Travel: My Most Enjoyable Vacation #AtoZChallenge

Welcome to day 20 in the #AtoZChallenge. I am feeling a bit frustrated with myself at the moment and as a result not as inspired to write. I hope this mood will lift while I’m in the process of writing this post. Today’s topic is travel. I was inspired to write about this by a nightmare I had last night, which was about a summer camp I attended in Russia in 2000. I don’t want to revisit that right now, so will instead be writing about my most enjoyable vacation.

This was, incidentally, also a summer camp. I attended the International Computer Camp for blind and visually impaired students in England in 2002. Because of my negative experiences with the summer camp in Russia, I had my reservations about going to this camp. Of course, this time I wouldn’t be the only blind person, but I still worried that I wouldn’t fit in.

The computer camp was held at a college for the blind in Loughborough, a town in the East Midlands. For this reason, we also took a trip to the West Midlands to see the Black Country museum or that’s what I remember it being called. This was something about the industrialization of England, but I wasn’t able to follow it much.

For most days, we had two workshops we could attend on computers and technology. I at the time had just discovered the Internet and was excited to learn what cool tech there was out there. I attended some workshops on word processing, but also on music and audio. I was also lucky enough to be on the editorial staff for the camp newspaper. I loved this and this was probably one reason I later began an online diary.

The staff worked at various disability agencies in their respective countries. One person I remember well worked at the University of Karlsruhe, Germany. He helped visually impaired students find their way through college. He taught a workshop on studying abroad, though it was more of a general survival skills for blind students workshop. This was perhaps the best experience I had there. It helped me realize that I wasn’t the only blind person out there trying to follow her dreams.

This was also the general message I took home from the camp: I am not alone. I met lots of blind and visually impaired young people from across Europe who were facing the same issues I was.

I returned to the international computer camp in 2003, this time in Switzerland. I liked that a little less, possibly because the Dutch staff who attended this time were a bit more pushy about my independence. I still enjoyed it though.

Soap: The Fun of Bath and Body Product Making #AtoZChallenge

The First Soap I Made

Welcome to day 19 in the #AtoZChallenge. I’m so excited to share today’s topic, as for today, I will be talking about a special interest of mine.

In the summer of 2016, I discovered soap making. An online friend of mine, who is also blind, had been doing it for years, but I hadn’t given it much thought. Then I decided to buy a starter kit. It contained melt and pour soap base, colorants, fragrance oils, a mold and other supplies you would need. I went about making my first soaps and they turned out okay. I need to say here that I’d tried a ton of other crafting hobbies before, including card making, polymer clay and jewelry making. Though my jewelry turned out okay’ish too, all my other craft projects turned out rubbish. I didn’t notice it at first, so I had some reservations re my soap making too.

The good thing about soap making, is that the result, even if it isn’t visually appealing, can be used. I have several soaps that were too bad for gifting, but I use them in my bathroom.

I cannot make soap completely independently (yet). I have tried, but then my kitchen became a huge mess. However, my soaps usually turn out pretty good if I get some help.

Besides soap, I’ve made body butters and lip balms. I like making those too, but they’re more work. I’ve also tried my hand at body lotions, but they never turned out good. I still would love to make those someday, as their visual appearance isn’t as important as with soaps.

The friend I mentioned above doesn’t use colorants in her soaps. I am still figuring out how to work this thing out, as white soaps don’t appeal as much to sighted people, but with colorants, you have to be careful to match the color and fragrance. I’ve made a few big mistakes in this respect, including a purple soap with coffee fragrance.

Share Your World (April 22, 2019)

For the first time in a long while, I’m once again participating in Share Your World. Today’s questions are very interesting.

I tried to write this post on my Mac, as I cannot copy the questions on my iPhone. I finally however decided to continue on my phone, as the WordPress editor is hard to use on the computer.

1. Was the last thing you read digital or print?
Digital. I am blind, so cannot read standard print. I rarely read Braille either, although I recently received a Braille letter.
2. Are you more an extrovert or introvert?
Introvert for sure. I definitely am not energized by a lot of interaction. I also prefer a few deep friendships to having a lot of acquaintances. That being said, online I can be more of an extravert.
3. How is your life different from what you imagined as a younger person?
Very. I am not sure there’s any resemblance, in fact. As a teen, I imagined being some type of university professor when I’d grow up. I for sure didn’t imagine doing day activities at a center for people with intellectual disabilities. I also didn’t imagine having a husband. The only thing I did imagine at the time was being a writer. I didn’t know about blogs at the time, but did know about online diaries. My online diary gradually morphed into my first blog.
4. Do you think about dying? Does death scare you?  Why or why not?

Yes, of course I think about it sometimes. I saw a man shortly before his death last January at day activities (a fellow client) and this did make me acutely aware of the finiteness of life. Death doesn’t really scare me, although sometimes it does.

Additional Gratitude Bonus Question:  Who has been the kindest to you in your life?

My husband. He loves me despite the fact that I can be quite blunt and a pain in the arse to be around.

Religion: My Thoughts on Spiritual Belief Systems #AtoZChallenge

Welcome to a possibly even later day 18 post in the #AtoZChallenge. I was visiting my sister-in-law with my husband earlier, so didn’t have time to post this one earlier today. Today’s letter is a hard one too, in that I didn’t have a topic set for it prior to today. This post may be controversial, as I am going to share my thoughts on religious belief systems.

I was raised atheist. My mother grew up in a small, sectarian Christian church, so she despises Christianity in particular. My father did tell me about religions when I was young. However, when I went to a Christian school for the blind, because it was the best school for the blind, the teachers refused to respect the fact that we’re non-religious. This got both of my parents to hate religion even more.

I started developing an interest in spirituality at around age 15. At first, it was just New Age’ish stuff and I didn’t look into it deeply.

At around age 18, I started being interested in Christianity. I didn’t go to church, as I didn’t feel ready to do that. However, I did start to read Christian devotionals and Bible verses and stuff.

When I was around 26, I started going to church regularly, only to stop going again by age 30. I still feel Christianity has a lot to offer in the way of spiritual guidance, but like I’ve said before, I don’t like the politics associated with it.

My husband got confirmed into the Protestant Church of the Netherlands in 2010. I attended the service and felt really off, because one of the hymns played made me feel like those who don’t believe, will burn in hell. This thought has always sat uneasy with me. It did with my husband too, which is why he rejected Christianity ultimately.

I currently use both Christianity and general spirituality as inspiration. In other words, I subscribe to what in the Netherlands is called “something-ism”. This means that people believe in a higher power but don’t subscribe to any particular religious belief system.

Quality of Life: Its Impact on Me #AtoZChallenge

Hi and welcome to a late day 17 in the #AtoZChallenge. The letter Q post was what got me to quit the challenge last year, as I kept making up my mind about what I wanted to write about. Same today, until finally my husband suggested quality of life.

Quality of life is a public health concept determining the effects of health conditions or treatments on people’s functioning and wellbeing. It is a commonly-used term in assessing people a long time after an illness or medical treatment happened, to determine if treatment is worthwhile. For instance, in the mental hospital, we were expected to fill out quality of life assessments twice a year to determine if treatment was helping us.

Quality of life is subjective, but it is often tied in with objective measures of functioning. For example, someone who is unemployed is expected to have a lower quality of life than someone who has a job.

I feel very conflicted about the concept of quality of life, as in some cases, it is used to justify euthanasia or withholding of life-saving treatment. This is particularly the case with babies who are born prematurely. Here in the Netherlands, not all babies who can medically be saved, will be, as with those born under 24 weeks gestation, it is deemed that the risk of poor quality of life later on is too high.

I, having been born at the borderline of treatability in 1986 at 26 weeks, have always been concerned with this issue. In this sense, a comment by Dr. Fetter, who coincidentally was my treating neonatologist, in 2004, is striking. He said he sometimes meets former preemies whom he has saved about whom he thinks: What have we done?!” I was at the time 18 and just about to realize that I wasn’t going to be the successful university professor my parents hoped I’d be. I wondered whether I’d be seen as one of these “what have we done?” cases.

I’ve had some debates with my parents about quality of life. When I was in the NICU, my father asked Dr. Fetter what they were doing, setting the conditions so that I may survive? “No,” the doctor said, “we’re just keeping her alive.” He (or his nurse) added that, if my parents disagreed, they’d lose custody of me. My parents were legitimately concerned with my quality of life.

Now that I’m 32 and no longer live with my parents, and having told this story multiple times, I can somewhat distance myself from the feelings that come with this. Before this, I’d often feel that I had to prove I met my parents’ standards of a good enough quality of life or I’d sort of retroactively be left to die. This is, of course, nonsensical.

Premature Birth: Living with “Preemie Syndrome” #AtoZChallenge

Welcome to day 16 in the #AtoZChallenge. I am feeling very uninspired and unmotivated once again. In fact, when my husband suggested I postpone today’s post to tomorrow and do it on procrastination, that felt tempting for a bit. Instead, I am doing it on the effects of premature birth.

I was born at 26 weeks gestation. This means I was over three months premature. I weighed only 850 grams. I had to be put into an incubator and had to be on the ventilator for six weeks.

I already shared in my B and C posts about the effects of my premature birth on my eyes and brain. Retinopathy of prematurity caused me to go legally blind. A brain bleed, called an intraventricular hemorrhage, caused me to develop hydrocephalus and possible cerebral palsy.

Because some preemies have a ton of hard-to-explain issues that fall under no one particular diagnosis, the members of the PREEMIE-CHILD mailing list coined the term “preemie syndrome”. This is of course not a real syndrome, but it is used to describe the fact that many children who were born prematurely fit into multiple boxes of disability to a certain extent, but may not meet the full criteria. For instance, some children’s motor impairments are too mild to be classified as cerebral palsy. Mine might be.

It is known that preemies are at an increased risk of developing neurodevelopmental disorders such as autism or ADHD. Then again, some clinicians don’t diagnose these conditions in preemies, as they reason this is somehow a different condition. I am not sure how I feel about this, as I don’t care about the exact syndrome but more about the symptoms. This was exactly what my psychologist told me to do, and then she changed my diagnosis for all kinds of weird reasons. But I digress.

I don’t mean “preemie syndrome” as yet another label to identify myself with. It’s not that simple. It’s just that we tend to fall through the cracks and I want to prevent that.

Overeating and Overweight: My Relationship with Food and My Body #AtoZChallenge

Welcome to day 15 in the A to Z Challenge. The O is, for whatever reason, a difficult letter. I didn’t have an inkling what I was going to write about until today and then made up my mind several more times. I finally settled on two O words: overeating and overweight. Today, I am going to describe my struggle with emotional eating.

I remember when I was as young as five stealing candy from my parents. So did my sister, but I was always the one initiating it and taking the most. My parents thought it was funny.

Despite this, my diet was relatively healthy until I enrolled into mainstream secondary school at age thirteen. Then, my eating quickly got out of hand. I ate sausage rolls every single day. I also bought large amounts of candy every week, which I’d eat in one sitting. My parents noticed, but other than giving me a bit of a talking about it, they didn’t help me change my behavior.

I don’t really know why I overate in the first place. It was more of a habit, an addiction perhaps, than that it was tied to clear emotional distress. Of course, I suffered chronic stress, so that may’ve contributed.

I had some ritualistic behavior around food too. I didn’t know a thing about calories, but I wrote down everything I ate. This was often ended with a piece of self-hatred. It was true t hat I ate too much, but I made no attempt to change it other than by berating myself for it.

I was curvy from early secondary school on, but always maintained a healthy BMI somehow. This didn’t change till sometime in 2012. I rapidly started gaining weight and continued to gain weight until the summer of 2017. Then, I tried to lose weight. I lost about 10kg and then started gaining again. I haven’t been weighed in in several months and am pretty sure that, though I am not where I was in mid-2017, I’ve gained some considerable weight.

I honestly don’t know how I feel about this. I don’t like the way my body looks and the fact that I am at increased risk for illness and premature death. However, in a sense, I’m too lazy to really do something about it. It’s true that, once again, I experience a ton of stress and I think about overeating on a daily basis. However, I can resist the urge most days. I don’t eat the whole can of peanut butter or something. In this sense, I have the willpower to keep from bingeing. I would really love to get myself to stop doing it altogether. Since tomorrow is my usual shopping day, I am resolving here not to buy myself candy this week.

Names: The Story Behind My Name #AtoZChallenge

Okay, it’s time for day 14 in the #AtoZChallenge and I’m feeling incredibly uninspired. That is, I have a ton of ideas floating through my mind, but none that I can get ahold of. For this reason, I am choosing the same topic I used last year for my letter A post for the letter N. I am going to share the story behind my name.

I used to be very interested in names. I still am to an extent, but I don’t know nearly as much as some of the onomastics (namesakes) bloggers I know. I know what my name means only because I googled it last year. In fact, when I was still big into names, it was more a matter of listing as many interesting and foreign names as possible.

I have no middle name. My name is just Astrid. Because I was born prematurely, my parents didn’t yet have a name picked for me when I was born. For this reason, my incubator was for a few hours labeled “Baby Van Woerkom”. My father was so annoyed by this that he quickly came up with a name and that became Astrid. I am supposedly named after Swedish Author Astrid Lindgren.

Astrid means “beautiful god” or something like that. It is derived from norse mythology.

I at one point asked my mother what she’d have named me had I been born a boy. She said “Lennaert” and wasn’t sure how to spell it. I am currently using the Belgian spelling (I think). My father preferred “Leonard”, which I think is much better. Still, I”m glad I was named Astrid.

That being said, I’d like to have a middle name. In my teens, I variously used Elena (which matches horribly with Astrid) and Kirsten as my chosen middle names. Both are alters in my system, the ones most active at the time. I don’t think I can choose a middle name though, in case someone in my system would like to claim it. I don’t want to play favorites, after all.

Multiplicity: Living with Dissociative Identity Disorder #AtoZChallenge

Welcome to day 13 in the #AtoZChallenge. I had today’s theme in mind for a while, but then I realized I already shared about my experience of being multiple in early March for DID Awareness Day and Plural Pride Day. Several other possible topics floated through my mind, but none felt right. So instead of choosing a topic I don’t know what to write about anyway, I”m choosing multiplicity again. I will try not to repeat myself in this post. As such, I recommend those unfamiliar with dissociative identity disorder read the post I wrote last March first.

We are a system of, last time I counted, 26 alters. Most are female, ranging in age from one month to 42-years-old. Each has a different role in our system (the whole of me). We don’t subscribe to rigid categories of alters. Like, the currently most scientifically proven theory of dissociation distinguishes between apparently normal parts (ANPs) who do the daily living and emotional parts (EPs), who are stuck in trauma time. Though most of us can be put into one of these two categories, we prefer to refer to them by different terms. We for a while tried dialectical behavior therapy (DBT), in which the different states of mind are called rational, emotional and wise mind. We see the ANPs as rational mind, the EPs as emotional mind and wise mind would be if all these parts can constructively cooperate.

Another way of distinguishing alters is by categories such as protector, persecutor (often a perpetrator introject), inner self helper, etc. We do have an inner self helper of sorts. Other than that, our roles are more complex than these. I mean, some of our protectors can be highly destructive relationally.

As you may know, dissociation stems from severe, repeated trauma in early childhood. This used to be thought to only encompass sexual and ritual abuse, but more and more people are realizing that physical and emotional abuse and neglect can also cause DID. There is no evidence that the severity of one’s trauma can predict the extent of dissociation. For example, we didn’t endure major sexual violation at all, but still have a pretty large system. DID is largely seen as an attachment-based disorder now, so insecure attachment early on could predispose one to further dissociation even in the event of relatively “minor” trauma. I, for one, was at a disadvantage already due to being born premature.

I also think that people on the autistic spectrum are more likely to develop DID than neurotypicals, because living in a neurotypical world predisposes us to a lot of trauma. I remember once, when in a Dutch DID community, being told that autism is so pervasive a disorder that it keeps us from developing multiple personalities. There is absolutely zero evidence for this.

I had a nurse practitioner’s appointment last Thursday. At the end of it, we got to debate the end goal of treatment (even though I haven’t even been formally diagnosed with DID yet). The three phases in treatment are stabilization (learning coping skills and internal cooperation), trauma processing and finally integration. There are some DID therapists who believe merging of all alters is a requirement for completing DID treatment. Others mean rehabilitation into society when they say integration. We prefer cooperation to a full-on merger. We wouldn’t mind if alters merged spontaneously, but we have zero interest in forcing it.

Love: How I Met My Husband #AtoZChallenge

Welcome to the #AtoZChallenge day 12. Today I am going to share a positive story, because I am going to write about love. I have known my husband, Jeroen, for 11 1/2 years and love him to pieces. I want to share how we met in today’s post.

In September of 2007, I was living on my own in Nijmegen. I struggled a lot and felt extremely lonely. I at the time frequented a message board, where I posted that I felt alone. Jeroen was on this forum too. He had been wanting to expand his social circle, so he had decided to get to know some fellow forum members better. He read my blog, which I’d kept on WordPress since early 2007. From that, he decided he wanted to meet me. He sent me a PM asking to have a coffee or tea somewhere in Nijmegen. I accepted.

At first, I was unsure whether I’d be safe. What if Jeroen wasn’t the 18-year-old guy he claimed to be? To be honest, I didn’t know much about him from the forum even though he was an active member. He offered to meet me at the forum meetup in Utrecht, but I didn’t have the spoons to travel there, so I agreed to see him at the bus stop closest to university that the bus I knew drove by.

On our first “date”, we were both stressed. I fell off a step and dropped my coffee. When we sat down on a bench, he asked what type of music I liked. I answered “world music”, as I mostly listened to Latin American music.

After our first time meeting, he PM’ d me to tell me he had mixed feelings about it. So did I. But a few weeks later, he again PM’d me to ask whether we could meet again and I invited him to my apartment. That was probably a bit weird, but I knew no other place in Nijmegen.

When we had just planned our fourth “date”, I was admitted to the psychiatric hospital. I didn’t have his phone number, nor did I have Internet access. I gave my support worker my login details for the message board and asked her to contact Jeroen.

A few weeks later, my father called asking whether he could give Jeroen my phone number. I agreed. Jeroen had found my father’s E-mail address through the whois of his website (that he doesn’t do a thing with). I”m so glad he was (and still is) such a tech savvy person and didn’t give up.

It took us six more months from that point on to agree that we would be calling our involvement a romantic relationship. I am so glad I eventually agreed to love him back, as he’d been the first to say he was in love with me. We will be celebrating our 11-year anniversary of being a couple next month. We got married on the day we knew each other exactly four years on September 19, 2011.