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Since starting my prematurity webpage in 2003, I've had several different versions of my story online. The reason is that prematurity continues to have lasting effects, and these affect me differently as I become older. At the time of this writing - December, 2007 -, I am 21 and in the psychiatric hospital with suicidal thoughts and severe meltdowns (temper tantrums) due to significant stress in addition to my disabilities. Consequently, I expect further revisions in the future.

I was born in Dijkzigt Hospital, now called Erasmus Medical Center, in Rotterdam, Netherlands, on June 27, 1986, and transfered to Sophia Children's Hospital, also in Rotterdam, within a few hours. There, I was placed in an incubator and put on the ventilator. According to the doctors, I was born at 26 weeks and four days gestation. In 2002, however, I found out that I was probably born at 25 weeks and two days gestation. This mistake is controversial, because there are rigid guidelines about which preemies to treat and not to treat in the Netherlands. In 1986, most preemies born before 26 weeks gestation were left to die, because doctors thought that younger babies would run too high a risk of disability. Because of the controversy around my gestational age at birth, I sometimes say cynically that I'm a calculation mistake. However, there are more serious consequences of the mistake. On the positive side, I'm an active advocate for good medical care for preemies at any gestational age. However, on the other hand, this controversy also plays a significant role in how I think about my right to be in this world. Specifically, since I was born at too young an age to be considered treatable by the Dutch standard, and currently may have too significant disabilities to be considered an exceptionally good case, shouldn't I simply have been left to die? In other words, maybe I'm too much of a burden on my family and other people around me to have a right to life. Currently, there is also the fact that I suffer from my own internal experiences - depressed moods and an almost constant state of overload - to the point of considering suicide, but this is not always as bad as it is now.

During my NICU stay, there were good doctors, like my treating neonatologist (Dr. Fetter, who unfortunately is much less in favor of keeping preemies alive as he was then), but there were also very bad doctors and nurses. In one of my previous versions of this story, I told the tale of a nurse commenting on my father's doubting my survival. According to my father, she said that he'd lose his custody if he didn't agree with my medical care. Did he actually disagree? Not necessarily, but he later told me that he did have questions regarding my quality of life - which was, at the time, much less an issue than it is now. He often tells me that he wondered whether I would rub along, and to rub along has over the years gotten a very broad and deep meaning: from simply surviving in 1986, it became showing the results of the energy poured into your upbringing by 2006.

Disability itself does not prevent one from conforming to the standard of rubbing along, even the one set in 2006. My parents are still angry with the NICU nurses, who were careless with my oxygen levels, hence putting me at possibly increased risk for Retinopathy of Prematurity, and the ophthalmologist, who didn't screen me for this condition in time to be treated effectively. However, they say they don't generally have a problem raising a blind child, because blindness doesn't prevent one from meeting up to their standards. Neither did my intelligence - I have a verbal IQ of 154. Still, the fear remained: "Will she rub along?"

I started my education at a regular preschool and kindergarten, with all non-disabled peers. Unfortunately, towards the end of my second year in kindergarten, it became apparent that I couldn't continue to learn in this school. The reason behind this is unclear: my parents say that it was because I needed to learn braille, but I didn't start learning braille, at a school where I was the first braille reader, till more than a year after transfering to the school for the visually impaired, and the first school my parents wanted me to go to, was one for the physically impaired. From the time that I slided into special education on, my parents have fought to get me out, because the low-level education given at schools for the blind, didn't suit my intelligence, and my parents wanted me to make it outside of the care system.

Over the years, psychologists have repeatedly evaluated me. The psychologist who most recently evaluated me, in late 2007, says that this is logical for someone who was born prematurely and who is blind, but I believe part of the real reason is that how well you actually do, doesn't matter as long as you score as doing well on a test. Consequently, my parents took me from psychologist to psychologist until they had a recommendation they were content with, and I had seven psychological evaluations done between the ages of four and twelve. On the last one, in early 1999, it was concluded that I should take the remainder of the school year 1998/1999 to try out at a regular school to see if I did well enough. My parents pushed my admission at a regular high school, had me sit in with a seventh grade class for a week, got me started in seventh grade in the fall of 1999 and never took me to a psychologist again. It doesn't matter how well you do as long as you test as doing well, so my parents still believe that I did well in high school. I never did.

The reason why I didn't do well, wasn't blindness so much. Of course, I'm pretty sure a significant characteristic of mine like blindness must've contributed, and at times I also had difficulty coping emotionally with my visual impairment, but that was not the main reason why I failed socially and emotionally. The main reasons were things that I believe are related to my other disability, that is also common in preemies, but that wasn't diagnosed till I was twenty - a form of autism.

There is something interesting about quality of life and suicidality when prematurity is concerned. In 2002, I participated in a preemie follow-up study. At the time, I had a poor quality of life and was intermittently suicidal, but didn't show it on the quality of life questionnaire I had to fill out. The reason was that I knew why I was suicidal, and I didn't want other preemies to suffer that same fate: I wanted to die because I knew that I wasn't successful enough to have a right to life - and, of course, I'd had too young a gestational age to be automatically allowed to survive -, because of the behaviors I exhibited because of my (then undiagnosed) autism - particularly, meltdowns as a result of overload. But even more did I want to protect others from having to deal with doctors and ethicists and parents judging their lives unworthy of life, like I felt they would do with mine. It doesn't matter how well you do when the test says you do well, and this time, I used this to my advantage.

The question whether I would rub along became significant again in late 2004, as I was about to graduate high school and it was asked what I would be doing after graduation. I planned on going to Radboud University in Nijmegen, Netherlands to major in American studies, but thought that I wouldn't make it if I transitioned by 2005, because I was already feeling that I didn't hold on. I wasn't sure about the reasons for my feeling that I wasn't keeping up, but reasoned that some good training in blindness skills wouldn't do me any wrong, so I decided to go to the country's rehabilitation center for the blind. While there, I acquired better daily living and mobility skills and learned to deal with some of the psychological consequences of blindness - particularly, my resistance for alternative techniques and my fear of asking for help. Behavior didn't become significant till late into my rehabilitation, and I brushed it off by claiming that I was an adolescent.

It was December, 2005 when I graduated from the rehab center, and I wouldn't be starting college till September, 2006, so I decided to take the eight months in between to go to an independent living training home for the disabled. My parents agreed once again, because they would eventually see the results from the energy they poured into me - and they didn't want someone hanging around in their house doing nothing other than a little housekeeping anyway.

At training home, I learned yet more daily living skills, and realized that my being behind on them was more an issue of my never having been taught to clean or cook, than that I had an actual impairment in that area. However, because of realizing this, my actual deficits became all the more apparent, and I realized that it wasn't about adolescence anymore. As I said, in March of 2007, I was diagnosed with an autistic spectrum disorder.

In the spring of 2006, I decided to delay moving to Nijmegen yet another year. Instead, I went to a nearby college to study applied psychology. My parents were furious at first, but agreed to disagree after a discussion with some training home people. This year allowed me to experience what college would be like, and to prepare for moving to Nijmegen by 2007 to study linguistics (I'd changed my mind about my major sometime in late 2006) and live independently with itinerant support. Unfortunately, university was nothing like the college at which I'd studied psychology. I experienced meltdown after meltdown and, within a week, landed in the student counselor's office wondering if I really could keep up. I decided to take half a courseload and some accommodations were made, but I still couldn't keep up. And as for living independently: I had sixteen hours of independent living support, and still failed because I got lonely and couldn't deal with unexpected events that I didn't know what to do about, or that's at least the part that I can grasp so far.

I never felt happy in my situation since moving to Nijmegen, but the stress increased over the three months that I lived on my own. Furthermore, I've been significantly overloaded since the summer of 2007 and this became intolerable by late October, to the point where I want to kill myself to end it all. It is the first time that I'm suicidal due to something directly related to me, ie. an internal experience that I cannot tolerate.

Unfortunately, there's also the old issue of not having the right to life because of the severity of my disabilities, and it's worse than in 2002. My parents come across as if they've decided to give up on me after 21 years of putting effort into me - and they don't see the results of the energy they poured into me -, and the coordinator of my support staff has told me that you can't behave like I do if you want to live in society - even though no-one kicked me out of the house I lived in before being committed to the hospital. It depresses me to know that I'm not rubbing along and my disability is, apparently, too severe to be tolerated in society. Before I became suicidal, I was an active advocate for autistic people's right to liv ein society - and this includes disruptive autistics - and preemies' right to life. I still try to keep this opinion, but it easily comes across as if I don't want to stop bothering other people. Then others tell me how unacceptable my behavior is and I become suicidal because I'm already overwhelmed by my own overload and don't have much more energy to invest in stopping a meltdown, so the easiest solution seems to end my life. At the moment of this writing - December 13 -, I am particularly depressed about this. I always advocated for good care of premature babies, so that they can live, because all the reason why I wanted to end my life, is because others supposedly decide that my life isn't worth living. Now I'm drained and overloaded and still hearing the same things about how I can't live in society if I don't change - even more so than in 2002 -, and I can't stop my suicidal thoughts. I don't want a researcher or doctor to read this, because they might conclude that preemies have a poor quality of life and shouldn't be treated in the first place. I often want to end my life, but I've lived up to the age of 21 to get to this point, and besides, when other people are concerned, I still feel that a little more tolerance would dramatically increase their quality of life.