Monthly Archives: June 2015

Gratitude List (Birthday Edition)

It’s been over a week since I posted. This past week has been pretty rough, but there have also been good moments. Time for a gratitude list once again! I am going to cheat a little and include some items from the previous week.


  1. I spent the week-end at my parents’ for an early birthday celebration for me. It’s a tradition that my parents give me redcurrants and strawberries for my birthday. However, the redcurrants had not ripened yet and the strawberries had been eaten by my parents’ chickens. My mother bought some on the market though, which were much better than the ones I had bought at the supermarket a week or so before.

  2. My husband helped me figure out how to copy music from CDs onto my computer. I copied some of my parents’ music. Also, one of my parents’ acquaintances, who is a singer/songwriter, invited me to her album presentation this coming September. I’ve not yet made up my mind whether I’m going, but it was cool to get an invite.

  3. I got some lovely beads from my parents. They were plastic beads, whic I don’t normally use. I usually use glass beads. However, I was able to create a nice bracelet with some of these beads.

  4. Getting these beads from my parents inspired me to look for acrylic beads in funny shapes and colors to make a memory wire bracelet of. Memory wire bracelets get quite heavy if you use glass beads, so I was happy to find acrylic beads in heart, square, disc, round and even butterfly shapes. I just finished the memory wire bracelet a few hours ago, but don’t have a picture yet.

  5. I have been able to get into a nice exercise routine with the help of my husband’s MP3 player (which he gave to me). It helps me get an idea of how long I spend on the elleptical trainer or stationary bike.

  6. I have discovered a new kind of candy at the institution town’s store. I know, not exactly healthy, but so yummy! I managed to keep from bingeing this week even though I did buy the candy.

  7. Institution meals are notorious for lacking taste. Furthermore, because of a new meal-providing company, we no longer get to choose our meals from a menu each for ourselves. Instead, the nurses choose and we just have to go with whatever is being served. This makes me extra grateful that tomorrow is my birthday and I got to select a birthday meal. It’s still provided by the same company, but the meal I selected (noodles with beef and some kind of peas) is quite good. I got to eat it today as I’m at my husband’s tomorrow.

  8. The weather has been quite good yesterday and today. Today, I wore one of the skirts I bought a few weeks ago again.

  9. My husband took me out to lunch at the restaurant near the institution town railroad station today. I ate a delicious tuna salad roll.

  10. My sister and her boyfriend will be coming over tomorrow and my in-laws will be visiting on Sunday. I’m looking forward to it!


What are you grateful for this week?

Linking up with Reasons to Be Cheerful.

In Which I Describe My Views on Euthanasia

Over at Bad Cripple, William Peace wrote an interesting post on assisted suicide. On my old blog, I had an entire category of posts on end-of-life issues, but here, I never discussed my views on euthanasia and assisted suicide as far as I remember.

I live in the Netherlands, the world’s first country to legalize euthanasia. Just days ago, I wrote on my Dutch blog about a book about a GP’s daily practice, in which he openly discusses euthanasia. I also read this book a few years ago that exclusively diiscusses a GP’s take on this topic. The subtitle of the book calls this GP an “euthanasia physician”.

Unlike Peace, I am not principly opposed to euthanasia or assisted suicide. I do realize there are people who are not pressured at all to kill themselves but want to die anyway. This includes people with a diagnosed medical condition as well as people who are “suffering life”.

I do, however, recognize the explicit and implicit discrimination in euthanasia-related law and ethics. People with terminal cancer can be euthanized if they so desire without much further ado. Infants with severe birth defects can be euthanized shortly after birth if the parents want this. However, a case where a doctor assisted in the suicide of a person who was “suffering life”, led to criminal charges.

The law in the Netherlands says, among other things, that a person must experience unbearable and hopeless suffering to be considered eligible for euthanasia. It isn’t stated that this suffering should be because of a diangosed medical condition. However, “suffering” is such a subjective, vague concept. Everyone suffers sometimes. In a society that is dominated by currently non-disabled people, however, it is a common assumption that people with disabilities suffer more than those without them.

As I said, I for one do not principly oppose euthanasia. It’s a much better, less painful way to end your life than conventional suciide methods. I do not say I advocate suicide – it’s a very sad, tragic thing. I also do feel that people who are suicidal need to be helped in every way possible to overcome these feelings. The thing is, we cannot fully prevent suicide.

What I do oppose is doctors suggesting euthanasia. About ten years ago, there was a case of a child born with severe spina bifida whose doctor suggested euthanizing the child. The doctor happened to be my former neonatologist, the one who said in 1986 that they were just keeping me alive and not to interfere, and who said in 2004 that he wonders about some preemies what the heck he’s done keeping them alive. The parents, like Heather Kiln Lanier and her husband (linked to in Peace’s article), believed the doctor was pushing them to consent to euthanasia, which led to a formal complaint. The doctor defended himself in the media, saying it was “just a suggestion”. Well, I do understand doctros have some say in euthanasia because they have to provide the means, but I think they only should be countering patients’ wishes when they do not want to euthanize them. Research on preemies, after all, shows that doctors are more opposed to aggressive treatments and want fewer preemies to be allowed to live than parents.

Speaking of parents, I mean no offense to Heather Kiln Lanier, but parents should not have the right to decide to have their children euthanized. As I said, newborns in the Netherlands can be euthanized under the so-called Groningen Protocol. Babies and children under twelve cannot, or maybe now they can, because the last time I checked on this topic was about a year ago. In any case, doctors are advocating allowing euthanasia on children under twelve with parental consent. You could say that a newborn does not have anything to want as they don’t have self-awareness (this is philosopher Peter Singer’s argument for infanticide). You could not say the same of a child. They may not have the cognitive ability to make informed decisions on medical treatment, but the darn well know when their parents want to have them killed.

I am almost anti-parent when it comes to this. Thankfully, parents like Kiln Lanier allow me to see how much some parents can fight for their children’s right to a fullfilling life with as little discrimination against them as possible. Kiln Lanier definitely respects her daughter’s right to self-determination.

My view on euthanasia basically comes down to this: no-one can decide for another person that they suffer so much that they should be “allowed” to die. Doctors only have the means to providde euthanasia, so they should be allowed to refuse to do it when a patient asks for it. However, they should never suggest a person be euthanized.

This does mean that children and people with cognitive impairmetns usually won’t be able to get euthanized. So be it. I’d rather keep a few people alive against their will than risk killing people who don’t want it. And just for your information, peoople with even the most severe cognitive impairments do have self-awareness, so sod your Singerian arguments there.

Fitness: Goal Setting and Getting Started #MDFitClub

Over at Mums’ Days, Hannah has launched the #MDFitClub. She writes all about motherhood and how it affects your health and fitness, but I believe I can join in too. After all, I have some health goals to work on too.

Back in January, I resolved to lose five to ten kilograms in 2015. That doesn’t seem to be a clear enough goal, because I keep thinking I could lose it all “later”. Though I’ve lost about two kilograms, that’s not nearly enough given how far along we are in 2015. My BMI is still over 30. Since the #MDFitClub runs for two months, I am resolving to get my BMI under 30 within these two months. That means losing about three kilograms.

Early this month, my fitness goal was to practise yoga at least three times a week. I have changed that to working out on the elliptical trainer or stationary bike, because these are more effective. I also started physical therapy last week, which is mainly for improving my physical condition. I did some working out there too, but I still agreed with the therapist to work out three times a week.

In the eating department, I’m doing relatively okay already. I have not completely eliminated binge eating, but have gotten it down to at most once a week. I do snack a lot though. I believe I shouldn’t be stressing out over the binges, since stress will make them worse. Then again, I do believe I need to stop snacking regularly. Otherwise, I won’t be losing any weight.

My purpose – my reason for wanting to achieve these goals – is my overall health. Though there is debate as to whether a BMI between 25 and 30 is unhealthy, everyone agrees that a BMI over 30 is. Besides, if I allow myself to have this BMI, there’s no clear-cut limit to weight gain. I really ultimately need to get my BMI under 25 (which means losing another twelve kilograms), but I know that’s not realistic within two months.

As a means of accountability, I will be writing regularly on how I’m doing with my goals. I am glad there’s a community of people participating in this challenge too. But I shouldn’t just talk, I should do the thing too. Now I’m therefore going to get onto that elliptical trainer. 🙂

What I Like About Myself

One of the June prompts over at The SITS Girls asks about a favorite thing about yourself. My husband occasionally jokes that my being a blogger makes me slightly narcissistic, so I’m going to exploit this prompt and list not just one thing I like about myself, but several.

I am going to start with physical features. Beauty is on the inside, but it’s good if you have something you like about your appearance too. I used to hate my body. Now most features are mostly neutral to me. I know I’m quite overweight, and I dislike that, but I don’t hate it. That’s a good thing.

Two features I like about myself are my hair and my eyes. I particularly like my hair since I had it cut and it’s somewhat wavy again. I don’t like short hair, never did. In fact, my mother used to push me about getting my hair cut short when I was young. I didn’t give in. Currently, I have my hair to about shoulder length. My hair is dark brown, although my father keeps calling it dark blond.

My eyes are a kind of greenish blue I’m told. I was never able to see my own eye color, but from my concept of color, I like this. I had a huge cataract removed from my left eye in 2013. Though the surgery wasn’t a success in terms of regained vision, the doctor commented that it did lead to aesthetic improvement.

Now that I think on it, I realize the features that I like are both features that my parents have made negative comments on. The hair wars were in fact much worse than the few words I used above can describe. Regardign my eyes, when I went to the eye doctor for an unrelated reason in 2004, shortly after the cataract had been discovered, my father asked the doctor whether aesthetics could be a reason to get the cataract removed.

With regard to personality features, I don’t like the one aspect my parents are over the top proud of: my intelligence. Conversely, I consider myself quite imaginative and creative, though I know that most people don’t share this opinion. Lastly, I like my determination, and again it’s a trait that most people say I don’t possess. That’s quite interesting.

Terrible Things Mental Health Professionals Say

Heather Clark over at Raising Rebel Souls listed some horrible things “autism professionals” say. This made me think. Professionals can be terribly ignorant about autism. I have only dealt with a few people who claimed to be autism specialists, but I have to agree even they can made insensitive or ignorant comments. Those who don’t know much about autism but claim to know enough to diagnose and support autistics, are actually the worst.

Having an additional diagnosis of borderline personality disorder doesn’t make it any easier. I met a person with BPD when I was admitted to the locked acute ward in the big city in 2007. She was forcibly discharged then readmited or threatened with forced discharge many times because, according to her treatment team, borderlines develop institutionalization behaviors if they’re admitted long-term. Quite truthfully, I am the only person diagnosed with BPD on my unit and I don’t know anyone who hasn’t developed institutionalization behaviors, most worse than mine.

It’s quite common for mental health professionals to clash with “difficult” patients on the right approach to care, and I for one am a “difficult” patient. I don’t care. I may not always make decisions or exhibit behavior that is seen as “normal”, but that doesn’t mean that professionals can look into my head and determine why I do the things I do and what consequence will truly help me. We’ve left the days of pure behaviorism and most people would consider it dehumanizing if it were applied to them. Psychiatric patients are no exception. Here, I will list a few things that professionals say about or to me that are quite frankly terrible.

1. “You have a personality disorder so you need to take responsibility for yourself.” Everyone needs to take responsibility for themself insofar as they can. That’s nothing to do with one’s diagnosis. I am told that people with schizophrenia need to be treated more directively. For instance, if I had had this diagnosis, I would’ve been asked to come back and possibly gotten my privileges taken away if I ran off the ward. Now, I’m “allowed” to wander for hours. I don’t see how my behavior is any less dangerous now that I have a diagnosis of BPD than if I had been diagnosed with schizophrenia.

2. “You are an adult (with BPD), you should be able to remember to take care of your personal hygiene.” Well, the fact that I’m an adult says nothing about my memory – which is often better in children than adults. Forgetting to take care of one’s personal hygiene may not be common in BPD, but it freaking well is common in autism. Besides, whether it is comon in people with my diagnosis, doesn’t change my abilities. My profile of abilities and difficulties should lead to a diagnosis, not vice versa.

3. “You can hold down a conversation, so you aren’t autistic.” They never realize how one-sided the conversations are, because that’s normal for a professional-client conversation. Besides, not being able to hold a conversation is but one criterion of autistic disorder and isn’t even in the criteria for Asperger’s.

4. “You are so verbally capable.” I am, sometimes. Then again, when I am not, this is seen as deliberate manipulation and I’m left without help to “think on it”.

5. “Do you want some PRN medication?” Then when I answer “Okay”, they say: “So you did know what you wanted.” No, I didn’t, or if I did, I couldn’t communicate it. Saying “Okay” to a suggestion is a lot easier than coming up with said suggestion myself.

6. “You have theory of mind. After all, you apologize when you did something wrong.” Correction: I apologize when I think I did something wrong. I apologize way more often than is truly needed and quite often don’t apologize when I don’t realize I did something wrong. That is then seen as deliberate rudeness.

These are generally comments made to me, taking into account my diagnoses. I won’t say that people with schizophrenia or bipolar disorder don’t get nasty comments thrown their way. I just can’t speak for them.

There are also comments that makke it sound as though the staff are generally uncaring. For example, one nurse often says: “Nurses are too expensive to do cleaning.” True, we need to be encouraged to clean up after dinner or coffee, but it has nothing to do with nurses’ salary.

Post Comment Love

On My Summer Reading List

As a child, I hated reading. I was required to read at school and sometimes at home, but at least during summer vacation, the reading required by my teachers was gone for a few months. I wasn’t one to join summer reading clubs and maybe finished my library’s reading program – five books in three months or so – once.

It was, however, during the summer of 2000 that my love for reading took off. I discovered Caja Cazemier, a Dutch juvenile fiction writer, and read many of her books during the next two years. Since I went to a high level high school, however, we were required to read real adult literature from ninth grade on. I hated it! Still in all honesty, I’ve not read many works of adult fiction. Give me non-fiction, memoris and juvenile fiction instead.

I didn’t read much during the years following my high school graduation in 2005. Few books at least – I obviously did read blogs and magazines. In 2014, however, I rediscovered a love of reading when I learned how to work eBooks. This summer, I’m going to really make time for reading.

Since summer reading is the topic on the Spin Cycle this week, I browsed Kobo for a few books I want to read. Here goes.

1. Tressa – The 12-Year-Old Mum: My True Story by Tressa Middleton and Katy Weitz. I admit it, I love inspirational books about people who overcame adversity. Some people see this as bad, and I understand why, but well, yeah. Tressa Middleton became Britain’s youngest mother in 2006 at the age of twelve. The truth is she was raped and made pregnant by her brother, but she hid this truth for years. This must have been an awful experience, but, according to the cover, Tressa overcame this trauma. I just found this book today and really look forward to reading Tressa’s true story.

2. Beyond Magenta by Susan Kuklin. Since finally favoring my own opinions over others’, I can now admit I support transgender people and their rights. On the blog I kept in like 2010, I often used to call out transphobia and homophobia, but this has gone on the backburner since I wanted to belong with the Christian community. Being cisgender and straight, privilege affords me this luxury. Beyond Magenta is a book of stories from transgender teens. It was published in early 2014 and I’ve wanted to read it ever since. I can’t promise it won’t have any inspirational qualities to me, but I mostly like to educate myself about trans people’s lives. (Of course, if you’ve read about one trans person, you’ve read about one trans person.) I won’t be able to see the photographs the cover mentions, so I hope I won’t be missing out on them.

3. The Beauty Myth by Naomi Wolf. This book is the June 2015 non-fiction read in the F-Word community on GoodReads. In this book, Wolf exposes the hidden body negativity and sexism of modern beauty ideals and the beauty industry. As a fat person who doesn’t conform to beauty norms (eg. I don’t usually wear make-u), I look forward to reading what Wolf has to say.

What will you be reading this summer? Any other recommendations for on my reading list?

Healing Quotes: Looking Fear in the Face

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

We are often afraid of what the future might hold. At least I am. Today, I don’t feel like taking the leap and preparing for living with my husband at all. I’d rather choose stability, even though ultimately, standing still means going backwards in life.

When I look back at my life, I often tend to look at my life experiences with a level of sadness or anger. How much more will life hand me, if I’ve already been through this?

Another way of looking at it is, I’ve been through it and survived. This means I am strong. If I’ve been able to handle what I have, why won’t I be able to handle the next hurdle in life?

Another thing is, of course, that uncertainty is scary, but without taking risks, we won’t go forward, and without going forward, we slide backward. I believe I read it in this book I mentioned of poems by a rape survivor, but not sure. Wherever I read it, I read that there are generally two kinds of people in life: those who warn you about all the risks of following your dreams, and those who encourage you to take the chances that following your dreams will present you with.

I have generally been trying to stay on the safe side, not taking risks but thereby not taking chances either. A few of the chances and risks I took, have not turned out well. For example, I went to university in 2007 and fell flat on my face. Then again, does that mean that taking chances and risks is altogether bad?

I took the chance and the risk of transferring from the city institution to my current small town institution. It hasn’t been an altogether good choice, but opportunities have arosen from my taking this chance/risk too. For example, day activities are generally better here than in the city institution.

I tend to choose stability over opportunity, but maybe that needs to change a bit. I’ve gone through a lot already and survived, so doesn’t this indicate that I am strong enough to handle the future?

Gratitude List: Week Starting June 1, 2015

Gratitude lists are a great way to look at the positives in your life. I love reading them. Though I’ve done a few positivity lists, I never called them gratitude lists. They are pretty mucht he same, but I love the word “gratitude”. Here goes my gratitude/positivity list for the week starting June 1, 2015.


  1. Lots of new blog engagement. I was quite satisfied with my blog posts this week, so decided to promote them. I received quite a few comments and got many new visitors. Thanks all!

  2. Been very much inspired to write. Today is an exception, but thinking of things to be grateful for takes inspiration too.

  3. Been very motivated to reach my June goals. For example, I’ve been learning a few new yoga poses.

  4. Finally discontinued my harsh spam filter on my E-mail, which was blocking a lot of legit E-mail with no way to change it. The amount of spam did increase, but not too badly, and I did finally receive GoodReads E-mails. These have been very inspiring.

  5. Speaking of GoodReads, I’ve joined a few interesting groups. I hadn’t taken part on GoodReads in years, but now am very much inspired to join some reading circles.

  6. Finally started reading Unspeakable by Abbie Rushton, which came out in Ffebruary and which I bought right then but never got round to reading. It’s a great book so far.

  7. The weather was beautiful today and yesterday. Today, it was quite hot (like, around 30_C) and right now, there’s a thunderstorm going over my town. I loved sitting in the garden this afternoon and I also for some reason love the sound of the thunderstorm.

  8. I bought some nice new skirts on Monday and wore one of them today.

  9. Went to the bakery stand this morning. They always have a stand right outside of the institution on Friday mornings. Bought croissants and oh, they’re so delicious!

  10. Had my hair cut yesterday. It’s quite a bit shorter now and I must say I like it better this way.

  11. Heard from the autism center consultant today. She had contacted several autism support agencies and one of them did say they can possibly guide me in my wish to live with my husband and investigate what I’ll need.

  12. I had a meeting with a woman from another unit at my institution who wants to volunteer for a blind person. She had tried to volunteer at the local blindneess institution but ran into bureaucratic issues there, so it was suggested that she volunteer for me. I think I liked meeting with her. She’ll come round to my unit on Wednesday to see if she can read me the institution newsletter or something else or we can go for a walk.

Overall, today I’m in an okay mood. I did worry a lot about the autism center recommendations and the possibility of me moving in with my husband last night. Today, I am relatively able to let go of these worries.

Linking up with Reasons to Be Cheerful.

#DearSoandSo: Psychological Evaluations

Dear evaluating psychologist,

You don’t know me yet. Soon, you’ll know me as the blind, autistic person who was born prematurely. Then, you’ll hopefully get to now me as Astrid. I was referred to you by the autism center’s consultation team for neuropsychological and intelligence testing.

You need to know that I am a survivor of psychological trauma. I won’t disclose any details, but it’s important that you know that psychological evaluations are a big trigger for me. They are very intimidating. As a result, I might dissociate and put on a mask, which might influence my performance.

I ddon’t know how exactly to prevent myself from dissociating or putting on a mask. I also don’t know for sure what you can do to help me. However, I would suggest you refrain from making assumptions about my performance prior to or during testing. I will try to remember that I’m still me with my abilities and difficulties, regardless of the outcome of testing. However, this is hard to remember.

I hope that the testing experience will be as stress-free as possibe. Thank you for any help you may be able to provide.

Kind regards,

Astrid

I went to the country’s top notch autism center, which happens to be in my town, yesterday. They thankfully believe I’m on the spectrum and don’t see a need to re-evaluate me. They however recommended intelligence and neuropsychologcal testing to find out why I function at a much lower level than my verbal ability would suggest.

They also recommended a sensory processing evaluation. I have suspected I have sensory processing issues for a long while, but now that I think on it, I may ask specifically about auditory processing. I used to be seen as an auditory learner (probably because my tactile skills were worse), but I still have a lot of difficulty understanding speech when there’s background noise. I also tend to process speech with some delay it seems. For example, I’ll say “What?” and then realize I did hear what was being said. Some people in the sensory processing disorder community said that auditory procesisng is different from sensory integration, so I’ll have to ask specifically about this.

Lastly, they recommended a support worker come to visit me at home and in the institution to establish my independence and support needs. Then, they could help me develop greater independence skills.

Dear So and So at Mummy from the Heart

Not My Mother’s Daughter: How I’d Parent My Hypothetical Child

One of this week’s writing prompts from Mama’s Losin’ It asks how you parent your kids differently than your own parents parented you. Now I don’t have any kids, and if I did, I wouldn’t get my way on every parenting decision. After all, my husband would’ve been there too, and, the way he views parenting, he’d be the stricter one of us.

I imagne, if I have to be very honest, that my hypothetical child’s upbringing would be similar to my own. I don’t approve of many of my parents’ actions, but then again they were done out of powerlessness. I imagine, agian being very honest, that I’d be quite permissive to my child but would lose it eventually and become aggressive. This is one reason I won’t have any kids.

Ideally, if I had a child, I’d parent them as naturally as possible. I don’t mean eating all organic food and using cloth diapers, as I don’t believe in this. I mean guiding them through their natural development rather than teaching or training them. For instance, I have some strong opinions on toilet training, which some parents take very seriously. I of course know that the skill of using the toilet is important, but I also think that too much pressure will stress the child out. Having witnessed some incontinent adults being humiliated and pressured, I know I don’t want to subject my child to the same unless it’s absolutely necessary. I originally wrote a lengthy, TMI’ish monologue on toilet training and how I would and wouldn’t approach it, but I’ll leave you to read up on natural toilet learning to find out.

My husband and I have had discussions or debates about what education we’d want for our child. I am a traditonally-educated person and went to an academically challenging high school. My husband has had a less traditional route in his education, though he finally earned a high school diploma at the same level I did. Both of us would choose an education for our child that is different from our own, even though we agree that our child would never go to the posh type of high school I went to. I think if it’d come down to it, I’d want a challenging education for my child too, but my heart screams “No!” to pushing my child’s academic limits.

Now that I think on it, my heart screams “No!” at the idea of pushing my child’s limits in general. This may be one more reason why I’d make a bad parent, though I’m not sure. After all, pushing a child over their limits is different from feeding the fire of their curiosity (be it for academics or otherwise). I don’t know whether this is optimism about a child’s natural curiosity and capacity for learning. It could quite likely be fear of overburdening my child like I was overburdened.

Mama’s Losin’ It