really frustrated with it. Sigrid had a friend her age, who had a younger sister. We (my Dad and I) often went to bring my sister to her friend. I think it must’ve happened more than once, but one particular instance is when I for some reason got to stay at the friend’s house for a while, and asked Sigrid and the friend if I could join them. I couldn’t, of course, and thus got pretty frustrated. I had very few neighbourhood friends - and for so far I had friends in my neighbourhood, they were more like casual playmates than the friendship Sigrid had with the other girl. I was always pretty lonely, which by the way only got worse when we moved to our current house in January, 1996.

Over the last few years, however, the issue of independent living skills has become increasingly important. When we were young, I remember Sigrid and I sharing at least an equal role in household tasks. Now we do so where it comes to chores, also - cause dishwashing is the only true chore
here -, but the difference in abilities is very clear when my parents go out. I felt really bad when my parents were on a holiday to Terschelling in September, cause Sigrid did most of the housekeeping and it was almost an act of grace if she let me do something. I have come to increasingly dislike the evenings when my parents go out, cause Sigrid will do most household tasks and hence will seem a lot like my carer, which I don’t want her to be.

Besides academics, Sigrid basically has always been better in everything. She knew more of those life topics as for those going beyond academics. Meanwhile, I’ve done a lot of “catching up”, but when I still had difficulty accessing information (neither Internet nor a scanner), it at times led to embarrassing situations.

In academics, I have almost always been my sister’s major. One of my most precious memories in relation to this, is when I learnt to read. I learnt to read print when I was four or five. Then, my parents put a sign in the cupboard at the sweet shelf (from which we of course always stole sweets), saying: “BOEVEN!”, which is Dutch for “RASCALS!”. When Sigrid learnt to read, she requested that my parents put the sign in the cupboard again. It’s to me always been a symbol of my parents’ pride that I’d learnt to read, even though reading from 1993 on became my biggest academic struggle, for I simply resisted Braille. Later, Sigrid and I learnt from each other. The earliest memory I have of that, is asking Sigrid if she could teach me to use street plans when she got to learn about them in third grade, cause I’ve never done real third grade world studies. In high school, and especially now that Sigrid’s in tenth grade (we have to select courses from tenth grade on), this has become more usual. One of my interests is biology, a course that I’d loved to have followed but was a problem due to the graphics. Sigrid follows the class and I love to learn about what she’s doing (but she’s only had her first lesson today, lol). Philosophy is one of the courses I follow, and Sigrid seems to be interested, so I get to sort of help her with that.

Why am I remembering all this? And why do I feel like writing it down? None of this is particularly exceptional - a lot is normal older sister stuff, and the rest is normal for an outsider -, so what’s so special about this that it’s been going through my mind for a while? I don’t know, but yeah, who says I only write abnormal stuff?

Astrid

Last Friday, I had a fight of some sort with Sigrid. That is, at first we had a “normal” argument. It was about the new harddrive for my computer that would’ve arrived on Thursday, had it not been that I didn’t hear the doorbell ringing when the folks came to bring it. “You’re just deaf. I always hear the doorbell,” Sigrid said. I got a bit angry, cause Sigrid’s voice sounded very accusing - like I behaved very, irreversably faultly on not having heard the doorbell. I said so, but Sigrid went on in a tone of voice as if all she does is right or “just the way she is” and all I do is a manifestation of my elective behaviour disorder. At the same time, we were making toast. Sigrid actually made toast for me, not cause I asked her to, but cause she felt obligated cause I often burn my hands when making toast and then say “Ouch,” which she thinks is overreactive. Well, I may overreact - not when I’m just burning my hand (I personally don’t think saying “Ouch,” is overreactive), but when stuff goes wrong I get frustrated quite a bit -, but she could also just go upstairs or to another room or just plain ignore me. Well okay, you get it already: it got to be a fight over my behaviour stuff. And one thing that I truly hate in situations like this, is how Sigrid treats me at these points. As I said already, Sigrid often doesn’t express her negative feelings at the moment and does so at once when the situation escalates. So she did on Friday. I’ve always hated these sorts of “discussions” with Sigrid, for they always take the same form: Sigrid complains about what I “always” do wrong, I respond, sometimes defensively and sometimes asking her for a clarification on how I should behave then, then Sigrid responds, depending on my reaction: when I get defensive, she says so and gets on with a litanny on possible rationalizations of this behaviour (usually incorrect ones, but how can she know?), and when I ask her to clarify herself, she either does so briefly, or gets to a “how would you feel if…?” statement. I don’t consider it a clarification, for it explains nothing about what then she would desire: obviously, if she criticizes me for my behaviour, she implies that I would feel bad if someone acted the same way to me. That doesn’t make a “How would you feel if…” statement an explanation. Her brief clarifications often take one of two forms: either she explains why the behaviour is so annoying, or she makes some very general rule about the desired behaviour and then ends the discussion. Last Friday, for instance, I asked her how I’d know if she wanted or didn’t want me to join her during school breaks. “If you hear me talking to someone whose voice you don’t recognize, don’t join me,” she explained, cause she meant that I could join her when she was with her boyfriend, but not when she’s with her classmates. Well, so, does that mean that when I hear her voice, I’ll have to stand near her to listen if the other person responds to her or if I can hear a name, and then jusst leave when it appears to be an unfamiliar person whom Sigrid is conversing with. I hope it won’t take me too long to figure out whom she’s talking with, cause then I’d be standing there, saying nothing, for a while, which as far as I’m concerned comes across very curtly. When I tried to express my feeling unsure about her explanation, she told me to go to classroom 24 each break, cause she’ll be there when she’s hanging round with her boyfriend, and I shouldn’t join her anywhere else. Well, she can’t tell me where to spend my breaks, but if she doesn’t want me to join her anywehre else, that’s fine with me. She’s not going to command me - which she tried - not to hang around near the lift, cause she’s hanging round with her classmates there. Well, she equally often isn’t, and I hang around near the stairs that are there equally often as she does (and usually not with her). I, usually, have not much of a chance to be critical of her, cause most of her behaviours are “just the way she is”. She may be right that my behaviour is usually more disruptive than hers - although that does not mean that I elect to be disruptive and she doesn’t (which she thinks however) -, but that doesn’t mean that all her standards are normal and all mine are distorted. The discussions are most oftenly ended by Sigrid, very derogatorily (to me, but I’m overreactive, of course): “So, now I’ve said everything I wanted to and you have been able to respond and now it’s over.” It sounds a lot as if she’s the mother and I’m the defiant child, whose Mum is trying some new parenting style in giving the child the opportunity to respond to her corrections. I know that I am my sister’s minor in this respect, but this sort of approach makes me feel very bad.

Astrid

So, I’m going to quit my tryign to sound “normal” and going to tell the “ladies”‘ points of view on next year, cause that’s how it’s going on in my mind.

Clarissa: She was initially the one who planned for the college prep programme at the rehab centre. She never had the illusion that “we” would resolve all “our” difficulties by doing so. She realizes that mainly Carol has a very unquiet mind in addition to all the already existent difficulties with blindness (the lack of independent living skills, the problems coping with blindness, etc.). However, she hoped that, when “we” got some training, stuff would go at least somewhat better, cause a lot of the problems are, even though they’re not blindness problems themselves, “triggered” by blind-related situations. On November 15, after I’d confirmed De B.’s comment about my going to university next year, I commanded her to enhance the transition to college. She is a college student, so I thought it should work. She has had some ideas, but none that the “ladies” (and I, for that matter) can agree on.

Carol: She’s been very frustrated and angry for a few months already. She has very complex issues. She is unable to arrange anything whatsoever and is only very emotionally hurting. She used to be able (after she’d broken in August) to help Clarissa with simple tasks, but she cannot cope with these responsibilities anymore. She has a lot going on inside and she wants to get over these issues, but she doesn’t know how to. As you might guess, she’s pretty “dominant” in me at this moment.

Jane: Firstly, of course, she just wants “us” to hold on. She wants to be able to be proud of herself, and she hopes that all the worries about college are just over-anxious thoughts. She feels that “we” should just keep up, cause it cannot yet be known whether college is truly too difficult. Of course, she also just thinks that any sort of admitting that I have difficulties, is weak. I am getting increasingly aware that I project her (hence my own) ideas upon others.

Brenda: She doesn’t care, as usual. She has become more and more a “flat character” over time, and I could almost equally well call her Indifference (she has more traits than that, but not much). I sometimes wish that I could be her, letting go of everything.

Elena: She doesn’t think much about college. She won’t have to go there in a long while, so why should she be concerned. At times, she helps Clarissa arrange stuff, but mostly she’s just a normal teenager who thinks about college the way I used to when I was in the eigth grade or so: she’s excited, but doesn’t have to go for a long while.

Milou: Well, she’s eight. What do you expect? She wants to go to college when she’s big, but is feeling very overwhelmed by the current stuff that’s going on. She wants to play, to be comforted, etc., like an eight-year-old would. She clings to Clarissa, but Clarissa has to do the practical arrangements and to figure out how to enhance the transition, so she has no time.

It’s very confusing to realize that all of these are my own views. I can sort it out to some extent, but am often feeling really weird and having very mixed feelings about this stuff. Obviously, cause I sometimes have six different viewpoints that are all mine, but I’m getting a bit frustrated by this stuff.

Astrid