Disability: Describing My Impairments #AtoZChallenge

Posted on by Astrid

Hi everyone. I know for sure I did a post describing my limitations on my now defunct blog, but don’t think I ever did one on here. Besides, even if I did, I learn something new about myself, including my disabilities, all the time. For my letter D post in the #AtoZChallenge, I thought I’d describe my disabling conditions in lay terms. Oh wait, the lay terminology is going to be really tough.

First, I am blind. I have what is called light perception, which means that I am able to see whether it is dark or light around me, but not what direction the source of light is coming from (that ability would be called light projection). Functionally speaking, even though I can still tell day and night-time apart and this is what sets the totally blind apart from those with any vision in medical terminology here in the Netherlands, I consider myself totally blind.

Next, I (most likely) have mild cerebral palsy (CP). I say “most likely” because my parents didn’t tell me whether I had any diagnosable condition that would explain my mobility impairment and I stopped seeing a physiatrist (physical disability doctor) when I was around nine. In any case, I walk with a drop foot on my left side that gets worse when I get tired. Though I can, with difficulty, walk a distance of about 5km at a time when I’m very energized that day, I do fall more easily than non-disabled people. I didn’t realize this until, several years ago, I read on a CP-related blog about fall risk assessments containing a question about whether you’ve fallen for any reason in the past year. Well, the blogger said hardly a week goes by that they don’t fall. That isn’t exactly true for me, since I hold onto someone’s arm or hand when walking, but I do fall at least once a month.

CP (or whatever it is) also means my fine motor skills aren’t great. I used to get physical therapy for this. I did exercises like touching my thumbs to each of the other fingers. I can now do that easily with my right hand and with some difficulty with my left. I cannot use a knife and f ork to eat with and, even with my specially adapted spoon, often make a bit of a mess. I can type and do so with both hands, but I much prefer to use my right hand and, even though I was taught the ten-finger touch typing, I don’t do it fully correctly. As long as it works, though…

Since CP is caused by brain damage, in my case a brain bleed sustained shortly after birth, it can also come with other difficulties, such as processing issues and lower energy levels. This can also be part of autism, which I was diagnosed with at age 20, of course.

Autism, of course, has its core symptoms of differences in social communication and repetitive behaviors and interests. Because I can hold down a reasonably normal-sounding one-on-one conversation about myself, as clinical assessments often are, I am diagnosed as “mild” or level 1. I am not “mild” by any means, truthfully.

I am tired. I was writing an entire rant on why I am nnot “mildly” autistic, but I was using all kinds of technical terms and I promised you a lay explanation. I don’t think this post makes much sense, but oh well.

Creativity: How I Have Evolved As a Creative Over the Years #AtoZChallenge

Posted on by Astrid

Hi everyone. It’s late once again as I get to my letter C post. I don’t tend to think up my topics in advance. Same with this one. It actually popped up in my mind several minutes ago and here I am writing about my creative journey. Okay, I did my entire #AtoZChallenge of 2022 on creativity so am pretty sure I covered this topic already, but let’s do a repeat in that case.

I am not very imaginative. Like I said on Monday, I most likely have aphantasia. This combined with blindness and my other disabilities doesn’t make me all that great of an artist. And yet, I love to create!

In childhood, I’d often draw dresses and other fashion items, pretending I was a fashion designer. I lost the vision needed to draw around age 12 and, even though my drawing teacher found me paper that would create raised lines when drawing on it, I also hardly drew anything beyond stick figures in boxes from then on. Don’t ask me about their meaning – yes, I know they meant something, but for the life of me I can’t remember what.

I didn’t craft or create art again until my mid-twenties. Then I started card making. Over the next five years followed at least a dozen other crafts. And now, I’m stuck on polymer clay, although to be honest I don’t use the medium nearly as often as I used to.

Creativity can, of course, also involve the written word. I wrote stories from a young age on. I started out writing fiction and the occasional poem. Now, I almost exclusively write blog posts.

I must admit, as I think back on my creative journey, that my level of imaginativeness has probably declined over the years and I didn’t always experience aphantasia. Not that I ever had a rich inner world. Well, that is, I have and always had a strong inner monologue (or inner cacaphony, in fact) and could probably describe an inner world in words, but I couldn’t visually imagine it at all.

I think this lack of imaginativeness is the reason I write personal blog posts mostly and craft mostly realistic figures or things from tutorials. I mean, of course a unicorn isn’t real, but I almost literally copied my style of unicorns from a tutorial. Realizing this makes me feel really sad.

Bulimia (Or Something Like It): My Relationship With Food and My Body (Revisited) #AtoZChallenge

Posted on by Astrid

Hi all and welcome to my letter B post in the #AtoZChallenge. Today, I’d like to share a more personal piece and describe my history of disordered eating and body image issues. After publishing this post, I saw I did a post on this topic in 2019 too.

I first started struggling with a negative body image when I was about thirteen. I remember writing stupidly specific worries in my diary about food and my weight, such as whether the nails I’d bitten off would cause me to gain weight. All the while, I didn’t realize that I was, in fact, pretty close to overweight if not overweight already from consuming enormous quantities of candy on weekends and daily sausage rolls at the school cafeteria.

I was lucky that I never became significantly overweight until around age 25. By that time, I had developed something at least bordering on bulimia: I ate a full 500g bag of candy, sometimes more, in one ten-minute sitting at least three times a week. I also purged, although I did that after regular meals as much as after bingeing.

In the six years that followed, I gained over 20kg in weight and, by the time I was kicked out of the psych hospital to live with my spouse in 2017, I weighed 80kg. At my height of 1.53m, this is quite far in the obese range.

Yet my body image wasn’t as much of a concern to me at the time. Yes, I hated the way I looked, but at the same time I was too careless and unmotivated to change my habits. I had stopped purging for the most part by the time I moved in with my spouse, although I still occasionally did it as a form of emotion regulation.

Now, I’ve been at a healthy weight for about a year. Don’t ask me how I got here, as honestly I don’t really know. I mean, yes, I’ve been supported by a dietitian since early 2022, but honestly I can’t quite say I follow her advice. I mean, okay, I no longer binge due to my food being locked away, but I do snack on “bad” foods all the time.

My body image, honestly, is still as screwed as it always was. I still swing between underestimating and overestimating my size, between hating my body and not caring about it. I still purge occasionally, though not really out of a wish to lose weight, but more out of a need to self-regulate.

Looking back, I don’t think I ever had a genuine eating disorder. I mean, I might’ve at one point met the criteria for binge eating disorder, but I’m not so sure about that. I think my disordered eating is really more a symptom of my emotion regulation difficulties.

Aphantasia and Alexithymia #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to the #AtoZChallenge for 2024, letter A. I don’t have a theme, but I thought I’d do a repeat of what I did several years ago (I think it was in 2019), sharing posts on topics relevant to myself. I might still go off on a tangent every now and again. Awareness posts are one of my strengths and I’ve covered autism more than enough, so today I thought I’d cover two subjects I’m still relatively new to myself: aphantasia and alexithymia.

Aphantasia is also known as “mental blindness”, although it can be related to any of the senses. It’s an inability to form a mental image of something (or to imagine a sound, smell, whatever). As it turns out, most people can see relatively vivid images in their mind’s eye when they think of an object or person even when said object or person isn’t with them right then. They can also picture a scene, such as a beach scene, in their mind’s eye. I, however, can only picture objects and people very vaguely if at all, even when they’re things I used to be able to see in real life when I still had some sight.

Moreover, like I said, aphantasia can affect the other senses too. This was what made me realize I probably do in fact have aphantasia and am not just a blind person who has forgotten what it’s like to be able to see. After all, when doing a meditation practice that, for instance, tells me to imagine a beach scene, including hearing the waves crashing against the beach, seagulls making their sounds in the distance, feeling the sand between my toes, etc., I can’t. And it’s not for lack of trying. I mean, I remember once, many years ago, one of the child alters creating an inner beach by writing its description out here on the blog. I’m pretty sure that wasn’t actually effective.

Aphantasia is related to a phenomenon I did hear about several years ago, called alexithymia. This is the inability to recognize, identify and describe one’s own emotions. I remember getting a questionnaire on this at my last autism assessment in 2017, but was in denial about how significantly alexithymic I am in fact, because I, unlike the stereotype of alexithymia, don’t consider deep, emotional discussions a waste of time. In other words, I am not unwilling to describe my own feelings, but merely unable.

Neither alexithymia nor aphantasia are classified as disorders in their own right. They often co-occur with autism, which of course isn’t necessarily a disorder either but is classified as such and is, in my case, certainly disabling. Then again, so is my inability to identify my own emotions.