The Wednesday HodgePodge (October 18, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday once again, so time for the Wednesday HodgePodge. Here goes.

1. What’s something small you tend to sweat even though you know you shouldn’t?
Hmmm, I tend to get nervous and frustrated about a lot of things that are probably minor to others, but to say they’re things I “shouldn’t” sweat, feels a bit invalidating. I mean, I could choose the situation where staff randomly switch up who is going to support me and as a result a staff I didn’t expect shows up in my room. This often feels minor to the staff, but honestly I think they don’t know what it’d be like to depend on an almost countless number of random staff for your everyday needs.

2. October 17th is National Pasta Day…do you like pasta? What’s your favorite? Cooked at home or eaten in your favorite Italian restaurant? How often do you make/eat pasta?
I love pasta. My favorite is either penne pesto or macaroni Bolognese. I know, in the U.S. it’s spaghetti Bolognese but even that isn’t originally Italian, as it’s a combo of Naples’ spaghetti and Bolognese sauce. The way I understand it, in Bologna they eat their recipe only with tagliatelle.

I enjoy my pasta mostly home-cooked. At my old care home, we’d get home-cooked meals on weekends, which was awesome. Here, we get meal delivery service meals each day, but I already agreed with one of the staff that I’ll be helping her cook macaroni Bolognese on the 28th.

3. Do you consider yourself a spontaneous person? Explain.
No, not at all. And usually when I try to do something spontaneously, it means I’ve forgotten something else and I end up majorly messing up.

4. Who are some of your heroes? Tell us why.
Do people who are no longer alive count? In that case, my paternal grandmother, of course. Some of the autistic activist pioneers, like Mel Baggs and Cal Montgomery too. I admire their work in standing up for their and all of our rights to an actually meaningful life.

5. Let’s wrap it up with something light…Taylor Swift…are you a fan? On a scale of 1-10 how much so? (1=who’s Taylor?, 10=a true Swiftie, seen her in concert more than once). If you’re a fan what’s your favorite T. Swift song?
Uhm, 2 I guess. I’ve heard of her. I’m not a fan, but it’s not about her. The thing is, I’m not a pop music fan at all. In fact, I rarely listen to music except for soothing instrumental music when trying to fall asleep. I honestly couldn’t name any of Taylor Swift’s songs if I had to.

6. Insert your own random thought here.
I want to give a shout out to the app Be My Eyes and its AI-based image description component Be My AI. Until this was introduced several weeks ago, all we blind people had were Seeing AI, Envision AI and some other apps that did rather generic image descriptions. Be My AI, on the other hand, does a rather detailed description of images. I can’t copy an image description here because for some stupid reason I can’t get it to write its descriptions in English, but let me just say it’s great.

The Wednesday HodgePodge (August 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.

Looking After My Health

Posted on by Astrid

Hi all. Today’s question for Sunday Poser is how well we look after ourselves, health-wise. Sadje observes that most regular bloggers are over age 50. Honestly, I wonder how they do it, if they also lead an active lifestyle in other respects. But this may be a question for another time.

I really struggle with being health-conscious, as I am quite the impulsive type. Thankfully, I never smoked other than the odd whiff and I don’t care for alcoholic beverages either. Food though is a different story. I’m recovering from disordered eating. In my case, it mostly involved overeating and some purging.

Six years ago, when I had just been kicked out of the psychiatric hospital, I weighed 80kg and could barely walk for fifteen minutes at a time. I am 1.53m in height, so this means I had a BMI of nearly 35, or obesity stage II. My spouse recommended I lose weight for my health. I did, although at the time I only had it in mind to lose the 10kg I was in the obese range. However, I never maintained a weight within the overweight, let alone healthy, BMI range until sometime in 2022. My food addiction was just too strong.

Now, thankfully, I’ve been at a healthy BMI for several months. I was talking to my spouse this afternoon and we were discussing my recent clothing shopping sprees. My spouse said I look after my appearance better, but admitted it was hard back several years ago. I started talking about my being “quite chubby,” only to be corrected by my spouse with “No, you were fat.” That’s what I thought too, so it didn’t come across as offensive at all, but I wanted to downplay things a bit in case my obesity wasn’t as bad and I was making a big deal out of nothing.

Back to ways in which I look after my health. I try to eat enough fruit and veg each day, but this is somewhat of a struggle here at the institution. I also walk at least 30 minutes at the bare minimum everyday. I haven’t had a day gone by since owning my Apple Watch that I didn’t meet my stand goal. Of course, this requires me to only move for a minute each hour, but at least I’m not sitting on my butt for hours on end.

I do take multiple medications. Five, in fact, and that means I’m officially classified as having polypharmacy. This means that I’m at increased risk of health issues due to the number of meds I take. Thankfully, I do get bloodwork done regularly to check for things like kidney function, fasting blood glucose, triglycerides, etc. Only my kidney function has been off, but it hasn’t decreased over the past year and is still within the mildly decreased range (my egfr is 68, if you’d like to know).

I did get a kind of wake up call a few days ago when I found out someone I met at the blindness training center in 2005 passed away recently at the age of 51. We had a lot in common, including obesity, mental health problems and psych medications, etc. I know, I’m no longer obese, but it’s not like my body has magically forgotten the twelve years or so it spent being overweight.

Thankfully, even though I cannot undo the bad choices I made in the past, I can decide to be more health-conscious from now on. Will it make sure that I live till age 83 like my maternal grandma or 94 like my paternal one? No.

There’s no need to blame ourselves for our health issues. I mean, some folks like to call cancer, cardiovascular disease etc., “illnesses of affluence”. This might be so on a societal level, but it’s sick (no pun intended) to blame the individual for falling ill or dying young. I would love to live to age 83 or 94, but it’s only partly within my control.

Trust and Trustworthiness

Posted on by Astrid

Hi all. Today’s topic for Tranquil Thursday is trust. This topic is relevant to my life in so many ways.

Maggie starts her post with a quote which says that, for there to be betrayal, there has to have been trust first. This hits home quite hard. As someone who was at least partly rejected by my parents from infancy on, I am not sure I even remember what it is like to have had that basic sense of trust babies need. It may be for this reason that I never felt particularly affected when family members passed away. Even with my maternal grandmother, with whom I was quite close, I never even felt a sense of grief.

Then again, I did feel this sense of grief when my former assigned staff back at my old care home left her job at the care agency in July of 2022. She was the first person I’d ever fully trusted in my entire life. There were others at that care home whom I trusted almost as much.

I am pretty sure I’ll never trust a professional ever again. Not because of this staff, mind you, but because of the way the staff here at my current care home handle the relationship they have with us residents. Several staff have left their jobs here without ever saying a word and then I didn’t find out until after they’d left. Yesterday a staff I’d repeatedly talked about this to, left as well and I only found out, from his colleague, at the beginning of his last shift.

You may be wondering where my spouse is in all this. Well, I do trust my spouse not to betray me – in the sense of leaving me, mistreating me, or the like -, but it’s only been over the past few months that I’ve been able to truly be myself around my partner.

I am, generally speaking, a very distrustful person. When someone enters my life, their first impression has to be really good for me to have a positive idea about them and, when they mess up, I feel very easily betrayed.

With respect to being trustworthy myself, I’m not sure. I don’t think I am very trustworthy, but it isn’t intentionally. I mean, often I struggle with distinguishing between safe and unsafe people and in this sense end up putting myself at risk as well as potentially betraying my spouse. I remember one time a fellow patient at the psych hospital offering to hold my hand when guiding me and he commented about our spouses not liking this if they saw it. I up till that point was cool with this man as a peer and I initially didn’t see the signs that I was firstly betraying my spouse and secondly also possibly being groomed.

In addition, I can be quite impulsive and dysregulated. I’ve told my spouse that I’m leaving too many times to count. I understand my spouse sees this as significant betrayal too. I know – and my spouse knows this too – that we are meant for each other, but still it probably comes across quite harsh.

Visiting Extended Family

Posted on by Astrid

Hi all. Today’s topic for Throwback Thursday is contact with extended family and especially the coming together and leaving.

When I was a child, my extended family lived all over the country. For reference, I live in the Netherlands, so “all over the country” means anyone was still within a three-hour driving distance. However, we didn’t visit with extended family very often. I rarely saw my aunts and uncles except at my grandparents’ house. As for those, we visited my maternal grandparents several times a year even though they lived closer by where I lived as a young child than my paternal grandmother. My paternal grandmother, we saw most often and had sleepovers with each summer and sometimes at Christmas too.

I don’t think we had any rituals for the coming together. For leaving, my paternal grandmother wanted to give everyone a kiss on the cheek. I didn’t mind and hardly even noticed it until she wanted to give my spouse a kiss when we last saw her in 2016. My spouse politely refused.

Like I said, my sister and I had regular sleepovers at my paternal grandmother’s house. We always slept on thick matresses on the floor, but they felt pretty comfy nonetheless. My grandmother made her own quilts, so she probably lay one of them over us as a duvet.

As for my paternal grandfather, I only ever visited him for day trips, but my sister once went on a week-long trip on my grandfather’s powerboat with him. They actually slept on board.

I can’t remember whether I found saying goodbye to extended family after a visit was over difficult or not. It probably depended on how well I liked said family member.

That brings me to the question of which family member I would like to bring back to life for a visit. I’d certainly choose my paternal grandmother. I have talked positively about her many times before. She declined a lot both cognitively and physically over the last few years of her life and I didn’t feel comfortable visiting her anymore during the last eighteen months she lived. Even so, I know she remained resilient up till the end and, when she could no longer take it, I know she had seriously exhausted all possibilities of remaining optimistic. She died during palliative sedation on May 12, 2018. If I could bring her back to life for a visit, I’d tell her I’m still happily married. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

Quilting: My Grandmother’s Creative Passion #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter Q post in the #AtoZChallenge. Today, I am not going to share about one of my own creative pursuits, but about my grandmother’s main creative passion. My paternal grandmother was one of my main sources of inspiration in many ways.

My grandmother loved quilting. She at one point went to Amish country in Pennsylvania to learn from the people there. By the time I was born, she was pretty good at quilting already, so good even that her quilts were shown at exhibits internationally.

She made a bed quilt for each of her granddaughters (and one of her grandsons, because he specifically asked for one too). Mine, a quilt with lots of images of animals on it, was shown at an exhibit in France. My sister’s quilt was a simpler-looking patchwork design.

When my sister and I were young, we’d often go for sleepovers at my grandmother’s house. She would then take us to the “activity group”, which was a group of ladies gathering weekly in a room at a local estate to do quilting and other fiber arts. I loved working with the fabrics, even though I never even could do basic hand sewing, let alone work the sewing machine or quilt.

My grandmother made quilts until a few years before she died in 2018. We got a quilt she created in 2014 at what would turn out to be my and my husband’s last visit to her in 2016. I fully intended on taking a picture, thinking I had it here with me, but I can’t find it now. Think it’s at my and my husband’s house in Lobith.

I did find a small pillow that my grandma had quilted and which I took with me after her funeral (we were all encouraged to take one or more of her quilts).

When she could no longer quilt due to her eyesight failing, my grandma started knitting. Even when she was put under palliative sedation, according to my aunt, her hands still moved as though she were working with yarn or fabric.

Even though I did not inherit my grandmother’s love for quilting or yarn-based crafts, or her skill for that matter, I do believe I inherited some of her creative spirit and I don’t just mean in the crafting department. My grandmother knew what she wanted and went for it. I am the same.

Mentors and Role Models

Posted on by Astrid

Today’s topic for Throwback Thursday is mentors and role models. Of course, last week, I already shared about my high school tutor, who was a mentor when I was a teen. Today, I’m going to share about other role models.

One of my first role models was my paternal grandmother. She was a fiercely independent, self-determined woman. In 1973, a year after women were legally equal to men here in the Netherlands, she divorced my grandpa. She went to college to become a social worker, eventually becoming the head of social work at the psychiatric institution in her area. In the mid-1990s, in her early 70s, she founded a senior citizens’ living complex, where she lived for nearly 20 years until she needed to go into a care home. She died in 2018 at the age of 94.

One clear memory I have of my grandmother that has stuck with me throughout life and which perhaps unintentionally inspired me, is her comment about her work as a social worker with troubled young people. She told me that, when some young people don’t want to go home to their parents, she had to sometimes honor the teens’ wishes rather than the parents’. Even though I was 19 when first going against my parents’ wishes, and their wish wasn’t for me to live with them, the point was that my opinion mattered even if I was “crazy”.

Later, when I was a teen and young adult, I sought out role models who shared some of my experiences. One of my first role models in this category was someone I met through an E-mail list for my eye condition. She was in her early thirties when we first met online and I was seventeen. Besides blindness, we had some other experiences in common. We eagerly read each other’s online diaries back in the day. She is still a Facebook friend of mine, but, because she has moved on to become more or less successful at life and work and I haven’t, we don’t share the same life experiences anymore.

Some people I considered inspiring, I never even talked to, such as Cal Montgomery, a disability activist whose article, “Critic of the Dawn”, I first read in like 2006.

Currently, indeed, what I look for in an inspiring person or role model is shared experience. That being the case, I consider many of the people I’m on E-mail lists or in Facebook groups with to be inspiring. Then though, our interactions are more based on equality, where any of us can be the inspiration for the others.

I don’t think that I quite have what it takes to be a mentor myself. Though I can provide people with inspiration and information, I don’t really have my life together enough to be a role model. This saddens me, thinking about the fact that I’m older now than the woman I met at seventeen was when we first met.

What do you look for in a role model?

What Day Is It Anyway? (March 24, 2020) #WDIIA

Posted on by Astrid

Okay, so I’m back with another #WDIIA post. As I write this, it’s March 24, 2020, 8:50PM. My paternal grandmother, my last living grandparent, the one who died in 2018, would’ve turned 96 today. It’s weird that I think about that now, as I didn’t call her for her birthday for the last several years of her life. She was profoundly hearing impaired and had severe memory loss. Then again, I could’ve sent cards, but didn’t. I do miss her though. Still, I am thankful that she doesn’t have to suffer through the COVID-19 thing.

I awoke at 8:36 this morning. Had a quick wash, brushed my teeth and got dressed. Had another bowl of yoghurt with crunchy muesli for breakfast. Thank goodness they still had full-fat yoghurt. I normally have fat-free yoghurt, but the unbranded ones are so extremely watery they’re really disgusting.

I went for two walks today, one in the morning and one in the afternoon. Didn’t go for a walk in the evening this time, but did go on the elliptical for twenty minutes. I went on it for twenty minutes yesterday too and only burned 66 calories according to my Fitbit. Today I burned 90. That’s not very good, as a brisk walk burns off more. Still, I’m feeling my legs and back now. Besides, burning calories isn’t the only benefit of exercise. I do really hope that, when I can get weighed in again, I’ll have lost weight. I usually get weighed in at the day center once a month, but not sure that will be happening now.

The week’s groceries arrived today. Tomorrow, we’re going to make toasted ham and cheese sandwiches for lunch. I’m looking forward to that.

Not much else happened today. How has your day been?