What Recovery Means to Me

Yesterday, one of the daily word prompts here on WP was Recovery. I didn’t see it till it was already time for me to go to bed, so I’m writing about this word today. Today, I am sharing with you what recovery from my mental health conditions means to me.

First, there are a few things recovery doesn’t mean to me. Recovery isn’t the same as being happy all the time – that’d be an unrealistic goal. It also isn’t the same as independence. I don’t intend on ever living independently again and there are few things with respect to life skills I’d really still want to learn.

Recovery does mean no longer being scared when I’m able to do something independently. Currently, I constantly expect people to overestimate my abilities, so when I can do something independently, I think people will expect me to do it all the time.

Similarly, recovery means no longer being afraid of my feelings, both good and bad. Affect phobia is a thing, you know? I currently tend to dissociate from my feelings a lot. I also often counter joy or sadness with anger, because that’s the easiest emotion for me to express.

Recovery means having a relatively stable sense of self. I don’t necessarily want to integrate all alternate parts of my personality, although it’s okay if it happens spontaneously. We do want to achieve cooperation among ourselves. This also means being able to accept the seemingly opposite sides of me.

Recovery means, as a result of the above, no longer needing to rely on negative coping strategies such as self-harm, rage or impulsive behavior. I will no doubt still have times when I indulge into an unhealthy habit such as overeating or buying stuff I don’t need. That’s okay, since I don’t think total self-control is a realistic goal. I just don’t want to use these as coping skills when feeling overwhelmed, and I no longer want to engage in self-harm at all.

Lastly, recovery means no longer expecting people to abandon me if they know the real me. Currently, I have such a negative self-image that I believe any positive aspects of me are a façade and at the core I’m so wicked no-one should want to be associated with me. Overcoming this is probably the hardest thing to achieve, as expectation of abandonment is such an ingrained thought pattern. I really hope to someday stop seeing myself as one giant manipulator though.

In addition to the word prompt, I am linking up with #LifeThisWeek and #SeniSal.

Some Might Say: Judgments About Me #Blogtober20

Okay, I said I wasn’t going to take part in the #Blogtober20 prompts anymore, but this one did speak to me. Today’s prompt is “Some Might Say”. People can be incredibly judgmental. Today, I will write about some things people have said about me that indicate they are clueless or insensitive or both.

The first things people notice about me, are my blindness and the fact that I’m relatively well-spoken. This often leads people to assume that I either should be able to be independent or that I am obviously not because I’m blind.

My parents and other people who are relatively educated about blindness, often assume that I should be able to live independently and be employed. Even if they are fine with my “choice” of not pursuing a career, their idea of me is to live independently. Some people who don’t know me that well, ask whether my husband and I have or want kids. To me, it’s obvious that we don’t, but then again that may be internalized ableism. After all, I for one am not able to take care of kids, and besides I value my freedom. Others with my disabilities may definitely be able and willing to parent.

Another judgment I often get is that my marriage isn’t strong because we don’t live together. My last psychologist at the mental hospital even dared to say my marriage isn’t worth anything if I don’t intend on living with my husband. Well, when we got married in 2011, we had zero intention of living together. I was on the waiting list for a permanent workhome for autistic people. It is only because that didn’t work out, that my husband asked me whether I wanted to live with him. And just so you know, our reason for getting married is that we love each other and want to show each other that this is for life. And in my opinion, that’s the essence of marriage. Okay, I know that at least a third of marriages end in divorce, but I hope that if couples get married, they at least hope this is going to be for life.

Like I said, some people, particularly strangers who are clueless about disabilities, think that it’s perfectly understandable that as a blind person I live in a care facility. This misconception often feels as uncomfortable to me as the idea that I am or should be independent. I used to want to educate people that most people who are just blind, can live independently. I no longer do this though. Not only is it none of random strangers’ business that I’m not just blind, and isn’t it my obligation to educate, but I might also be adding to the stigma I fought so hard against as a teen.

By this I mean the National Federation of the Blind’s philosophy that blindness shouldn’t hold you back. It in fact used to say that the average blind person is just as capable as the average sighted person. That led to the idea that, unless you had severe or multiple other disabilities, you were to be pushed to achieve whether you could or wanted to or not. That just doesn’t work for me and it doesn’t work for many blind people.

#Blogtober20

What I Wanted to Be When I’d Grow Up #Blogtober20

Today’s prompt for #Blogtober20 is “Wannabe”. I originally had no idea what to write for it, until I saw Mandi’s own post mentioned writing about what she wanted to become when growing up. Mandi chose against this theme, but I’m going with it. I can’t remember whether I ever covered this topic on this blog – I’m pretty sure I did on one of my older blogs, but it might have been here too. Even if I did cover the topic here, I have a lot of new’ish readers, so it may still be interesting.

I remember in Kindergaten we had some type of celebration that included a “fortune-teller” with a crystal ball – of course, it was another grade’s teacher. I remember she asked us all what we wanted to be when we’d grow up. Most girls wanted to be a princess, of course. I can’t remember what I said I wanted to be.

When I learned to write, however, I knew pretty soon that I wanted to be a writer. My parents, realistic as they were, told me up front that writing wouldn’t earn me a living unless I was a real good one. So for money I usually wanted to be a teacher.

I originally wanted to teach small children, of course, because I myself was still young. When I got to the later elementary grades, I made up my mind and wanted to become a high school teacher. Or a professor even. I remember proudly telling people when I was twelve that later I wanted to be a Dutch-language linguist. Later, I wanted to become a mathematician.

This was, at least, what I told others when my parents or teachers were present. Secretly, I made plans to become a psychologist. I wanted to help children or adults with my kind of problems, which I was well aware of by that age.

When I was in my later years of high school, the thought of becoming a psychologist remained at the back of my mind. Openly though, I chose to go the “safe” path and applied to become an English major. Then I made up my mind at the last moment and chose to take a gap year to go to the rehabilitation center for the blind.

I got the opportunity to study psychology, albeit not at university, in 2006. I jumped at the opportunity and did eventually earn my foundation (first-year diploma) in applied psychology. I passed communication skills only if I promised that I wouldn’t continue in this field though. I know, psychology isn’t the best major for an autistic. But I didn’t want to do something I didn’t like, so I picked linguistics as my university major with the intent of doing my minor in speech and language pathology. As most of my readers know, it didn’t work out.

I still intend on someday taking some more psychology or pedagogy classes. I will most likely never work at any paid job though. Still, my original dream of becoming a writer, has at least partly come true.

#Blogtober20

If I Could Turn Back Time… #Blogtober20

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

#IWSG: I’m a Hobbyist Writer

IWSG

Welcome to another meeting day of the Insecure Writer’s Support Group (#IWSG). I wish I could share that I’ve been doing well in the writing department. Well, in some ways I have, but I still haven’t written the story I intended to write for Chicken Soup for the Soul. I’m not even sure I will, as somehow it seems so insignificant right now that we’re not in lockdown anymore and I can see my husband again. When I had the COVID scare a little over two weeks ago, I did want to write, but couldn’t find the motivation really.

That being said, in other ways I did pretty well writing-wise. I decided to join #Blogtober20 at the last moment. Of course, I couldn’t join earlier, as I didn’t know about the challenge until last week. So far, I’m doing well, writing a post each day. I’m not always sticking to the prompts, but that isn’t required.

On to the monthly optional question. The question is whether you consider yourself a working writer and, if so, what it means. Or if you consider yourself a hobbyist or aspiring writer, what that means to you.

I obviously am a hobbyist writer. I cannot even say that I’m an aspiring writer, because I haven’t submitted a piece in years. In fact, the only piece I ever submitted was the one accepted into the anthology on typed communication by autistics in 2015.

I did at one point list my blog as my place of employment on Facebook. Now I don’t, because I don’t want my family to read it. Not that they most likely will, and of course they can still find me if they truly want to.

Being a hobbyist writer doesn’t mean I don’t have goals. I mean, I participate in #Blogtober20 and the goal for that challenge is to write a blog post each day of the month. I also during the rest of the year have somewhat of a rule that I need to post at least twice each week. I don’t have set days to publish a post, but if I haven’t written anything for a few days, it tends to feel awkward.

Being a hobbyist writer also doesn’t mean I don’t care how my writing is doing. I got really excited when, last week, I got lots of comments on a few posts. I also feel disappointed when I get only one or two comments on a post. I love seeing my stats go well. I don’t use Google Analytics anymore, because I was struggling with it and didn’t want to pay the money for having it on my WordPress.com blog. However, my WordPress stats do mean something to me.

Sweet Child O’ Mine: My Inner Child Parts #Blogtober20

Welcome to another day! The next prompt in #Blogtober20 is “Sweet Child O’ Mine”. I don’t have children and never will. However, I do have inner child parts and am pretty childlike at times, for better or for worse.

As regular readers of my blog will know, I have some dissociative symptoms. Particularly, I experience identity confusion and identity alteration. The latter of those is more commonly known as having multiple personalities. They each have their own names and ages too.

For example, Milou is a cheerful eight-year-old. She loves to learn independence skills like cooking, where appropriate to her age, of course. She is also quite the adventurer.

Suzanne, on the other hand, is quite emotionally disturbed. She is seven-years-old and feels the burden of having to grow up too fast. She often regresses into an emotionally much younger state.

There are many young parts inside of my head. It goes too far to talk about them all here. I mean, it’d probably confuse all of you, as it does me sometimes (hence the identity confusion).

Also, of late, I’m not feeling them that much. Yes, I do feel childlike, but it’s more like I can own the feelings myself. That’s considered a sign of healing. It might be temporary though, as it often is.

Dissociative symptoms such as multiple personality are usually the result of trauma. I, indeed, endured quite a few adverse childhood experiences. I also experience a large gap between my intellectual ability and my emotional functioning. In fact, when being assessed on a scale for emotional development, I was said to function at a level similar to an eighteen-month-old child. On some subscales, I even function at a level similar to a baby. This distinction may be one reason I tend to disconnect from myself.

Of course, everyone has an inner child. Or maybe more than one. However, for me, I often cannot function like an adult would when I’m in inner child mode. For example, when a child part is prominently present in my body, I cannot usually talk like an adult would.

Right now, like I said, I am able to retain both my childlike wonder and my adult functioning for the most part. Like I said though, this may be a temporary experience. I’m not sure and only time will tell.

#Blogtober20

The One I Love: My Husband #Blogtober20

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, Jeroen. I usually don’t refer to him by his name, but right now it’d be confusing to refer to him as my boyfriend, now husband or whatever constantly.

I met Jeroen 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, Jeroen 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 Jeroen, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have Jeroen’s 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 Jeroen. It turned out that Jeroen 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 Jeroen 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.

Jeroen 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 Jeroen. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

Jeroen 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.

Jeroen 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 Jeroen 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

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

Pandemic Positives

Today, Fandango asks in his weekly provocative question wehther the need to quarantine as a result of COVID-19 has made you a better person.

Lockdown here started in the middle of March with restaurants acutely closing their doors, school closures and, a week later, a no-visitors policy in nursing homes and care facilities. I couldn’t see my husband for nearly three months. Then we could see each other, but we had to keep our distance as much as possible.

Life more or less returned to some sembleance of normal at the end of June. Still, people are scared. I, not so much, though I do take COVID-19 seriously. There are still certain restrictions, most of which don’t affect me too much.

The main thing affecting me was not being able to see my husband. This certainly made me appreciate our very special relationship even more than I appreciated it already. I mean, I chose to go into long-term care last year, of course not knowing that this would mean not seeing my husband for a few months. However, I doubt most marriages would survive even that decision, let alone the consequences. I attribute the success of our marriage mostly to my husband’s everlasting love, but I do deserve some credit for it too.

In general, too, the pandemic has made me more appreciative of what I do have. I am physically healthy and so are my loved ones. In April, a man at the home below me died of coronavirus. Though he was in his 70s, this shocked me a little. My father is in his 70s too, so I’m all the more grateful to still have him.

Other than gratitude, I think the pandemic taught me some level of creativity. Before the lockdown, I found it hard to connect to my husband when I didn’t see him. Now we call each other multiple times a week and text multiple times a day. Of course, I could’ve done that before too, but out of need grew the solution.

I also read somewhere that some people are particularly happier now than they were before the pandemic. I have to say so am I. The reasons may not be related to the pandemic at all, as I’ve also finally settled into the care facility and such.

In general though, I think the pandemic has had and continues to have negative effects on the world, of course. However, if it affected me personally at all, it’s positively. By this I don’t mean my economic, social or health status, of course. Though I’m still financially secure and healthy, no-one knows whether this will remain this way given the huge economic costs of the pandemic. I’ve just become a more positive (or should I say less negative?) person.

Weird Dreams

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?