The One I Love: My Husband #Blogtober20

Posted on by Astrid

Welcome to day two in #Blogtober20. I realize that when I wrote about myself yesterday, I never mentioned the fact that I’m married. Thankfully, the second prompt in the series is “The One I Love”, so now is my opportunity to talk all about my husband.

I met my partner on an Internet forum in 2007. Neither of us were looking for a relationship. I wrote on the forum that I was bored and lonely living on my own in student accommodation in the city of Nijmegen, Netherlands. He went to school in Nijmegen at the time. He was also looking to expand his social circle, so he PM’d me asking if we could drink a cup of coffee or tea in Nijmegen somewhere. We met at the bus stop near the university’s dentistry department, because that was the only bus stop near the uni that my bus would stop by. We went for a coffee or tea at the uni’s cafe. I was so nervous that I tumbled off a step and dropped my coffee.

Thankfully though, my now partner didn’t mind. Though he had been nervous too and had mixed feelings about our first time meeting, he did want to meet again. I invited him to my student apartment, just because I had no clue where else to meet. That could’ve been really stupid, but thankfully it turned out well.

Six weeks after first meeting my now partner, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have his phone number, so asked my staff to log onto the forum and send him a message. The staff didn’t include my phone number, because I hadn’t requested it.

Several weeks later, my father called to ask whether he could give my number to my now partner. It turned out that my now spouse had found my father’s E-mail address by googling the whois info for his website. I am so grateful my father didn’t have privacy protection on, as I do with my websites.

It certainly wasn’t love at first sight (oh, that sounds stupid for a blind person) for me. On the contrary, when my now partner told me he was in love with me, I let him wait four months before reciprocating it. Similarly, when he proposed to me in June of 2010, I replied: “So do you think that’d be cool then?” He did really want to marry me and we had our wedding date on September 19, 2011, exactly four years after we’d first met.

My spouse and I don’t live together. Like I said, he fell in love with me while I was hospitalized. This hospitalization lasted 9 1/2 years, after which I was kicked out to live with my partner. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

My partner is 31-years-old (32 next month). He sometimes jokes about my having married a younger man, as I am 34. I am glad he isn’t significantly younger than me though, as, when I was hospitalized on the locked unit, I wasn’t to leave the ward unless with someone 18 or over. We loved going to the hospital cafeteria to have tea or hot cocoa. We also loved playing cards.

My spouse and I have the same sense of humor. We love wordplay and have our own phrases and terms for communicating certain things. For example, when we get bored of each other, we say “banana spider”. He is also really inventive with new nicknames for me. I, not so much.

I really love my spouse and want to be married for the rest of our life. Not living together has its ups and downs. Particularly in these times of corona, we’ve had to be separated more than we’d like to. Thankfully, our love has survived.

#Blogtober20

This Is Me: Beyond the Labels #Blogtober20

Posted on by Astrid

A few days ago, I discovered Blogtober, a month-long event aimed at bloggers writing a post everyday during the month. There are prompts for each day of the month. They’re based on song titles, but you can do whatever you want. You don’t even have to follow the prompts! The first prompt is “This Is Me”.

So, who am I? When introducing myself, I tend to focus heavily on my labels. I tend to say that I’m blind and autistic and that I have mild cerebral palsy. I tend to say that I live in a care facility. I tend to say that I don’t work, but do day activities at my facility. Then again, are these the things that define me?

I could also be focusing on my passions. I am a blogger. I love to read memoirs and young adult fiction. I love to make soap and other bath and body care products. I am interested in aromatherapy. I am passionate about mental health and disability rights.

These are more “me” than my disabilities, but they’re still labels. Who I am at the core is not a blind or autistic person, or a blogger even.

Still, it is hard to define myself beyond the labels. Here are, however, a few things I think make me me.


  • I am open to new experiences. For example, I love to discover new hobbies. I am also open-minded to differences in people’s identity.

  • I am passionate. When I have an idea in mind, I can truly focus on it for a while. This means I can really be enthusiastic, but it also means I tend to perseverate.

  • I am sensitive, both to emotions and to physical stimuli. This may or may not be a positive characteristic, depending on how much I can handle on a given day.

  • I am intelligent. This is often the first positive quality people mention about me and I tend to hate that. After all, my IQ was often used to show that I should be able to solve my problems in other areas. Now that I am in an environment that doesn’t judge people by their IQ – I live with people with severe to profound intellectual disability -, I tend to appreciate my intelligence somewhat more.

  • I am a go-getter. Some people would disagree, because I have very poor distress tolerance and because I haven’t achieved their goals for me. They see the fact that I’m in a care facility and not working as a sign that I’ve given up. I haven’t. I have just focused on my own true needs and desires.

What are some things that make you uniquely you?

#Blogtober20

Weird Dreams

Posted on by Astrid

It’s already Thursday here, so I’m technically a day late to join in on Fandango’s Provocative Question. I’ve never joined in on this meme before, but I really liked this week’s question. It is to share the strangest, weirdest dream you can remember.

I already shared about the dream that got me to quit putting sugar in my coffee some months ago. That wasn’t as weird a dream, considering that refined sugar is by some people considered pure poison indeed.

Another weird dream that had an impact on my later life is one I had when I was about seven-years-old. I dreamt that there was a big soccer match between Ajax and Feijenoord, the two main rivaling clubs in the Netherlands and the only ones I’d heard of at the time. I apparently was an Ajax fan and they won. So far, nothing weird, except that I knew nothing about soccer and certainly wasn’t a fan of any club. The weird bit comes now: someone gave me some pills that made me cry, so that everyone would think I was sad and hence supported the “right” club.

As a side note, I lived in Rotterdam at the time, so indeed Feijenoord would’ve been the club to support. I became a wannabe Ajax fan as soon as I learned anything about soccer at all, as my friends at the school for the blind were Ajax fans. This was probably after our move to Apeldoorn though.

Like I said, the dream had an impact on my later life. Indeed, when I went to the school for the blind at age nine, I got a phys ed teacher who looked a lot like the man who’d given me those pills in my dream. I took an instant dislike to him and even though I knew why, I couldn’t help it. He was a pretty strict teacher, so I may’ve disliked him anyway.

What was one of the weirdest dreams you can remember?

Home Sweet Home

Posted on by Astrid

This week, Eugi’s weekly prompt is “Home sweet home”. I’ve never participated in this prompt before, but I thought I’d now.

Two weeks from now, I’ll be living in the care facility one year. It feels closer to home than any of the homes and facilities I’ve lived in before did. That feels weird. My parents’ house felt like home, but that’s just because I knew nothing else. My parents felt as safe as possible, but again that was because I knew nothing else.

Then I went into the training home. That was temporary, as you were supposed to live there for at most two years while training for independent living. That’s what I did eighteen months later. I cried my eyes out the first day, in front of my mother, who got angry with me.

It felt horrible to know that this was it forever. I mean, for at least the duration of my university studies, so four years, I’d live there. Then I’d live in a rented house on my own. It completely overwhelmed me.

As regular readers know, it didn’t last. Three months in, I landed in a mental crisis and was hospitalized. Though I stayed in the psych hospital for 9 1/2 years total and for over four years on one ward, it never felt like home. I knew it was temporary, after all.

And then I got kicked out. I lived with my husband in our rented house in the tiny village for 2 1/2 years. Even though I got by okay, it never felt good.

And now I’m here. I got that overwhelming feeling that this is it forever in the first weeks too, but this time, it was good.

I struggle to believe that this is not yet another temporary living arrangement or one in which I cannot cope. I act in and out a lot, probably to somehow “prove” that I’m not suited to this home. That I’m not suited to any home in the world. That there is no home sweet home for me.

Yet my staff so far say that I can stay here for the rest of my life. That, too, feels kind of overwhelming, but like I said, in a good way.

I also of course have my and my husband’s home in Lobith. That one still feels a bit odd to me. I never really lived in it, since we bought it two days after I moved into the care facility. In fact, I struggle to consider it my house too. When I write about it, I often write that it’s my husband’s house, then correct myself and add “and my”. I want to keep a connection to that house too, but it doesn’t feel like home.

COVID-19 Reality Check: It’s Still Not Over

Posted on by Astrid

So like I said earlier today, I had a low-grade fever yesterday. I didn’t think much of it. I guess the reality that COVID-19 is far from over yet, hasn’t hit home yet. My husband was immediately worried. I may’ve worried him too much by my wording. I mean, there’s a word for a low-grade fever that I should have used, but I said I had a slight fever instead.

I asked my husband whether he could come tomorrow, now that I no longer have a fever. He said no way and got a little annoyed with me for even raising the issue again. He said if I do have COVID-19 and infect him and then his father, my father-in-law could die. Or if I do develop symptoms again when at my husband’s and my house in Lobith, I won’t be allowed to come back to the care facility. I understand, but it’s hard.

At the beginning of the COVID-19 pandemic having hit the Netherlands, I was somewhat optimistic about its progress. I mean, I predicted that, by September 2020, vacations would still be discouraged but the virus would pretty much have left anyway. It hasn’t.

Then in mid-May, life more or less went back to normal within the care facility for me. At the end of June, the restrictions on visitors were practically lifted altogether. I mean, I’m supposed to call the facility after having been in Lobith to make sure I’m still symptom-free and so is the care home, but I don’t.

In early August, my mother-in-law came by and we went to sit outside of a restaurant for a cup of coffee. No-one asked for our contact details or checked that we met the 1.5m distance requirement. I later heard the rules were made stricter again at the end of that week, but I still am not seeing much of a difference.

My care facility went mostly back to normal over the summer. I mean, the home a floor below me got infected with COVID-19 in late March. After that, staff were not allowed to work on multiple units and the night staff were to keep their distance as much as possible. After all other homes stayed clear, staff are now allowed to work on multiple units again, even in the same day. Staff, except for the night staff, never stopped hugging clients or holding their hand. Some staff wear face masks some of the time. Most don’t.

My husband commented earlier this evening on terraces being packed full of people in Elten, Lobith’s neighboring town across the German border. He sarcasttically wondered whether they had the vaccine already. They don’t.

My husband is scared. He may be more cautious than most, or at least than me. That’s a good thing though. He wants to protect himself and his loved ones. I understand.

Meanwhile, I want to go back to normal – the old normal. I saw a writing prompts book on coronavirus today in Apple books and decided to get it, even though in my mind, COVID-19 was in March, not September. Yet it is.

Mama’s Losin’ It

PoCoLo

#IWSG: Choose One Author

Posted on by Astrid

IWSG

It’s the first Wednesday of the month again. Oh my, can you believe we’re already two-thirds through 2020? I can’t. In any case, the first Wednesday of the month is the #IWSG posting day.

I haven’t been doing as well as I’d hoped in the writing department over the month of August. Yes, I did post to this blog several times a week each week. I remember my husband at one point, when I was in the mental hospital and particularly lethargic, encouraged me to write one blog post each week. It’s been forever since I last struggled with that, but still, I want more.

I saw a few weeks ago that Chicken Soup for the Soul have a book coming out about tough times because of the COVID-19 lockdown. I thought of submitting a story about my husband’s and my forced lack of seeing each other for the first three months of quarantine. Still, I feel pretty insecure and fear rejection. I know, as a writer, rejection is part of the business and if you don’t try, you won’t succeed at all. I however struggle not to take rejection personally. I know that Chicken Soup just won’t notify you if you’ve been rejected, but still. The deadline is October 31, so I still have time.

Now on to the optional question. This month’s question is: if you could choose one author, living or dead, to be your beta partner, who would it be and why? This is a little hard, as I’m not a book writer, so really I’d have to go with someone to critique my blog. I would however still really like to at least write and hopefully (self-)publish my memoir. For this reason, I’m choosing foster care memoirist Cathy Glass. She wouldn’t really be my beta partner – more my writing mentor. Although I must say I’d love to beta read her memoirs too.

In addition to memoirs, she also writes thrillers under the name of Lisa Stone. I’d really love her to teach me how to write fiction.

How about you? Would you like an author to be your writing mentor or beta partner?

Advice to Today’s High Schoolers

Posted on by Astrid

This week, one of the prompts over at Mama’s Losin’ It is to share advice you’d give today’s high school students. I cringed a lot at Mama Kat’s own post, as it was based on the idea that all high schoolers have parents who have their best interest in mind. I mean, I lied regularly as a teen. Though I wouldn’t advocate for that, it was all I could, because honesty led to harsh punishment.

I am not sure how much of my experiences was shaped by my neurotype, ie. being autistic. I mean, the main reasons I was ridiculed and punished harshly were because I was “weird”. However, there are lots of high schoolers who for whatever reason cannot follow Mama Kat’s advice, either because of their own situation or because of their parents.

For this reason, the main piece of advice I would give any high schooler is that it’s okay to be themselves no matter what. Whether your parents accept you, is something about them, not you. Do stand up for yourself if they are abusive or hurtful. You may be a minor, but that doesn’t mean your parents are all-powerful and all-knowing (especially that).

Also, seek out adult role models other than your parents. I felt helped a lot by being in contact with disabled adults. Even for neurotypical, non-disabled teens, it is useful to have people that inspire them other than their own parents.

Use social media, but of course use it wisely. There are spaces on social media for people just like you. Of course, I know most parents supervise their teens’ social media use and I think there is some good reason for that. Mine thankfully didn’t, but then again I was pretty careful not to engage in unsafe behavior online.

I do agree with Mama Kat that honesty is part of a good family dynamic. It has to come both ways though. As teens, it will help you to not give your parents reasons to snoop on your private life by being open about it. If your parents aren’t safe, seek out another adult to talk to.

What advice would you give current high school students?

Mama’s Losin’ It

A Time I Decided to Speak Up for Myself

Posted on by Astrid

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

My Daily Routine (Or Lack Thereof)

Posted on by Astrid

And still it’s incredibly hot here! It did start to rain last night, but it’s not cooled down much in my room. It’s already past 9PM here and I don’t feel like writing. Or doing anything else. But I bet I cannot sleep either. Therefore, I blog.

Today’s #FDDA prompt is “your daily routine”. My daily what, I ask?

Unlike many other autistics, I am not one for clear routines. In the mental hospital, I would just lie around and do whatever, just like I see many people do now during the COVID-19 lockdown. I didn’t have a set time I’d go to bed or get up. I didn’t have a daily personal hygiene routine, as I hated most personal care tasks and there was no-one to say I needed to do them. Well, there was the staff, of course, but it was their view that I was responsible enough to decide these things for myself.

Once I lived with my husband, I did go to a day center each weekday morning. This meant I did have to get up at the same time each day. I did have an okay morning routine back then, as my husband had instilled the importance of personal care into me.

Then I went into long-term care. Pre-COVID, I still had somewhat of a routine, as I was expected to go to the day center each weekday (except for every other Friday). I tried to maintain such a routine when the day center closed, but I cannot seem to really.

Still, I have some set activities I do each day. I go for a walk in the morning and one in the afternoon too. We also have coffee, lunch and dinner at the same time each day. Now that it’s hot though, I don’t go for walks and often skip coffee break too.

These last few weeks, the days have truly been merging into each other like time didn’t really matter. I do still try to blog most days, usually around the same time.

Sometimes, I wish I had more of a strict daily routine. That’s not really possible though and I’m not sure it’s really what would be best for me.

What about you? Do you thrive on routine?

If I Could Have Any Pet

Posted on by Astrid

Today’s topic for Fandango’s Dog Days of August (#FDDA) is “pet”. One of the suggested topics is to talk about which animal you’d have if you could have any pet. I am going to use this topic as a starter for today’s blog entry.

As regular readers of my blog might know, my husband and I have a cat. We first got a cat, Harry, when we were first planning on living together in 2013. We’ve had Harry since kittenhood. However, he was pretty hyperactive, so we got Barry, thinking the two might make great playmates. Well, they didn’t, so we ultimately rehomed Harry. Now we still have Barry.

I always grew up with cats. The thing with them though is, they invariably seem to sense my inadequacy. Whether this is due to my blindness, I don’t know.

Regardless, cats aren’t quite as confortable with me as I’d like them to be. I still hope I will someday have a cat that will have a true liking for me, but that’s not in cats’ nature, I’m afraid. They’re more introverted than some other animals. Or maybe that’s just been the cats I’ve had so far.

All that to say that, if I could have any pet I wanted, I would like a dog. However, I’d for sure like it to be a psychiatric service dog as well as a trained guide dog. That seems a bit much, maybe, but I know some blind people whose guide dogs also help them with their mental health issues.

I may also want to have a pet rabbit or guinea pig. Rabbits generally need a lot of space, though my sister-in-law keeps three (if I’m correct) in her house. She does have a garden, so I hope they’re able to roam about there at times too.

In general though, I don’t think I’m that much of a pet person. I fed Barry dutifully when I still lived with my husband, and though I did take delight in it, I wouldn’t say he’s like my child or something. I’d love to develop more of a connection to Barry and to whichever future pets I might have. I do care deeply about them, but I just don’t feel the natural attunement to my pets that others do. I can’t say it’s an autistic thing, as a common autism stereotype (thanks, Temple Grandin) is that we have a strong connection to animals. I guess I for one don’t.