Astrid’s Journal

I was bored so decided to take a quiz on what’s my political persuasion. The results are pretty much right, even though I think I’m more socialist on the topic of government involvement - I agree with the statement “help people care for themselves”, for example, I support government policies encouraging employers to hire disabled people instead of *only* having high benefits, but I still feel there ought to be government benefits for those who need them. The rest is all correct, except that I assume most Democrats, and especially the younger ones, to be pro-choice, while I’m pro-life.

You Are a New School Democrat

You like partying and politics - and are likely to be young and affluent. You’re less religious, traditional, and uptight than most Democrats. Smoking pot, homosexuality, and gambling are all okay in your book. You prefer that the government help people take care of themselves.

What political persuasion are you?

I called student services at Radboud University this morning. As I explained the reason for calling, ie. that I am blind and was interested in services for disabled students, the woman I talked to referred me to a student counsellor and said I should call back between 4:00 and 5:00 PM. So I called the student counsellors this afternoon and as one of them got on the line, I explained my situation again. She asked me what was going to be my major and informed me that the American studies department has experience with blind students. Then she asked what I needed, ie. how I was going to do my studies, and so I explained about using the computer, the library for the blind etc. She knew everything I mentioned and said that was the way they worked, too. Then she said that I’d better call her in the spring to make an appointment for a discussion with the American studies adviser on how we’re going to do it. As I hung up, I was very relieved and sort of astonished at the fact that this troubled me so much last year. I know that other factors contributed to my difficulty, too, and I also know that I’ve made progress in these past six weeks at rehab. The most noticeable progress is perhaps that I’ve decided I don’t care about my feelings or convictions - I can try to work on changing them, of course - but there are things that just need to be done, such as asking the bus driver where the next bus I have to catch will stop. I first needed to see that my standards weren’t quite logical and that I only applied them to myself and not to other blind people (or intelligent people, or people my age, or whatever), but once I could see this at least sort of rationally, I could decide to use that standard at least for the moment and hence could “experiment” and see that it worked. This in turn helps me feel more confident about using this strategy and by that means holding another standard. There’s still this little voice inside my head screaming “stereotypical attitudes!” and “I have to rub along!” and all that, and I still have to find a way of making myself see that to rub along does not always mean to continue figuring out things by yourself, without asking for help or assistance. The stereotypical attitudes thing is not that serious anymore, as I see very successful blind people asking for help finding their way or going to customer assistance in shops, and hence they can’t have internalized the idea that blind people can’t be successful, ie. holding negative attitudes. The “to rub along does not always mean never to ask for assistance” statement still has the status the “asking for help is not as a blind person automatically bad” statement did a few weeks ago: everyone tells me so, but I still don’t believe it. Of course, the support I’m getting from other students at rehab and people on E-mail lists, who tell me I’m strong for choosing to go for training (the idea that I always have to explain what I’m doing at rehab, is mainly projection), helps me feel more at peace with my situation (at least others don’t feel I ought not to do this), but this feeling is more deep-seated than the one about stereotypical attitudes and asking for assistance, probably cause they’re only my NFB acquaintances who I perceive hold that view, while my parents and people at school at least used to hold that idea about my having to rub along. Further, it also relates to much more than just blindness. I don’t think any of this can be expected to resolve itself in a few weeks, but I’m making progress in putting things into perspective. See, I’m already implying that one idea is better, ain’t I? Should I? Well, at least you can’t say that this isn’t what most of my relatives think - and I would if there weren’t others’ views (or my perception of them) to take into account.

On Monday in mobility class, I travelled into town and then had to find a particular shop I’d never been before. I knew only what direction to walk but nothing else. “Then you should ask for directions,” the insturctor says. “I’m not there.” That’s what he always says when he means he’s keeping an eye on me but won’t help me. So I went up to a stranger and asked for directions to the shop, in the meantime feeling like: well, I was told to do so, but why on Earth do I need to ask for directions to get to that shop? All the Amercians at rehab centres tell of needing to find their way without sighted help, and here I’m being told that I should ask for directions. Of course, sighted folks ask for directions when they’re in an unfamiliar area, too. The instructor, who is sighted, displayed this when I had to find another shop by asking four different people for directions, while he knew the way. It was at once funny and confusing. Of course I know that this is normal, but it feels as though it’s solely cause I’m blind that I’ll have to ask for directions. This feeling was further reinforced by the instructor’s remark that my cane is my excuse, meaning that I wouldn’t have to explain why I needed directions. Now he didn’t, either, but still. It feels sort of strange. Still, I’m noticing that I do ask for help when transferring buses, cause at the station they keep changing where buses will stop. This was something I felt reluctant to at first, too, but that was less, cause I couldn’t think of a way to find out non-visually where bus three stops at a given moment, while I think there should be ways of recognizing shops. I sort of feel that needing directions is in a way dependence. Not that not going out at all is good, but I’ve so been told that needing sighted assistance is bad. Or is this my stupid misintrepretation?

On Tuesday, Hennie asked me what I’d been doing in mobility class, and that got us into the third discussion in a row on the same topic: my ideas about asking for help, needing to learn new skills, etc. I explained y feelings about asking for assistance for stuff sighted folks don’t ask assistance for, like the bus stuff, and about the feeling that after living in this town for nearly ten years, I should know the way around town. She asked me if I had a problem with alternative techniques. “Of course not,” I said, and I noticed that same coincidence again: that the same people who say that blind people are normal and of whom I claim to have gotten the idea that blind people shouldn’t ask for assistance (ie. my NFB acquaintances), are the ones who invented the word “alternative techniques”. I still find it hard to put this together. The discussion went similarly to last week’s, about first having to learn stuff before you know it, only then it was about my feelings about rehab and now about asking for directions. I explained my views to Hennie and if I hadn’t noticed it alreayd, now I see their illogicality. She asked me for a better “rule” to replace my usual one with, and I didn’t really know. Maybe it’s best to just decide that I can’t change my rule cause I feel too ambivalent about it, but that I won’t care about it anyway. You know, I’m still scared that my acquaintances would judge me if they knew I asked for directions in town and asked the bus driver to tell me where bus three stops. This has never been discussed - using a sighted guide is dependent, folks say, and you should use a cane and be independent, but no-one has ever told me where on this continuum fits asking for sighted assistance. Oh well, maybe they wouldn’t care if you didn’t explicitly seek out a sighted person. I mean, I once read an article in which a woman writes about wanting to know how a buffet line is set up and asking someone firstly if he’s a sighted person, before asking about the buffet line. She was confronted on asking “Are you a sighted person?”. Doesn’t it matter if you just ask anyone and know that 99% of the population are sighted? Will sighted observers not notice that you’re asking for directions cause you’re blind, then? But well, they’ll notice that you’re using a cane because you’re blind, too, and that’s what these folks applaud. It’s all very confusing.

Then there’s the simple practical issue, which has nothing to do with philosophical objections or anxieties: how to catch someone’s attention. I made a few failed attempts on Monday and sometimes my “kept from” feeling was holding me back - that’s some type of anxiety, I guess, too, but it’s not related to my feelings or thoughts about the concept of asking for assistance. That’s what’s troubling me when I’ve deicded I don’t care about my rules, such as yesterday when asking where bus three stops, but it’s fairly easy when you go up to the bus ten driver - that’s why I always do that, both to avoid the difficulty of catching someone’s attention and to ease the “first step”, to counter my “kept from” feelings. It works fairly well, but I’ve not gotten used to it when folks are walking by. I hope I can settle this, and if that’s done I should just decide my rules and philosophy can go to hell. Call this centre “traditional”, you stupid inside fighter (cause I’ve long realized that it’s *me* holding these ideas, not anyone else). I want you to persevere, but in the way that people have repeatedly told me I am perseverant or strong: they call me these things both cause of “conventional” accomplishments like my high education, and cause of this current stepping back and going for rehab. I sometimes still need to explain what I’m doing at the centre, but I’ve been counting it last week and the times I tell people I have to explain this stuff far outweigh the times I actually have to explain it. I want to see that one can be independent and strong while still asking for help. That’s a remark made by a folk at the summer programme last year. Traditional attitudes? Do I care? Don’t know.

I’ve had headaches more often than most people for a very long time, but it’s not usualy bothered me. I’d call it my “Tuesday afternoon, Latin headache” cause when I first noticed it being annoying, I had it about every Tuesday after seven hours of class, the last one of which being Latin. That was in ninth grade. However, I didn’t really think much of it and still don’t think much of the chronic but mild headaches - “just” tension headaches, I assume. When it started getting worse about six weeks ago, I did worry somewhat and indeed eventually saw the doctor, who as you know referred me to the neuro to have my shunt checked. It was all fine. At first, I was feeling only partly relieved because I felt guilty for ever having cared about my hydro, but well, I’d never made a secret of the fact that I have hypochondriac tendencies and even so, I did have hydrocephalus, even if I’d compensated by now. The headache seemed less, so I just hoped it’d go away and be a variant to last year’s eye pain - which, by the way, didn’t limit itself to last year (it sometiems goes along with the headache). Then yesterday I had an “episode” again which lasted for two hours, but it wasn’t too bad - less bad than my terrible headaches of middle and late August. Then this morning I was awakened at 6:00 AM by a bad headache. As almost always, on only my right side (it sometimes travels to the left side or the back of my head, but always starts on the right side). This one lasted for four hours and I got some nausea with it. I just want it to be over!!! When I posted to the BrainTalk headache forum, complaining that it’d been going on for six weeks already, I suddenly realized that some people go years experiencing headaches without a proper diagnosis or treatment. Six weeks isn’t long for the participants on that forum, but it *is* long if you consider it to be a simple infection or the like. And I don’t even know if it’s that - it was only what the GP theorized after the neuro had told her it most likely wasn’t the shunt. Now I just know that the CT-scan showed no reason for alarm and that if my symptoms persist over a couple of months, I should call the neuro again to have a new CT. I don’t even believe myself that it’s the shunt. Indeed, six weeks isn’t long enough to wonder what is going on, if it’s something else than a transient infection or “normal” headache (the words the neuro used, whatever “normal” may be). I’m just whining, I know, but six weeks *is* long when needing to feel that it’s not anything to care about.

Yesterday evening, I had a discussion with Mum on what to do after I’ve finished rehab. I’m going to apply for a room in Nijmegen by November 1 - tht’s the first day one can apply. Mum said I might get a room sooner cause I’m blind, but also got into a litanny of all things I’d need in my room. I didn’t agree and I said that you shouldn’t have too many requirements cause then you’ll have to wait for ages for a room. She got like “But if you need this and that and otherwise you can’t live in that room, you should demand those things.” Of course, but then I’ll have to wait longer, and if possible, I want to move out by September, 2006.

Then we spoke about going into an assisted living facility by January. There’s this facility in Apeldoorn where you do have your own little apartment and do your own housekeeping but you can get some help and can learn new things. My counsellor at rehab mentioned it to me on Tuesday. It used to be only for visually impaired young adults, but now there are people with other disabilities as well. I told Mum I wasn’t sure - all people I know who went into that facility, stayed for like two years, and I don’t want that at all. Also, I’m afraid that the people there will be patronizing, while I just want to be independent. I couldn’t explain my true feeling to Mum: that if I finish rehab by December but just can’t get a room in Nijmegen till September, if I remain with my parents, pay “rent” and do some of the housekeeping, it feels as if I’m just living with my parents cause I can’t get into the dorm yet, like so many college students, while when I go into an assisted living facility, it feels as if I’m not truly independent. I just want to be finished with my “training” when I’m done with rehab. The people at the centre are not at all patronizing and are very eager to teach one new skills, and I’m scared that if I go into that facility, I’ll go into an agency that’s patronizing under the pretext of teaching folks independence. I’ve seen a little too many of them.

Of course, by January I’m not just going to sit on my ass, but Mum still seems to think I am. She said she was afraid I was going to be passive, like I did last year, and she says I’ve done all my life. I said I wasn’t, but I didn’t want her to dictate what I’m going to do, then. Of course, my not knowing how to arrange stuff contributed to my passiveness, but so did my feeling that Mum would kick me out of the house if I did what I wanted, ie. go to rehab. Mum said she wouldn’t easily kick me out of the house and she’d long agreed with my going to rehab - Dad hadn’t, she said, he hadn’t been convinced till he’d spoken to the psychologist on June 9, but she had. Well, this hasn’t been how it came across to me. Dad had always wanted me to go into that college prep programme, but maybe he had no idea what it was all about - that it was in many ways similar to what I’m doing now plus stuff about selecting your major, which I’ve done already. In December, I spoke to Dad about my plans for this year, and he agreed with my ideas. Mum never did and kept saying that university was the least bad option, till I’d told her something vague about what I was going to do in January: volunteer work, I think.

Mum said that as long as I’m taking an active role in planning to become independent, she won’t kick me out of the house. She hasn’t defined that. I’m almost done finding out where to turn for arranging stuff for college, know where to apply for housing, and am calling folks and all that for September. Mum said I still have a year. I know, but I’ve already noticed that I’m telling folks that I should get to call the university. I didn’t tell folks so last year at this time, but I do know how last year went totally stressful until I’d told everyone important about my plans for delaying college a year. I don’t want to repeat that scenario.

Mum made a few very stupid remarks. One was that she still wasn’t convinced that I wanted to be independent. This got her into an “I’m thirty years older than you” litanny which I quickly ended. It truly annoys me: as if I want to live with my parents for another twenty or even five or three years! Memories came back from 1995, when I knew for a fact that I was going to move out on my own when I was eighteen. And yes, I did feel very frightened and was relieved that I still had another nine years. I feel that Mum still thinks that with effort and when expected to do so, I could actually do my own housekeeping, but I still sort of feel this way myself, to the point of not being sure if I’ve made the right decision by going to rehab. That’s why it hurts so much when people seem to suspect me of not showing enough effort in becoming independent. And I don’t even know how Mum defines “enough effort”: last year, I’d not arranged anything cause I didn’t want to go to college, but now I’m getting somewhere. I don’t know what Mum wants me to do besides making sure I can get to college by September, 2006 and can get housing in Nijmegen as soon as possible. I don’t know what she expects me to do. I don’t even know what is my own interpretation and what she truly says. I’m still confused.

The neurologist called earlier this afternoon. He’d not been able to compare the new CT-scan to the old one, since the old one had been taken too long ago - I’d told him so! However, the current scan showed no reason for alarm. He asked me about my symptoms - they’ve not increased but are still there (although I get the impression that my “episodes” of severe headache are slightly less frequent). He said he thought it was most likely “normal” headache, but that if the symptoms persisted, I should call for a new appointment so that maybe a repeat scan could be made. I hope my symptoms will go away.

So, how do I feel? To be honest, I have mixed feeligns. At once, I’m feeling relieved that the CT showed no abnormalities, but I’m also sad not knowing what does cause my symptoms, and I’m feeling sort of guilty that I ever dared to care about my hydro or the shunt. It’s in one way similar to the feeling I had on March 17, 2004 after my visit with the eye doc: I didn’t come to find out that I had no glaucoma, I came cause I wanted to know what was causing my pain. A hypochondriac doesn’t make up symptoms, does she?

In another respect, this feeling is worse: after hearing I didn’t have glaucoma, I could still continue hanging around in the ROP community and learning about the way ROP affects and might be affecting me, simply cause blindnes is significant enough to care about and the cause of my blindness happens to be ROP. What I mean to say is, that over the past couple of weeks I’ve wondered quite a bit about hydro and my neurological issues (ie. the IVH) in general. Am I allowed to wonder about this sort of issues? Am I allowed to regard my hydro as compensated for or arrested but still there? Or should I close the chapter? I still have no definite answer, and there probably isn’t any, but I don’t want to be seen as a malingerer for caring about this condition.

I was very tired as I returned from rehab yesterday afternoon. I had a very busy week and I tried to get home by bus, which I’d learnt in mobility class; everything went okay except that the bus was extremely late, so I returned home at nearly 5:00 PM.

This week was pretty interesting. In occupational therapy class, I had to cook macaroni on Wednesday - it went pretty well. We also discussed my being observed during lunch last week, and have decided to take some time for discussing table manners - not that my eating is really disgusting, but it could be better. I still feel a little uncomfortable about all this, but I think I could learn something.

I discussed my feelings about rehab with Hennie on Monday. She asked me if I had a problem with the idea of doing things in an alternative way. Of course not, I said. I said that I felt that I should already have been able to do all these things. I mentioned the expectations stuff, that I felt that one is only allowed to have these deficits if one admits that one’s parents did not expect one to be independent, while I feel my folks did expect the same of me as they did of Sigrid (okay, she’s two years younger, but then I should’ve Sigrid’s independence level). The folk made the comment that by merely expecting someone to be able to do something, she won’t be able to do it. I, of course had to correct myself and say that this was how it came across to me and that I hoped: I don’t want to be over-protected. So it was my feeling that one should be expected to do fine and if one does one’s best, they’l be able to do it. Well, I hold that standard for myself, I don’t judge other folks on that basis. I’m still feeling confused by this idea, and my subsequent feeling that I shouldn’t be in rehab: folks in the NFB have no problem whatsoever with people going to a training centre, but they still seem to feel that the best thing about the centres is that they expect students to be independent and their view that the general public expects little of the blind, while I hardly hear people emphasize learning new skills. I could say I didn’t care what the NFB says, or what I perceive it to say, cause that’s an American organisation and I’m in the Netherlands, but then there’s still the “rub along” issue, rooted in very negative stereotypes that I’ve had to defeat at the schools for the blind. I just can’t seem to make my own judgment of what’s right in this respect, and the fact that I don’t seem to interpret others’ views correctly, complicates it even further.

We did many other things in occupational therapy class on Thursday: first, I had individual OT, where I had to clean my own bathroom. It went well, despite the fact that I’d never cleaned anything before. Then I had “workshop” (that’s the small group setting) and I made pancakes. It went surprisingly well.

The creative arts classes went all well as well - I finally get the idea of Smyrna, my pulp cane bin is getting pretty far and I also got pretty far with the keyboard instrument in music class. I’m enjoying it all.

I just came across an article on disability and helping others and somehow it struck a chord with me. To be able to contribute even a tiny bit to someone else’s wellbeing has always felt rewarding to me, yet there have been few occasions when I could truly “give back”. I remember in 2001 when Sigrid was ill while she had to babysit for our neighbours across the street, my father asking the neighbours if it was okay for me to babysit. It was and that made me feel sooo happy, cause it gave me the feeling that I was valued as a babysitter for these kids. I later found out it was no big deal for blind teens to babysit, but for me, it was.

I feel somewhat ashamed of this. I’m not crippled, am I? I’m only blind. And I know that it’s not blindness that has kept me from contributing or helping others. Sometimes, it’s an indirect consequence of my blindness, like my restricted mobility both due to poor skills and an inability to use a bicycle or car. Sometimes, it’s people’s fear that a blind person cannot do something, like when I wanted to tutor kids in lower grades when I was in the tenth grade; I had the academic skills, but no teacher let me, probably cause they thought it would be a hassle. And sometimes, it’s my own bad attitude, assuming stereotypes and not knowing how to make clear that I can contribute, and hence standing back. That’s still not the same as not wanting to contribute, but it comes close, and in a way, it’s more shameful, in that it’s using my blindness as an excuse. It’s buying into negative sterotypes - that blind people cannot contribute to society in any way. I am guilty of this attitude. Not rationally or theoretically, but as with many things, it’s very recent for me to realize that talking the talk is different from walking the walk, and that I can actually walk the walk.

Over the past couple of years, the significance or insignificance of some of my difficulties has been an issue for me. I don’t know if this is my hypochondriac tendency, the fact that I already have an identifiable disability, my having been a preemie or something else entirely, and if it’s appropriate or not. What I mean, is that I often get to look for explanations of difficulties of mine that I hardly know whether they are important, such as my social skills or behaviour stuff. The ultimate example of this, of course, was my obsession with Asperger’s Syndrome in late 2002, 2003 and early 2004. At other times, I’ve tried to explain my social and behavioural deficits in other ways, like being the classic example of “asynchronous development” in gifted people or being an indirect consequence of my blindness. None of this seems to fit completely, but in any case, I’m looking to have my difficulties recognized as significant.

I don’t know if this is appropriate. I don’t know if the difficulties I’m experiencing are real, or are important enough to be recognized. My low frustration tolerance was always recognized, but my social deficits were only in 1998 and 2005, not in 1999. And even so, they were often treated as wanting to be annoying - or at least, that’s how it comes across to me. I don’t know if anyone recognizes the impact these difficulties have on me.

At the top of my involvement with my difficulties, in the summer of 2003, I could name exactly in what ways I was and wasn’t having delays or difficulties. Mostly, I limit myself to saying I’m blind, but at that time, I was open about the minor difficulties that were never explained - I was convinced that they were significant, even if they had not been labelled. I thought I knew all about my disabilities/difficulties and I involved myself with them all. If I, like Sigrid, had been suspected of having a buzz near my heart when I was a baby, I was sure to know all about that, while Sigrid, who by the way has no heart problems whatsoever, only jokes about the doctor’s assistant’s suspicions.

And yet even at that time, I was *not* fully involved with all my health problems. You see where this is going? Yes, I overlooked my hydro completely. In fact, during the entire twenty-two months of my all too extreme obsession with all my deficits, words like “hydrocephalus” or “shunt” did not cross my mind a single time. And I even wonder if this was healthy: I’m convinced that my involvement with all my minor problems was unhealthy and maladaptive, but I do remember my mother mentioning the fact that I had a shunt to doctors long after we’d all decided my hydro had resolved itself. For example, when I was vaccinated against Hepatitis A in 2000, on the questionnaire it said something about prosthetics or donor organs, and Mum asked the doctor if my shunt counted as such - it didn’t, according to the folk.

Since my confrontation with hydro on August 26, I’ve been involved with it on a far more extensive level than the question of whether my shunt is malfunctioning or not - I’ve pretty much decided it’s not. Finding out that I had an IVH and subsequent hydro has caused me to wonder about the effects these have had on me. On July 31 I discussed psychiatric outcomes of preemies and mentioned the fact that I would be able to blame my difficulties, if significant, on the neurological damage I suffered due to the brain bleed, and that’s not been new to me, but it was always very speculative: all I knew was that I had had a brain bleed, but these come in various ranges of severity. Mine was probably mild, since it’s never mentioned when going for evals or the like except in 1999. Now, I know that mostly only grades III and IV IVH cause hydrocephalus. The blood clot in my brain was very small, Mum says, so I suspect the IVH not to be severe either - maybe an occasional grade II haemorrhage could cause hydro? Still speculating, still not sure. I think no-one knows. My parents didn’t even know when I had my IVH, while all the literature I’ve read so far states that most IVH occurs within the first three days of life, and Dad even wondered if I had it in the NICU - that’s the first 94 days of my life. I’ve not asked him for clarifications - I got that “probably in the NICU” statement from the 1999 remedial educationalist’s report -, and don’t know if I will. Maybe my father does know how severe my IVH was. Do I actually care? Would it justify my difficulties? For some reason, I feel it does, even without labels like AS. Many preemies have delays that haven’t been explicitly labelled, yet these difficulties have been explained. Some folks don’t need these explanations - they get into vague stuff about such things as NICU trauma -, but I don’t even know if I’m hypochondriac or overreactive, seeing my difficulties as significant, even if they do have an explanation.

It’s exactly two years after the “A vision of success” discussion at the BlindKid list. This discussion marked the beginning of my journey that eventually got me to rehab. The discussion was about an article about a high school freshman who was still receiving many services, like an aide, braille instruction, etc. People were shocked at the fact that a 15-year-old kid still needed all this help. I didn’t understand and asked for an explanation, admitting that I was behind in independence skills. Then, we got to speak about ways I could improve my skills and people mentioned NFB centres. I said I lived in the Netherlands, but we also had a rehab centre here, by chance in my town. This centre is not the same as an NFB centre and at this moment that is causing me to feel somewhat strange - fearing people will criticize me for not being at a centre that’s exactly like theirs -, but I’m still learning lots of new skills here. I’m still feeling uncomfortable about needing training, but I’m happy that I took the step to prepare myself for college. The people in the NFB have been very supportive of me, even though I’m still feeling strange about their philosophy, or the way I perceive it to be, and I’m happy for all the encouragement I’ve gotten from them. In my first week, I was uncertain if I was actually going to learn good skills at this centre, particularly cause stuff like occupational therapy had not yet been scheduled, but now I think I’m learning new things. I’m also glad for all the blind people I’ve met at the centre. I am being looked up to by some, especially those rcently blinded in accidents or the like, but I can look up to some others and see what they’ve accomplished, including some of the staff who are blind. It feels like it’s no longer just theoretical, and that’s a very positive realization.