Astrid’s Journal

I did some research on CT-scans to prepare for my appointment this afternoon. I got a flyer at neurology, but can’t read it and didn’t want to ask Mum, Dad or Sigrid to read it to me - I don’t know why, but I feel I’m too focused on this procedure and what it entails. You see, yesterday Mum wished me good luck this coming week and then it dawned upon me that there’s more to do this week than my CT on Monday and the results on Tuesday: I’m starting my second week at rehab. If all is well with the CT, that’ll take up most of my time, since then I can complete the week without difficulty. It’s still all feeling kind of unreal - both rehab and the CT. I had the same last week with rehab: suddenly realizing that I’d not be at home this week cause I’d be at the centre. I’m still curious as to what my schedule will be like this week.

If we create and maintain our identities and self-images because of a need to provide our lives with a sense of unity and purpose… why do we have such a need in the first place?

This is a difficult subject for me. Why would one need an identity, a self-image, in the first place? Why is one looking for unity or purpose? These two are not the same, I think, but they’re related: if one has a particular purpose in life, or a goal to work to (whether that be something materialistic or practical or something spiritual, along the lines of “pleasing God”), one knows what to direct one’s actions to and hence will have a more united sense of self. However, unity in oneself is also significant at much more basic levels: a “purpose in life” sounds so vague while goals or attitudes are more tangible. They also need to represent some unity. I have enough experience with complete confusion on these issues to know that, and yet I would not know why one in fact needs this unity.

I’m not sure that everyone needs one particular purpose in life. I mean, you could define the purpose of life along the lines of “self-actualization”, “pleasing God” or some other vague term, but I don’t see why it would help anyone to know that they live to actualize themselves, or to please God, or whatever. Well, where religion comes in, it does play a significant role of course, as in religion it’s believed that the “good life” gets rewarded and the “bad life” gets punished. But if you don’t believe in an afterlife, like me, I don’t see why it’d help you to know that you live for some philosophically or spiritually vague reason like self-actualization or “happiness”. Maybe I’m too young to wonder about these issues on a more personal level than in philosophy class, but that would only prove that one doesn’t need a particular purpose in this sense.

With regard to more basic kinds of purposes, like goals, it is easier to see why we need them. If you have absolutely no goals in your life, I’m sure you’re getting pretty depressed. Of course, the goal could be something along th elines of “having fun”, but it has to be something. Like, if I did not plan on going to college next year, why would I go to rehab now? Why would I do anything at all except for just sit in my room and surf the Internet? Why would I sit in my room and surf the Internet anyway? Because it’s fun. Then I’m still having the reason of “fun” to do the things I do.

Identity is related to goals and purposes. It is our qualities that shape our goals. It is also others’ perceptios or expectations about us that shape these goals, but they have a strange interconnectedness with our qualities in that humans have the ability to interpret actions and reactions of others. This is what I’ve had great difficulty with over the past couple of years: the interconnectedness between others’ perceptions and expectations of me (or the way I perceived them), my qualities (or what I thought were my qualities) and the goals I’d set for myself, or that I’d thought others had set for me. There has not been any sort of unity in these, and the unity still isn’t complete, and I know that I want this unity. When hanging around in multiple communities, I never make a secret of the fact that I want to “integrate” - I don’t consider that to be the correct wording, since I’m not truly multiple, only have a very inconsistent sense of self (and even wonder if mine is more inconsistent than that of the average adolescent or if it’s jsut that I can’t cope with the inconsistency). I at times obscure that statement by saying that I want the “insiders” to better cooperate and I suspect they’ll merge once they learn to cooperate. That was what happened in 2002, I thought, but it wasn’t really: I decided I knew what was “right” to work on, ie. I defined my goals, and this sense of setting consistent goals influenced my sense of my qualities that related to them. It is happening to an extent now, too.

That still doesn’t explain why we actually need this unity. I know we do - I get completely confused and screwed-up when I feel very “divided” -, but I don’t really understand why it is actually necessary to have a unity in oneself. Healthy multiples, I guess, would also prove this theory wrong, cause they often have very inconsistent identities. Yet they do have a unity in their purpose or goals, otherwise they wouldn’t take collective responsibility and wouldn’t be healthy multiples. I think, indeed, that it’s more about having some goals than about being able to describe oneself with perfect consistency.

On the hydrocephalus forum at BrainTalk Communities, eveyrone is really alarmed, but I attribute that to the fact that I’ve not had my shunt checked in ten years and the fact that I am virtually clueless about hydro. It’s the same as the people on the ROP-support list getting concerned cause I hadn’t seen an ophthalmologist since 1995. That still doesn’t mean I had glaucoma last year - I didn’t. The only difference is that the ROP folks mentioned other possibilities, like sinusitis, while these folks totally focus on the possibility that my shunt might be failing or malfunctioning.

I think the people are more alarmed cause I have absolutely no idea what my condition means, than simply cause of my symptoms. One of these folks at the forum has had no shunt surgery for 25 years, and yet she’s still involved with her condition. The difference, I tell myself, is that my parents say that my condition might have resolved itself. I have not been able to find any information on that possibility - only that some hydro resolves itself in infants. Mum says that the neurosurgeon said something along those lines, yet I remember there also being talk of replacing the VP shunt with a VA shunt (can’t remember what these letters stand for, it means that they’d connect the shunt to something in my chest instead of my abdomen), and I wouldn’t understand why they were talking about that when the thing was unnecessary. This is troubling me, since all folks at the forum say I should get a referral to a neurosurgeon cause I should be checked regularly. Now all the folks at the ROP list also say that one should see an eye doc regularly, which I don’t plan on, but one’s brain is different from one’s eyes. Of course, if the CT-scan turns out to be abnormal, I know to get regular check-ups in the future, but if it turns out to be okay, should I ignore my condition once again? You see, I’m not particularly worried that the shunt is failing - why should it, after all these years? -, but I am puzzled by this idea that my hydro might or might not have resolved itself. Why would I get check-ups if my hydro had gone? Why would anyone worry about the thing at all? Why would I in fact get this CT-scan? It’s different than with the eye stuff: ROP doesn’t resolve itself in adults and the risk of glaucoma persists, and though I haven’t read anything about hydro resolving itself in adults, people say it does. I want this to be all in my head (well, it’s all in my head anyway) and to be the inevitable sinusitis (love that word, becoming synonymous with hypochondria). I just want to go for that CT-scan tomorrow, hear on Tuesday that it’s all fine and ignore my hydro for another decade, but for some reason I’d love to have that one answer: does hydro resolve itself or not? If it does, I can ignore it peacefully and close the entire hydro chapter forever. Maybe, as with the eye trouble last year, I’ll just decide it’s over and I won’t care about my symptoms anymore. The folks at the hydro forum may be shocked by that, but they don’t know I’m also a hypochondriac.

Somehow, I’m feeling there’s some odd similarity between last year’s eye doc’s visit and the current neurological visits, and I wonder if possibly the only explanation of this coincidence is hypochondria on my part. About a week before the headaches and nausea started, I was having tooth pain that continued till last week. The dentist’s only explanation, after two visits, was possible sinusitis. Can sinusitis cause headaches and nausea? I guess so, and even though the few symptoms that did indicate sinusitis (actually only the tooth pain and itchy eyes, the GP didn’t even mention it), were never severe and have been gone for over a week and the headaches and nausea only worsened, that still wouldn’t mean that it isn’t just sinusitis. Symptos of it may persist for quite a while, don’t they? At least, folks always ask if I had a cold “recently”, and by “recnetly” they mean over the past four weeks or so. I didn’t, this time, but who knows? Now I’m having a CT-scan scheduled for something stupid that may be a simple infection. I feel guilty, even though it wasn’t me who got worried about the shunt - well, I did worry about it briefly on Thursday the 18th, but I didn’t even mention that to the doctor as I saw her on the 19th. The only reason the doctor even thought about the shunt was that she saw a scar from it and hence I mentioned my hydro: as I saw the doctor, I’d explicitly decided to censor the brief shunt worries out of my explanation, cause those only indicate hypochondria. And I didn’t even focus on the reasons for worrying about the shunt - I focused on the tooth trouble and some issue with fluid build-up in my hands and feet that’s mostly gone now. Now I’m seeing this neurologist and it’ll probably all just turn out to be fine and then I’m having yet another incident of hypochondria on my record, like the eye stuff last year and the recent dentist’s visits. With the eye stuff and the current neuro stuff, it wasn’t even me indicating the worries (with the eye stuff it was Mum and now it was the GP), and yet the doctor’s visits for nonsense reasons go on my “hypochondria record”. Maybe I should set up a support group for people who are worried they might be hypochondriacs. I’m feeling ashamed and wish I hadn’t gone to the GP last week.

Since my neuro appointment yesterday, I’ve been interested in hydrocephalus as it relates to preemies. Now of course chances are low that I truly have shunt failure, but just the fact that I was confronted with it made me interested. I can hardly remember anything about my shunt or hydro. I do remember my father once looking at my tummy to see if my shunt was still long enough and I remember one visit with my neurosurgeon, but all I remember about him was that he had a foreign accent.

I never even tell people I have a shunt now. About seven years ago, I was going for some physical exam or the like and the folk who did it said something about my shunt, but I cannot remember what it was about. When asked about my medical history while in the evals week at rehab, I didn’t even think about mentioning my shunt. During my physical therapy eval, the folk saw my scar on my belly and asked what it was. I said I have a shunt and he asked what it was for. I said I didn’t know. I truly know very little about my condition. In the 1999 remedial educationalist’s report, it says that I had a brain bleed, probably in the NICU, and that I have a shunt that’s been lengthened once. Apparently, Dad doesn’t even know whether I got my brain bleed in the NICU. I looked up some info on Intraventricular Haemorrhage (IVH), which is, according to someone on Preemie-L, the same as a brain bleed. This info sheet says that most IVH occurs within the first three days of life. I think it’s strange that my parents don’t know when I had my IVH, since this sheet says that only the severe cases of IVH lead to hydro. I thought parents in 1986 were well-informed and if I did have a severe form of IVH, the doctors should’ve known about it, shouldn’t they? This is kind of strange.

For about two or three weeks, I’ve been having strange symptoms of vague headache and nausea. At some point, I got concerned that the shunt that I’ve been wearing since I was a year old might be damaged. I got my shunt to treat hydrocephalus as a result of a brain bleed (intraventricular haemorrhage?) I suffered in the NICU. However, I think it’s not really that which is the problem, cause I may not even need my shunt anymore, since these things which drain the fluid away may heal again with people with my type of hydro. I went to the doctor with my symptoms last week. At first, she just asked if I had problems with this or with that and everything. Then, when I told her I had a shunt, she got real concerned, asking when I’d last been checked, who checked me, etc. She called a neurologist and asked about it. He said he didn’t think the shunt was the problem, but would have me checked within a few weeks anyway, just to be sure, since I’ve not been checked for ten years. Mum says the neurosurgeon who checked me thinks I don’t need the shunt anymore, but I didn’t know that and thought it was just one of these medical tours my parents quit when they moved to Apeldoorn, like with the ophthalmologist they also didn’t take me anymore.

Today I had my neurologist’s appointment. I didn’t really like going cause I thought the shunt couldn’t be the problem anyway and I was concerned it would be a problem cause I’m at a rehab centre. One has to be deregistered at the centre when one is admitted to hospital, but I didn’t know if I was registered on Fridays anyway and I didn’t know if this appointment counted as being admitted to hospital. But I decided I didn’t care and so I just went. I got in the hospital by about 10:00 AM, while my appointment was at 10:10. A woman took me to neurology, where I was met by Dr. Van L. He asked all sorts of questions about what complaints I was and wasn’t having, felt my head and looked into my eyes - something with one’s optic disc and the eyes looking downward may indicate hydro. Then he decided he wanted me to have a CT-scan. He called to make an appointment for within a week, explained that I have a shunt and the pump may be dysfunctional but he didn’t have high suspicions. The CT has been scheduled for Monday at 2:30 and I’ll get the results on Tuesday at 12:00. I got a little concerned cause I’m supposed to be at rehab at 3:15 and I also wondered whether this would count as an admission to hospital. I called Mum and she called rehab. My counsellor wasn’t there on Fridays, so they gave her the residential staff, who said it was no problem and I could just get there after my appointment. I don’t know how long CT-scans usually take, but if it isn’t too long, I might be able to even do something on Monday. They at least said it was no problem. Now I hope the thing will turn out to be alright. If it does, I still won’t know how come I have these complaints, but at least I won’t have a threatening condition.

While having dinner on Monday evening, I sat next to Menno, this young man who used to be at my high school. We talked some about school and stuff. I didn’t let him know that his mother had called my parents so that I’d heard of him before. I didn’t want to come across like some saint for his parents asking mine for advice. That became even more reinforced a while later: we were having rice for dinner and I was spilling quite a bit, and then Menno made these remarks about learning to eat neatly and how much one could learn here. It sounded as if the person who’s been around here for a while is introducing the setting to the newcomer, and for some reason I felt comfortable with this, yet I also thought that actually it should’ve been the other way round: I may be a newcomer to the centre while he’s been there for a few weeks, yet he’s a newcomer to blindness while I’ve been severely visually impaired my entire life.

On Wednesday, I called Mum. When I said I’d met Menno, just to inform her about the folks I knew, she immediately asked if I’d been able to help him with some things. Man, as if I came to the centre for that! I mean, of course everyone comes to the centre partly for mutual support, and I know that there are some ways in which I can help others, particularly with practical problems like computer things or braille, but I’m not some superblind person just cause I’ve always been visually impaired and I don’t start at square one with everything. Menno had indeed been interested when he got to know that I’m a good braille reader and I’d been able to help him with that a bit, so that was what I told Mum. She pretty much exaggerated it, I later heard from Sigrid. I didn’t explain to her that I felt bad being talked to in this way - it trivializes my own difficulties -, cause I have no idea of how to explain this. There are just some things in which I’m obviously having an advantage over the recently blinded, and I’ll never deny that. I’m much farther in some skill areas than all these people, like I don’t need to learn braille or computer skills anymore. And of course it’s assumed that the recently blinded have a much harder time emotionally coping with blindness. On Tuesday, I was talking with a guy who’s doing his education to become a masseur here. I said that I’m the exception that proves the rule that the congenitally blind have no problem accepting their blindness. I hope, for all other congenitally blind people, that I am the exception, but it’s hard to deal with the problem of having to explain what I’m doing at the centre over and over again.

This is not just about my being congenitally blind. I think it’s also when folks hear that I’ve completed a high level high school, that they think that with effort I can continue my education and the like. On Monday, I was talking to a young man who was at the centre for his four-day assessments and the like. He was blinded in an accident eight weeks ago, so he’s starting pretty much at square one with everything. When I explained my reasons for coming to the centre, he said something along the lines of that if I persevere, I can do whatever I want, like go to university etc. He wasn’t meaning to be judgmental I guess, and he’s correct that I have the choice of whether to step back or to go on (he doesn’t have the choice since he’s lost so much at once), but it hurt anyway. I know that all these people don’t know that they’re pushing my buttons with these remarks, and I guess that part of why these remakrs hurt, is my own uncertainty as to why on Earth I need rehab.

Some people are supportive, seemingly understanding my reasons behind seeking this help. They still at times compliment me on achievemtns that I don’t like to be complimented on, like my schooling, yet they seem to get the idea that I need to prepare for university. It makes me feel reassured when people make a positive remark about my choice of going to rehab, just cause I’m myself still so uncertain about this whole stuff. For others, it’s more obvious why they need rehab - they’ve recently lost their vision and start at square one with pretty much everything -, or it is more understandable why they got stuck - like people who always relied on a minimal amount of vision instead of learning alternative techniques -, but I didn’t truly get stuck: I completed my high school. Never mind how exhausted I was as I finished school, I still completed it. I still wonder if I shouldn’t have started university and just waited until I got stuck. Fault confessed is half redressed, it’s said. The Dutch approximate translation of the proverb fits better: it goes something like “it’s better to start over half-way than to realize in the end that you got astray.” Is this true for my current decision? I hope that as I learn more skills whila at rehab, I become more certain that it is.

I’m back from my first week at the rehab centre. It was pretty quiet this week, since not all my classes have so far been scheduled - occupational thrapy/activities of daily living/whatever you want to call it and physical therapy have yet to be placed on my timetable, cause the folks who teach that were on holiday these days.

I arrived at the centre at 12:15 PM on Monday. This was far too early, so I first went to my room and unpacked. Then I had my intro about the living facility, which was boring since I already had it while in my evals week, so we were finished within fifteen minutes. Ten I had two hours of free time before my mobility class started at 3:15. We went to the shopping centre in my neighbourhood and I had to find places like the supermarket and the like, and to watch closely what landmarks I was using etc. At first, I for example was at an exit of the parking lot and had to turn left each time until I found that exit again. So off I went, turning left four times (the shopping centre is shaped like a rectangle) but then I couldn’t find the parking lot exit anymore, since I had no idea what it looked/felt/sounded like, cause I’d not paid attention to landmarks. Then I had to do the same again and watch/listen/feel for landmarks. It was pretty interesting to pay such attention to these things, cause as I said I usually travel on the off-chance. By the way, a physical therapy student was at the centre for his work experience and he went with us. Of course, that led to some comments on my posture, but I can’t remember how often I’ve been told to walk straight this week.

Tuesday was a pretty interesting day. I had some discussions with folks like my counsellor (that’s what I’m going to call the social worker or the like that coordinates the programme), music for ninety minutes, during which class I learnt some new things on the keyboard instrument, and sight training. I didn’t have to explain to the sight training person that it wasn’t my intention to take much effort in seeing as good as possible, and hence when we wrote down the goals with regard to seeking out lighting, the person explicitly put down that it was not meant for getting the best vision possible. That would be paradoxical anyway, since I see best in more light yet my eyes get painful already in very low lighting. We tried some thing called an uplighter, which is a lamp that only shines upward so that you can’t look directly into the light. When in the sight training room, I already felt it was annoying very quickly, yet when I borrowed one to put in my room at the centre, I found that if it had the right position (ie. behind me), I could cope with more light.

On Wednesday, I established the free time record: classes are from 8:30 till 10:00, 10:30 till 12:00 and 1:00 till 5:00 and I had a discussion with a communication training person from 9:15 till 10:30 (yup, she took my coffee break), to determine if communication training and some other things would be useful for me, and my first communication class from 1:00 till 3:00. That’s it as far as classes go. Communication was, by the way, very interesting. I never used to like the topic, since I associate it with long lectures on the importance of such things as body language and yet hardly anything I understand. I told the communication folk, when we were talking, that I thought it would be very difficult, but it was easier than I’d expected. All the other people in my communication class have more vision than I do and all lost their sight later in life, so they had more of an idea of non-verbal communication than I do, but they and the person who gives the training explained everything quite well. An interesting note is, that when we were discussing non-verbal communication, we were talking about whether blind people make less use of gestures than sighted people. Someone said that body language is in a way inborn, yet the trainer said that she’d seen a man who was blind from birth who made gestures like children do, like when he was happy he would clap his hands with all fingers straight, while adults clap their hands while holding their hands slightly curved. I never knew this and I indeed also clap my hands in the childlike fashion. I also notice this with something else: my sister says “hi” when she approaches people and when she leaves, yet when she leaves, she raises her hand. I never do this except when waving, and when I wave, I wave very extensively. This is pretty interesting.

Today, I had a full schedule: crafts from 8:30 till 10:00, textural arts from 10:30 till 12:00, fitness from 1:00 till 2:00 and swimming from 2:00 till 3:00. In my crafts class, I started making a basket of pulp cane. I found it went a lot better than I’d expected. Suddenly, as I was working, I had a memory of my techniques class at my seventh grade special school: I should guess the folks were pretty accommodating to our blindness, yet I was never good at anything. Some of the fact that I stopped most creative arts, is that my vision decreased, yet with crafts this was not the case as far as I’m concerned. I don’t know why it went so well this time while people always used to take it as a matter of fact that I was rubbish at crafts.

In textural arts class, I started with some things wiht Smyrna. It didn’t go that well, at least not as well as I hoped it’d go, but I still got some things done. The instructor asked about my high school and she appeared to know a girl who’s in my graduating class. Oh.

Then fitness and swimming were not too interesting. I know both and did them recently, but it’s still good to be active in sports. Then, I had to wait for a long time for the taxi to come, cause I’d taken far too much time to pack my things.

So, I’m going to take the taxi at 12:15 and will be at rehab by 1:00 PM or so - I won’t have to be there till then cause some people are absent. I’m pretty excited and very curious as to what it’ll be like, as I’ve said already many times. I’m hoping it will go well. Will call home tomorrow cause I’m curious about Sigrid’s schedule and of course cause I want to tell how it goes. All my things have been packed. I used to have lost my sunglasses, but Sigrid found them. Not that I expect the sun to be shining this week - the weather is like autumn. Maybe it adjusted to the fact that I can get to rehab earlier . See you folks later and will keep you updated.

I’m currently reading Planet of the Blind by Stephen Kuusisto. It’s the blind man’s autobiography and it makes a lot of sense to me. This man is blind from ROP, just like me, and like me he also has some useable vision. He had great difficulty accepting his blindness. I tend to feel strange about the idea that only the adventitiously blind have a problem adjusting to their disability. A few days ago, I was reading this article which also makes clear the trouble for congenitally blind people who have not met positive blind role models or who were forced to pretend to see things they truly couldn’t see. The part where Kuusisto describes his childhood and his parents’ reactions to his blindness, sounds familiar in some way, even though I always cringe when people conclude from my description of my parents’ attitude about me that I have to pass for sighted. I don’t: my parents are eager to let me learn alternative techniques - more eager than I am. I did always feel that I had to act “normally”, but this is a word I use very frequently and it’s probably partly my own idea. I truly love this book, cause it finally makes clear that as a congenitally blind person you may still have difficulty handling blindness.