Things That Made Me Smile (July 26, 2021) #WeeklySmile

Hi all on this summerly Monday. We had a thunderstorm yesterday early evening and are expected to get more later this evening. However, right now it’s still pretty sunny and warm outside.

Today, I am joining in with The Weekly Smile. I am also joining in with Cee’s Flower of the Day, since my smiles involve flowers.

First, over the past week or two, whenever I returned from a walk with my day activities staff, I always smelled lavender close by my care home. I don’t care for the smell of lavender in perfumery, although in essential oil blends it’s great. The actual flower smells awesome too! Today, I finally took my phone with me on my walk so that we could take a picture of the plant.

Lavender

Then, a few days ago, a staff pointed out a huge bush of geraniums near the day center. I still remember the characteristic red color from when I still had some vision and I love it. Its smell though is one of my least favorites, including in essential oils. This morning, I went out and actually touched the bush and indeed, it’s huge!

Geraniums

Generally, the presence of nature really makes me smile. It’s no wonder that, when asked what I miss most about being unable to see, I generally reply the ability to appreciate the beautiful sights of nature. However, I am still able to hear and feel and smell the beauty of nature!

What made you smile this past week?

Online Window Shopping #WotW

Hi again everyone. Today I’m joining Word of the Week. The idea is to sum up your week in a word or phrase. Today’s phrase of the week is: online window shopping.

You see, like I mentioned last week, I had resolved not to spend any more unnecessary money until my benefits arrived on the 23rd (last Friday). I actually kept this promise to myself and didn’t buy anything, but over the week, I did have a lot of ideas of what I wanted to buy once my benefits arrived. Then when they did, it was almost the weekend, so I decided not to spend my money yet because my packages wouldn’t be sent out till after the weekend anyway.

Most of my online window shopping involved crafty stuff. Like I mentioned yesterday, I got it in my head that I wanted to try latch hooking again. Thankfully, my day activities staff remembered that a client at my pre-COVID group at the day center used to do this but no longer did. She went looking for the supplies and, on Thursday, I had a bit of canvas, a latch hook and a whole lot of yarn. The yarn was cut too short for me to work with right now, but I had some yarn and lace in my room too. Learning the craft again was hard, but I eventually managed to make some knots.

I also found a really cool polymer clay ornament while browsing some other blogs and this got me thinking of restarting polymer clay. Like jewelry-making and latch hooking, I did this in the past but threw my supplies away because I couldn’t manage the craft fully independently. Now that I let go of that ambition and actually have the one-on-one support I need, I am really thinking of restarting the craft. This blogger used an embossing folder and glitter glue to decorate her ornament, which had me looking at card making stores again too. I’m pretty sure that’s the only craft I’ll never pick up again.

I also did some online window shopping that didn’t involve crafts. Like, on Thursday I found out that NVDA, a free screen reader I occasionally use on my PC, now works with the Vocalizer voices I’m used to with JAWS and VoiceOver (my regular PC and iPhone screen readers). I immediately downloaded the add-on, only to realize that of course I’ll need a license. I mean, NVDA may be free, but the Vocalizer voices are not. A license costs €99. I’m still undecided as to whether I want to invest in it or wait for JAWS to fix the one major bug that leads me to using NVDA, that is, the inability to use the WordPress block editor with it.

Lastly, on Friday, I got talking to my assigned home staff about stim toys. Specifically, chewable jewelry. I initially thought that only U.S.-based sites sold them, but it turns out several of my fellow clients use them. I looked up chewable jewelry and found several online stores in the Netherlands that sell them. Of course, they’re marketing them mostly for children, so I may need one for heavier chewers. I haven’t yet decided on buying it though.

How would you sum up your week?

Word of the Week linky

#WeekendCoffeeShare (July 24, 2021)

Hi everyone on this late Saturday evening. I’m joining #WeekendCoffeeShare even though it’s rather late for coffee here at nearly 9PM. Besides, I had green tea this evening. I can of course still make you a Senseo, although with the amount of coffee stains in and on my coffee maker I wouldn’t recommend it. So I guess a glass of water or a soft drink should suffice. I hope that’s alright. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that I’m so grateful the weather has been much milder over the past week than it was the week before. Of course, we here in Raalte weren’t personally affected by the floods either and damage control down in Limburg is still ongoing. However, the weather here has been truly beautiful.

If we were having coffee, I’d share that, thanks to the weather as well as my feet cooperating, I have been able to get in a lot of walking lately. I got in over 11K steps each day of the week so far.

I am still not sure I’ll sign up for Steptember, the annual fundraiser for the cerebral palsy charity this coming September. The aim is to raise funds while aiming for 10K steps each day, regardless of whether this is done while walking, wheeling, biking, etc. Last year, I did participate, but I didn’t really like the pressure I put onto myself by signing up.

If we were having coffee, I would tell you that I’ve been really crafty over the past week. I have been making some new bracelets. One of them, I sent to my mother. She received it in the post today and was happy with it.

I also picked up trying to do latch hooking again. This is a yarn craft for making rugs etc. I learned this at the blindness rehabilitation center back in 2005 and tried to pick it up again briefly in the psych hospital, but was too easily frustrated for it back then. So far, I am not 100% sure I understand the technique again yet, but I’m confident that ultimately I’ll learn.

If we were having coffee, I’d share that I’m truly grateful for all the comments on my blog over the past few days. It makes me feel so happy to see that others read and appreciate my writing.

If we were having coffee, lastly I would announce that tomorrow is my third blogiversary! That is, it’s the third anniversary of my having (re)started this blog. I say “re” because I used this domain (or the WordPress.com subdomain at least) back in 2011 too. I have been on WordPress for over fourteen years and have had an online diary ever since 2002. I still keep learning and growing everyday. I am so, so grateful that, contrary to what some “influencers” say, blogging isn’t dead at all. I hope it never dies.

How have you been?

The Color Of Words #SoCS

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “color”. I already shared about my perception of color several months ago. Like I shared then, I no longer have the ability to see colors in the physical world due to being totally blind. I used to as a child though and still retain the ability to see colors in my mind’s eye through synesthesia.

I mentioned that color words don’t always correspond to their own color. For example, the word “green” is mostly red. The word “color” itself is mostly yellow. Both o’s are yellow and so is the c. Interestingly, so is the u in the British spelling of the word.

I love some words more depending on their color combinations in their synesthetic presentations in my mind. For example, really I like the British spelling of “colour” more than the American one. The slightly darker shade of yellow for the u adds an interesting shade to the word that makes it somehow more appealing. Same for the word “synaesthesia” in its British spelling. I don’t honestly think there are many words whose American spelling appeals more synesthetically to me than its British spelling. Then again, I am used to mostly using American English on my blog, so that’s what I’ll do.

I Am Not a Calculation Mistake

Like I mentioned last week, I have been doing a Bible study plan on YouVersion called Hope Heals in the Midst of Suffering. I finished it yesterday and it was awesome. It was written by Katherine, a woman who survived a severe stroke shortly after becoming a mother, as well as her husband.

The plan follows Joseph’s story, the part of Genesis I had gotten stuck on in my Bible in a Year plan. I was glad to read it now.

At one point, Katherine shares that, about a year after her stroke, she is still unable to perform many basic functions. She is still in adult diapers, unable to eat, unable to even lift up her head. Her family is having Thanksgiving dinner with her son, then a toddler. As the family are playing with her son, she wonders if there was a mistake. Should she have died from her stroke?

It was at this point that a lightbulb went off in my head. I, too, have often wondered whether my life is a mistake. A calculation mistake, to be exact.

You see, I was born over three months premature. Officially, I was born at 26 weeks 4 days gestation. However, it is quite probable given the circumstances of my conception that my mother really wasn’t yet 26 weeks along. At the time, 26 weeks gestation was the cutoff for active, life-saving treatment in the NICU.

My parents weren’t even sure I should be treated actively. At one point, when I’d suffered a brain bleed, my father asked the neonatologist what he was doing with regards to my treatment. “We’re just keeping her alive,” he said. He (or his nurse) added that my father shouldn’t interfere in my treatment or he’d lose custody of me.

In 2004, when I was eighteen, this same doctor was quoted in a newspaper as saying that he sometimes meets preemies he’s kept alive back in his early days as a doctor, about whom he wonders: “What have we done?!” I at the time tried to reassure myself that he wouldn’t have meant me. Or would he? I, after all, am multiply-disabled and in long-term care.

The devotional in the Bible plan I was reading continued. Katherine at this point heard God clearly speak: “I am God. I do not make mistakes.”

This was what I needed to hear! I have tried to find my neonatologist on Google several times since that newspaper article. However, I don’t need his opinion. I have talked to my father about his views on my quality of life several times, but it hasn’t helped. I don’t need my father’s opinion either. God chose for me to be kept alive and that’s what matters.

Grace and Truth

Also joining Friendship Friday this week.

Unsettling Dream

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.

Tanka: These Weird Times

Stay silent, listen
Hear the birds’ cheerful chirping
Hear the wind blowing
Hear the music of nature
Despite these times of crisis


I am pretty sure I already published this poem somewhere, but I can’t find it on here and I don’t post my poetry anywhere else. I found it in my Drafts app, which I sometimes use for creative writing. I originally wasn’t sure I wanted to post it to my blog and as I write this, still am not 100% sure.

It may not even be the most appropriate time for this poem. Most people are probably, understandably, tired of the pandemic and want it to end, not be at a crisis point. And honestly, I’m not sure where it is currently. I mean, I saw a headline today saying COVID is being fought well, but the virus fights back. Something like this. Let’s all hope this crisis is over with quickly.

I am using this as an attempt at working the block editor too, as on my iPhone I can of course no longer use the classic editor and the Drafts app works only with Apple devices. I was going to find a workaround, but then decided I would need to get acquainted with the block editor one day anyway. So, well… whatever.

I’m submitting this poem to dVerse’s Open Link Night.

Early Days Online

Yesterday, Rory asked whether we remember our first times online or with a computer in general. I certainly do. I may have shared some of these memories before, but just in case I haven’t, I’m going to dedicate a post to them.

I got my first computer at the age of eleven in January of 1998. That one didn’t have an Internet connection though. Its operating system, Windows 95 SP2 (which my father explained was like Windows 96), did support Internet Explorer, but my screen reader didn’t. That screen reader, Slimware Windows Bridge, was quite primitive. So was the Braille display, which I remember to be attached to my computer via the printer port. Though it did work with just Braille, without speech, if the speech unit in the Braille display malfunctioned, so did the entire thing.

In 2002, I got my second computer and my first JAWS version. For those who don’t know, JAWS is the most commonly-used screen reader today. This computer had Windows 98 installed on it and it did have Internet access.

My father at first was adamant that I use the Internet as much as I want, even though we had a dial-up connection back then (not the kind where you can’t phone and go online at the same time). He said that, if the bill got too expensive, we’d get broadband. Then when the bill did get to over €300 over the summer, it turned out broadband wasn’t available at our house. After a few months of my parents trying to restrict my Internet access and my trying to evade said restrictions, we eventually got cable.

I got my first online diary that fall of 2002. It was on DiaryLand if I remember correctly, though I often switched between DiaryLand, Diary-X, Teen Open Diary and whatever else was available. The only service I never actively used, was Xanga. I also had a Dutch online diary.

The worst mistake I made, looking back, was not taking care of other people’s privacy. I not only wrote out every argument I’d had with my parents in detail, but also referred to other people, such as my teachers, by their real names. One teacher in particular had a rather unusual last name and at one point was googling her name for genealogy purposes. Not surprisingly, she stumbled upon my Dutch diary. Though I (interestingly) had used a nickname there, she quickly found out it was me. She personally didn’t mind, but did caution me that others might.

What mistakes did you make in your early days online?

Five Things I Love About Summer #5Things

Last year, as part of the #5Things challenge, I shared five things I hate about summer. Despite these, summer is still my favorite season. It’s therefore great that today, we’re asked to share things we love about summer instead.

1. Being able to wear more summerly clothes. I usually wear jeans in winter and fall, but come spring and especially summer, I really love wearing skirts and dresses. Recently, I was going to comment this on a traditional, Christian blog only to realize that maybe the author wears skirts all year round out of modesty. This then made me realize that, in fact, at least one of my dresses is quite suited for fall too. Anyway, I totally love the ability to wear looser-fitting clothes. This might again not be strictly summer-related, but for me it so far is.

2. Summer fruit. I love the time blueberries, peaches and raspberries are sold in supermarkets again. It’s totally amazing what a selection of fruit one can choose from in summertime. I also love freshly picked fruits from my parents’ or in-laws’ gardens.

3. Ice cream. I really used to love it when the ice cream truck came by as a child. Last year, an ice cream truck came by my care facility several times. Its owners usually served county fairs, but due to COVID, these were canceled. The truck had an earworm of a theme tune with the refrain of “Si, si, si, si, delicious gelati”.

4. Barbecueing. Too bad my family haven’t done this so far this year. I am a total meat person when it comes to this, although I’ll have some fruit salad too.

5. The sunlight. I love it that the times of daylight are much longer in summer than in winter. This enables me to be outside more often during the evening and also to enjoy more natural light while indoors. Although the sun definitely causes its problems (ie. sunburns), I generally love it when it’s shining. Besides, I’m making a habit out of wearing sunscreen everyday now.

What do you love about summer?

Gratitude List (July 18, 2021) #TToT

Hi all on this beautiful Sunday. I used to have this rule that I had to write my gratitude posts on Friday or they didn’t “count”. Then I would allow myself to post on Saturdays too. Now it’s Sunday. I think it shows I’m pretty rigid with my rules of what is the “right time” for a certain post. I mean, the Ten Things of Thankful (#TToT) linky is open till Tuesday and even if it wasn’t, that wouldn’t be a reason not to publish a gratitude post. Gratitude is always useful, so…

1. I am grateful my family and friends are still healthy and haven’t contracted COVID. Many are fully vaccinated by now too.

2. I am grateful I don’t live in the flooded area of the country, let alone in Germany or Belgium, where the flooding has been much worse. There’s been a lot of outrage at the way the Dutch handle the flood, but I think they’re handling it as well as they can. I am grateful we’ve not had any deaths due to it so far.

3. I am grateful for a sunny day here. Several, in fact. Since last Friday, the rain is pretty much gone out of this area of the country and we’re having warm summer weather.

4. I am grateful my GP took my abdominal issues seriously. Like I mentioned on Friday, I am back on a higher dose of magnesium. Here’s hoping this will work.

5. I am grateful I am still pretty motivated for creative endeavors. I’ve been making some jewelry, lip balm, as well as a melt and pour soap this evening.

6. I am grateful for the ability to online window shop without actually buying anything. I have so much I want to buy once my benefits arrive, but I’m glad I’ve restrained myself from spending any more money until then at least.

7. I am grateful for grilled hamburgers with cheddar cheese. We had those for lunch on Thursday.

8. I am grateful for a short chat with a woman from the care home a few doors next to mine. I mentioned her before, we used to talk a lot at day activities and she’s even had coffee in my room one time. Now due to COVID, we can only meet outside. I am however grateful I got to chat to her again and she’s well.

9. I am grateful my husband came by today. I hadn’t seen him in two weeks, as he had to work last week Saturday. Today, we went to Subway to have lunch.

10. I am grateful I found the Bible reading plan I’m currently following. It’s called “Hope Heals in the Midst of Suffering”. I can totally relate to the plan’s author’s experiences and they are so validating!

What are you grateful for?