#IWSG: Post-A2Z Ramblings

And yay, it’s May! It’s time for the Insecure Writer’s Support Group (#IWSG) day again. As you may have noticed, I didn’t write for the past few days. As such, I didn’t finish the A to Z Challenge. I am still thinking of doing at least the letter Z post, for which I have a cool theme.

The reason I didn’t finish A to Z is that, on Saturday, when I was supposed to do the letter X post, I was off to my parents’ all day. I didn’t get home till past 11PM and, though I had my phone with me, I didn’t really have time to write at my parents’. That’s a good thing in a way, in that I didn’t feel the need to retreat. Usually I do feel that need, as I find conversing in general and with my parents in particular challenging. Now, not so.

I had a good visit with my parents. No hard questions. We did discuss my life a bit, but mostly it was about my premature birth and what has become of my treating neonatologist. I think I mentioned in my letter Q post that I wasn’t even sure he’s still alive. Well, he is, as he’s still a member of the Dutch Pediatric Society. I assume he no longer practises as a doctor though.

Then on Sunday, I felt just too tired to write. If it had been an easier letter I’d have to write on, I might’ve found the motivation to catch up that day, still giving me two days to complete my letter Y and Z posts. Well, it didn’t happen. Then on Monday, I spent the day at day activities and then was off to my in-laws. Yesterday, I started to write a different post, but got frustrated with my Mac and iPhone again, so I didn’t write then either.

My husband encourages me to finish the challenge late, so that at least I have some sense of succeeding rather than feel I failed the challenge yet again. I understand his point of view, but I have several other posts I want to write. So, we’ll see.

Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Voice: Expressing Myself Through This Blog #AtoZChallenge

Welcoem to the letter V post in the #AtoZChallenge. This letter was very hard. No topic came to mind spontaneously, except for “vision loss”, which I already covered in my letter B post. So I looked at a book of journaling prompts which has, among other things, a prompt for each letter of the alphabet. The prompt for V was “Voice”. The attached question was to write about something you’ve always wanted to tell someone. I am instead going to write about the way I use this blog to express myself.

When I started this blog, I intended for it to be as free and open as a public place on the Internet could be. I didn’t want to feel limited by beliefs about what should be blog-worthy. In a way, I wanted this blog to be as authentic as my first online diary was, before I knew the impact of sharing stuff online. I would, of course, take care to avoid using people’s real names – something I didn’t do back then -, but I would not keep much hidden to prevent getting criticism.

Now, nine months on, I must say I reached this goal most of the time. Of course, there are still things I don’t share on here, but those are things that shouldn’t go on the Internet at all mostly. Like, I don’t go about describing an argument I had with my husband. In this sense, it is good that my blog isn’t like my first online diary, in which I did describe every argument with my parents.

I still do care a little about the quality of my posts, but that’s not bad. I mean, maybe I wish I were as open as some of my online friends are on their blogs, sharing stuff I share in small E-mail groups on here. That probably won’t happen. My inner critic is too harsh for that, and I don’t even know whether that’s a bad thing.

Unusual Interests: Calendar Calculation and More #AtoZChallenge

Welcome to day 21 in the #AtoZChallenge. Today, I will be writing about my unusual interests. You see, like many autistic people, I tend to have interests that are intense and unusual in focus.

As a child, I was advanced for my age in math. When I was around six, my father taught me to do square and squareroot calculations. He used a set of squares (which were really computer chips) to teach me, laying three in one row and then squaring it to nine. I loved this.

When I was eight and the kids in my class were doing multiplication tables, this would be boring to me, as I had all tables from one to twelve memorized already. To make the activity useful for me anyway, I chose to start with the table of nineteen. Don’t ask me why I skipped thirteen to eighteen, but I did.

When I was a bit older still, I taught myself to do calendar calculation. Most people not familiar with autism I encounter have never even heard of that skill, which is a common savant skill in autistics. It involves calculating on what day a certain date falls. Usually, this skill is presumed to be memory-based, but I actually knew the rules for doing it. I also learned about the change from Julian to Gregorian calendar in 1582 and took those ten days that were skipped into account when working with dates before then. I have a newspaper article from late 1999, which I still treasure, titled something like “the fight about time” in Dutch. It explained why the year 4000, unlike other centennial years divisible by 400, shouldn’t be a leap year. How fascinating!

Later, I developed other “unusual” special interests. For example, I used to draw maps when I was around ten or eleven. I always drew Italy, though I knew a lot about topography in general.

When I was in the psychiatric hospital and touring potential supported housing places, I had no idea about their location, except which trains and buses to use to get there. I wasn’t as good with topography anymore. I at one point had most bus routes in my province memorized from Wikipedia.

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.

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.