Welcome to my journal. I have been an avid writer for almost as long as I can remember. I started with fictional stories, and later, around age eleven, first tried my hand at rather stereotypically emo girlish poetry. It was at around the same time that I started my first journal, which was, at the time, a hand-made paper book with braille pages stuck in it. In 1999, I started keeping a journal on the computer. This was much easier, but there was the risk of computer crashes, and each time my computer did crash, I used to be worried about my journal. It however remained intact till May, 2003, when during a major computer crash I lost all my work from December, 2002 onwards, including all my writings in the diary since that date. That marked the end of my three-year-old computer diary. I currently have an offline diary again, which is meant for writings that are too personal, rambly, boring or just plain completely irrelevant to the Internet world.
The Internet started demanding increasing time from me from the summer of 2002 on. As soon as I got a connection, I started surfing around the web, and later, started participating on forums and E-mail lists. My combined passion for the Internet and for writing, of course, eventually led me to the online journal, which I first started in late 2002.
Openness has been an important issue in this respect: do you remain anonymous or not, and how much of yourself do you share on the web, theoretically for the entire world to read? My first online journal, I kept anonymously, and really personal entries used to be password-protected. I however quickly realized that one’s never completely anonymous on the Internet – my relatives found out that “Elfenkind” was me, eventually -, and therefore decided against anonymity or the illusion of security. As I got more online friends, I did do some journaling in password-protected or “friends only” posts, but these journals generally died because I finally chose to write offline instead. Dealing with issues that are too personal to share with either strangers or relatives, depending on your perspective, can also be done by not putting them on the web in the first place or by being cautious in how you share them. I know that my writings can and will be read by both strangers and relatives, and I’ve gotten many reactions to what I wrote on this blog. These, including critical ones, are welcome and valued. Also, I do my best to preserve the anonymity of other people, but if you feel your privacy is violated anyway, let me know which writing(s) you’re referring to, so that I can remove them.
Now, let me introduce myself. My name is Astrid and I was born on June 27, 1986 in Rotterdam, Netherlands. Because that is three months premature, I was placed in an incubator and had to be on oxygen. I remained in Sophia Children’s Hospital for 94 days. While there, I suffered several common preemie conditions, including a brain bleed (called IVH in medical jargon) and an eye condition that no-one ever spells correctly, called retinopathy of prematurity (ROP). This condition caused me to be severely visually impaired as a child and later to go blind from its complications.
I was initially sent to public school, but a few months before the end of my second year in Kindergarten, I transferred to a school for the visually impaired. I remained in special education until 1999, when I went to a public secondary school (high school) in my hometown of Apeldoorn, from which I graduated in 2005. After that, I went for training to the rehab center for the blind and after that, an independent living training home for people with disabilities. While I was there, staff started noticing my difficult behaviors, which had always been there but had never signaled a serious problem to my family, and we together decided to go to the local mental health center for evaluation. This led to my diagnosis of an autism spectrum disorder. This diagnosis marked a change in my life on several grounds. For one thing, it meant that I would have to decide whether I felt autism was a bad thing that needed to be cured. I’d already taken a stand against cure before my diagnosis, and decided to stick with this belief after I myself was diagnosed. This, however, does not mean I accept every autistic behavior I or others might exhibit, that I don’t think I have problems cause of my autism, or that I don’t need autism-related services. None of these assumptions are true and all of these could damage the lives of autistic people.
Besides autim, I have other mental health issues, like anxiety, self-injury, and being multiple. In 2010, I was identified as having dissociative identity disorder (DID) and PTSD. I believe in the social model of mental illness, which embraces neurodiversity, too. For clarity’s sake: this does not mean being anti-medication or anti-treatment.
I started college in 2006, majoring in applied psychology at Saxion in Deventer. In 2007, however, I transferred to Radboud University in Nijmegen, majoring in linguistics. I also moved into my own student apartment. I was at university for only two months before I switched to studying psychiatry from within by being institutionalized for what turned out to be way longer than anyone should ever have expected. I finally moved into resocialization (or “reso”) in March of 2009. This is an inpatient placement whose purpose is preparation for a move back into the community. I, however, will remain institutionalized, although at a different facility: sometime in 2011, I will move to something called a workhome for autistics. One positive thing is that I am back in college, albeit with an extremely small courseload at Open University.
Hi Astrid,
Is there an email address people can contact you on?
Yes, I’d like to email too.
We are open to chatting with other systems! If anyone wishes to reach us, The Klatch can be reached at WeAreJessica@gmail.com
-Lillian
Just discovered your blog…
Are you the poster known as “ChangelingGirl” on Ouch? If not, she’s also blind, autistic and from the Netherlands – which probably isn’t such a rare combination, but rare enough that i thought, if it wasn’t you, you and her might be interested in getting in touch with each other…
Thanks for checking out my blog. I’m ChangelingGirl indeed.
Hi Astrid,
I am an academic researcher looking into blogging and disabled women. I was happy to find your blog and include it in my study since I had difficulty spotting european blogs of women who write in english. I have information about the project in my blog
http://madissertation.wordpress.com/
I would very much appreciate it if you could take a look at the questions I have published and decided to participate in the project and if you were interested to be contacted further by email.
Thank you in advance,
Aristea
Hi Astrid,
I just wanted to say thanks for the great information you have on your journal as well as your website articles. I’ve been reading about your experiences and ideas for a long time tonight. You are a very inspiring person. I’m so glad I stumbled upon your corner of the Internet.
Thanks again,
Whitney
I have just been reading your journal and find it very interesting. I’m deafblind with Asperger syndrome. Like you I am also into writing. I’m writing a fantasy novel at the moment called ‘Demon Decendants’. One of the characters in it is a blind and autistic mother. Like you I also feel strongly about Pro life issues. I am also not a curebie. I want to be accepted for whom I am. I was also born premmie. On top of which I have thyroxine difficency, petit mal epilepsy and profound deafness.
I have up until now had quite a bit of useful vision. I stil have some vision in some lighting conditions but most of the time for practical perposes I a am totally deafblind.
I am also living totally independantly. Well I pay someone to help clean my house once a week, and my dad isists on doing that too. I do cook (or warm up) by myself take Jilli out, feed the critters and I am learning long cane tecniques. Jilli is a retired guide dog but I’m going back to using a long cane.
If you want to email me Please contact: dreamavdb@googlemail.com
Hi Astrid,
I find your journal both interesting, and inspiring. My “learning difference” is dyslexia, which I find really frustrating and tiring at times – reading is a real chore
It took me more than 30 years to get diagnosed as having dyslexia because I had too much pride. My daughter’s determination to survive, to overcome her premature birth and subsequent disability empowered me. I suddenly realised, that my frustration related to both of our treatments at school. She was not going to miss out on education as I had.
I will continue to fight for the rights of people such as my daughter, and when I feel like giving up, it is people like yourself who help me carry on.
Please continue with your journal, it’s brilliant!
Alan
I enjoyed your insights into the idea of resocialization.
I am glad I took the time to read here. You are a remarkable person. Many in your situation would have given up. I will keep checking back.
My website is newly under construction, so you won’t see much for a while.
You write well.
Astrid,
You are a very impressive person:)
Hi Astrid,
I ran across your blog searching the keyword, “multiplicity”. I’m wondering if you would be all right with me putting this blog on my blogroll?
The account I’m thinking of is largely a craft blog @_@;…I didn’t want to put too much personal information out there. But the thing is that I’m pretty strongly into crafts and also pretty strongly not-traditionally-gendered…and when I let on to that…as it’s impossible not to when detailing garments I actually *want* to make? well…
When I search “sewing” on Tag Surfer (right now I’m into sewing), I come up with a lot of hits from people who seem to be women, and…there is a lack of commonality there. So when I’m posting about blending gender cues in the garments I’m making, or ([Deity forbid] blending gender cues in the non-Western garments I’m making with non-Western fabric) I get nothing.
So I’ve been doing some searching tonight trying to find places to reach out to, which are mostly not craft blogs. At the moment, I consider myself “strongly faceted,” but because of my cultural diaspora, I’ve been developing a different take on “multiplicity” than the one I’ve heard from most other quarters. It still isn’t fully developed yet…but I suppose that’s the joy of life. ^_^;
I was impressed on looking more deeply at your blog to see that you’ve also been talking about autism-spectrum stuff and gender stuff, without veering into anti-psychiatry territory. I think we’d get on well.
Anyway, please let me know, if you see this.
Fantastic blog, I have only just discovered you! I have a friend in The Netherlands who blogs also she goes under the name of Lonely Wallflower and the link for her blog can be found on my blog.
You are without a doubt a fantastic writer!
THE ARTICLE IS VERY INFOMATIVE AND MIND TWITTERING IT IS OF GREAT HELP FOR THE TEACHERAS
THE BLOG IS QUITE MEANINGFUL AND KNOWLEDGE WORTHY IT IS GREAT TO SHARE SUCH A PIECE OF INFORMATION TO THE GLOBE
We have undertaken the task to be more visible on campus (to an extent). So, we really appreciate your website, seeing other systems speak for themselves as movies and soap operas appropriate, exaggerate, and further stigmatize multiple systems. It is so important that multiples are seen and heard.
We recently stayed at a crisis center where the staff did not believe that DID or multiple’s existed. It became anti-thetical to stay there. Their copy of the DSM-IV did not include DID. I do not know if I looked in the wrong place or what. I am encouraged to hear the DSM-V will likely have it added.
Sincerely,
-OMC
Hey. i stumbled across this (not with stumble upon, but actually stumbled) when I was looking up information about the medical model of mental health. you write SO beautifully. I was also born three months premature, lived in an incubator (in indiana), had similar health complications early on). thank you so much for sharing. brilliant
sounds like you have many complex challenges yet you articulate yourself well. It’s hard to imagine how using the internet would be like without sight.
Dear Astrid,
Among a handful of others, there is a strong kudos to your blog that you should be very proud of.
I don’t want to rob you of your ability to write by attibuting it to autism, but I have to say that apart from a couple of highly functioning musicians I know who write beautifully too, you are the only person who also writes about mental illness alongside autism.
Keep it coming – I think you are utterly fascinating and will stick you on my blog roll for sure.
Best hugs,
Clarissa X
http://www.justdifficult.com
Hey Astrid, are you on IGDID too? Randomly found your blog and sounds like the same person
Found some of the entires on this blog very interesting. You’re a very insightful person with some very interesting notions and theories on a lot of things.
I don’t think we’ve ever spoken to someone who is a Multiple who has alters rather than ‘actual people’ (in a psychological sense), even though the percentages of people who are actually medically diagnosed with DID tend to have alternate personalities anyway.
We’re a naturally based multiple system, and ‘self diagnosed’ as well, meaning we don’t have DID but are simply a system of more than one person sharing a body.
We found this blog while typing in Mutliplicity in the google searchbar, and now we’re going to add this into our favourites tab so we can access it later. Keep on writing and living~
[...] http://astridvanwoerkom.wordpress.com/aboutme/ [...]
[...] http://astridvanwoerkom.wordpress.com/aboutme/ [...]
Excellent writing. I have a 15 year old daughter who was popped out of mom at 24 weeks, 17 ounces. Only recently found it was probably due to MTHFR genes 677 & 1298. We live in the woods & have to travel to the big city to see a multitude of specialists for RUNX1 issues, ROP, & anxiety among other things.
Put buy cheap viagra your sword in her scabbard