Today’s Small Joys (March 2, 2025)

Hi everyone. I’m struggling intensely today. I often say that these days are the best for gratitude lists, but I don’t feel capable of doing an entire ten things of thankful. Instead, I’m going to list some small pleasures from today. I’m joining Sunny Sunday.

1. Coffee. My staff brought me an extra cup of coffee when waking me up.

2. Crunchy muesli. I treated myself today.

3. Earning some top commenter achievements on Reddit. Don’t ask me how.

4. Beautiful weather: it was quite sunny and mild with a daytime high of 10°C.

5. A delicious burger at McDonald’s.

6. A hug from my spouse. In fact, the entire visit was good. Having my spouse on my side genuinely helps.

This was easier than I thought. In fact, the E-mail newsletter I got this idea from, suggested listing only one to three things and I made it to six.

Book Review: Camp Damascus by Chuck Tingle

Hi everyone. A few weeks ago, a person on Reddit was looking for books with queer, neurodivergent characters. Someone recommended Camp Damascus by Chuck Tingle. All I knew about the book before starting to read it, was that it’s horror about a gay conversion camp and that the main character is autistic. I’d hardly ever read horror, but somehow, the book appealed to me. Tonight, I finished it, so here’s my review.

Book Description

A searing and earnest horror debut about the demons the queer community faces in America, the price of keeping secrets, and finding the courage to burn it all down.

They’ll scare you straight to hell.

Welcome to Neverton, Montana: home to a God-fearing community with a heart of gold.

Nestled high up in the mountains is Camp Damascus, the self-proclaimed “most effective” gay conversion camp in the country. Here, a life free from sin awaits. But the secret behind that success is anything but holy.

My Review

The book started out quite weird. Honestly, I had no idea what was happening until midway through the book. That, at first, frustrated me. However, having finished the book, I now feel this unknowing fits in nicely with the plot.

Once I got beyond the first half, I started rooting for the main character and her friends. I really feared the book would have a horrible ending. I felt all kinds of feelings as I made my way through the second half and was chilled to the core whenever something bad happened to the main character or her friends. I also didn’t expect the ending. Honestly, I still have many questions now.

The main character, Rose, is autistic like I said. This isn’t a main focus of the book, but the presentation of her autism is a bit stereotypical. That’s not a big problem though.

I don’t really know what I think of this book. Its weird first half sticks with me, but at the same time, I’m pretty excited to read the author’s next book. As pretty much an intro to the horror genre for me, it’s really good. I hardly do Goodreads anymore, but if I had to rate this book, it’d get 4 out of 5 stars.

Today’s Accomplishments (February 15, 2025)

Hi everyone. Over the past few weeks, all I seem to have done is hang out on social media, talk randomly with my staff and lie in bed. That isn’t entirely true, since I’m still managing to close all of my activity rings on my Apple Watch everyday this month. However, this month so far feels horribly unproductive. I think in part this may be my mindset, so to turn the tide, today I’m once again listing my accomplishments for the day.

1. Showered even though it wasn’t one of my designated shower days. Like I said in my post on spoon theory, showering costs me a lot of energy, so it’s actually quite an accomplishment that I did it on a day I wasn’t required to.

2. Went for an hour-long walk. This isn’t a huge achievement, as I walk most days, but still, I shouldn’t downplay it either.

3. Completed the friends quest with my partner on Duolingo with me having done only slightly less than my spouse. The quest was to complete 50 lessons with 90% accuracy. The accuracy isn’t the problem for me, as I’m doing intermediate English and early B2 is still quite easy. However, over the past few weeks I’d only done a lesson or two a day.

4. Created a “bull in a china shop”, as I call them, out of polymer clay. It’s an elephant that sits on top of a cup. I had been planning to make it for a few days, but always procrastinated on it even though it turned out I could finish the thing in half an hour. No picture yet, as it still needs to have its eyes painted.

5. Wrote a few thoughtful (if I can say so myself) comments on Reddit. I go there everyday now that Facebook is no longer safe, but I try to actually have something meaningful to say too.

6. Wrote this blog post. Does that count? Yes, if I say so, it does and it’s probably the greatest achievement of the day given I had hardly come on WP over the past few weeks.

If You Aren’t Prepared For an Imperfect Child…

Yesterday someone on Reddit’s Childfree sub asked why many parents-to-be have this idea that they’ll get the perfect child. You might say that having dreams for your unborn child is normal, and it is. Having this clear-cut image of what your child will (that is, should) achieve in life, is not.

Of course, there are thankfully many parents who are able to adjust their image of their child if (or rather, when) said child does not conform to their initial expectations. My parents, unfortunately, are not among them.

Like I’ve probably shared on this blog before, when I was a baby and sustained a brain bleed due to premature birth, my parents were concerned for my quality of life. This is more or less normal, although it wasn’t back in the ’80s. In fact, the doctor flat out told my parents not to interfere, since they were keeping me alive period. I am forever grateful for this, despite the fact that the same doctor admitted in 2004 that he sometimes meets former preemies he’d been keeping alive that he now thinks of: “What have we done?!”

At that time, I thought he would not mean me. I was still passing for “just blind” and, though blindness is considered a major disability, it’s one that by itself does not prevent someone from living independently and going to university.

That was the exact same reason my father, when talking about euthanasia of severely disabled babies in 2006, didn’t mean me. He did, however, mean those with intellectual disability and those with severe mobility impairments (the case at hand involved a baby with severe spina bifida). And I’ll never forget that he added to his statement that he didn’t mean me, “because you’re training to live independently and go to university”. As you all know, that didn’t work out.

My parents did find a workaround to the problem of my not being the perfect child they’d envisioned: they decided that my landing in the mental health system and now in a care home for those with intellectual disability, is my choice rather than a necessity. I haven’t fully processed all the ways in which this attitude, which some of my care professionals took over, has impacted me. It hurts though.

Now back to the idea of a perfect child. Even when disability isn’t involved, a child is their own unique individual, with their own strengths, weaknesses, wants and needs. When a parent decides that their child should go to university at eighteen even though they are still in Kindergarten, like my parents did, that doesn’t just impact a disabled child. It impacts any child for whom for whatever reason university isn’t the best place to go at eighteen. Such as, for instance, any child with an average or even slightly above-average IQ. Or any child that is more capable of practical jobs than of academic ones. And any child who, God forbid, doesn’t want to go to university.

If you aren’t ready for a disabled child, a child who isn’t a top achiever, a child who might I say has their own personality, by all means don’t become a parent. You don’t know what your child will be like, after all. Having dreams is alright, but be ready to adjust your image of your child when the need arises. And for goodness’ sake, don’t guilt trip your child for being themselves.

I’m linking this post up with this week’s #WWWhimsy.

Poem: Giving Up Is Forever

Pain is temporary, they say
Things will get better (eventually)
Give it some time…

Giving up is forever, they say
There’ll be no point of return
Be more resilient…

God has a plan, they say
He doesn’t give me more than I can handle
Surrender to His will…

But what if God’s will
Is to give up on me
Forever?


I wrote this poem for dVerse’s Poetics, for which the prompt today is to incorporate some form of the word “give” in your poem. As a spiritual wanderer, I find myself perpetually wrestling with the idea that life has meaning. I came across a comment on Reddit recently in which a chronic pain sufferer said more or less that the idea that one day they will be dead and no longer need to suffer, is comforting to them. The comment didn’t come from a position of “I’ll be in a better place then”, which made me think really. I am not in a space to ponder this topic further right now though.

Goodbye to Yet Another Social Networking Site? #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “site/sight”. I was immediately reminded of the Reddit blackout. For those not on Reddit, this was started in the blindness subreddit (or so I believe) as a protest to third-party apps to access Reddit being charged enormous fees in order to use Reddit’s API. This would, or so I’m led to believe, essentially render third-party Reddit clients unable to continue as of July 1.

What does blindness or sight have to do with this? Well, the Reddit app is particularly inaccessible with VoiceOver, unlike some third-party apps. While the Reddit site is slightly more useable than its mobile app, it’s still not fully accessible. The fact that third-party apps will most likely be going out of business as of July 1, means that those without sight will no longer be able to access the Reddit app.

While R/Blind is back online, many subreddits are protesting indefinitely by having gone private and disabled posting. This gives me the idea that more is at stake than just the blind community.

I joined Reddit less than three months ago, but I’m pretty sure I’ll have to let go of yet another social networking platform. Oh wait, I can technically still use Twitter and Instagram and Facebook, the latter of which I do still use for its groups, but I prefer not to. I’m glad I still have WordPress, although I wonder for how long.

Hello Monday (April 3, 2023)

Hello everyone. I’m joining Hello Monday again this evening. Let me share about my weekend.

On Saturday, my assigned staff supported me for part of the morning. We made a melt and pour soap in the shape of a heart. Sadly, I don’t have a picture and I gave it to my husband. I added gold-colored mica powder to the soap and lavender and ylang ylang essential oils.

I also created an essential oil blend for in my diffuser. I used pink grapefruit, bergamot and ylang ylang essential oils in this blend.

I did ask my assigned staff to inquire about my orthopedic shoes. This has been an issue for at least two years: I started out with supportive insoles, then an ankle foot orthosis either with or without semi-orthopedic shoes and finally now orthopedic shoes, but they still don’t fit. The shoemaker is frustrated, wondering when they’ll finally be good enough. Well, when they fit. Honestly, I am skeptical about the method they used to create an image of my feet: not using putty for a “mold” but using an iPad to create digital images, a method they’d used on a client of my care agency for the first time. My guess is this method requires some level of understanding I don’t possess but am assumed to possess based on my expressive language. Anyway, I don’t care how much of a bother I am, but I’m not accepting the reality as it is now, ie. my needing to buy new regular shoes every two months due to them being damaged from the way I walk. If they can’t fit me for orthopedic shoes, they’ve got to find a way to fix my shoe issue some other way.

Saturday was a good day overall. I was supported by two staff – my assigned staff and another – I get along with very well during the morning shift and my day schedule wasn’t disrupted. For the evening shift, three out of four staff were staff I don’t really get along with and I ended up being supported by two of them. I didn’t mind though, as my day schedule wasn’t disrupted and I did get to do some activities I enjoy.

On Sunday, my husband came by for a visit and we drove to Apeldoorn to have lunch at Backwerk once again. I had a tuna baguette. Then we went into several shops, because I wanted to buy some new spring/summer clothes. Sorry, no pictures once again. I bought a blue, flowery skirt and three simple tops in black, white and blue.

Sunday evening was a bit hard. It started out well with the staff explaining to me who would be supporting me throughout the shift. This was repeated several times. Then, at 6PM, unexpectedly a staff who wasn’t supposed to come and whom I don’t get along with, showed up. I had a meltdown and eventually, after a bit of an explanation from the other staff and trying an activity for a few minutes, I chose alone time over time with him.

I also spent my weekend working on the #AtoZChallenge, of course. I don’t generally prepare my posts in advance, so I have lots of work to do on the day itself. I also discovered Reddit last week. That is, I had an account back in like 2008, but they changed things up a lot so that’s no longer valid. I love browsing Reddit now and commenting where I can. I haven’t created a post yet.

Overall, my weekend was mostly good with some negativity due to the unexpected staff change. For those not aware, I am autistic, so it isn’t just that I don’t get along with some staff, but if they’d told me in advance, I could have been prepared.