Total Blindness

A few weeks ago, the topic of MindloveMisery’s Menagerie’s Tale Weaver was the loss of the sense of hearing. I was secretly hoping for a tale weaver on its visual counterpart to come up and my wish was granted today: today we’re asked to weave a tale about a character who’s blind. It doesn’t necessarily have to be fiction or so I believe.

As most of my readers know, I have always been legally blind. I at best had around 20/800 visual acuity in both eyes, although I claimed to have 20/400 for a long while. By the time I was eight or nine and was pretty much given up on vision-wise by my doctors and parents, I had roughly 20/1000 vision in my left eye at best and my right eye was even worse. For those who have no clue what visual acuity means in daily life, I was able to see someone raise their hand at one meter’s distance but not count their fingers.

Even so, I didn’t consider myself functionally blind until I was thirteen and transferred from special education to a mainstream setting where I was the only person with a visual impairment. There, there was no point in accentuating my tiny bit of vision, since compared to my peers, I was as blind as a bat.

To this day though, I find it hard to accept the fact that, in essence, I’m now totally blind. I only started considering this possibility after my most recent visual screening at the blindness agency, which revealed that I only have a small window of light perception left in the central part of my left eye’s visual field. For those unaware, light perception is the ability to detect the presence of the eye doctor’s flashlight, but notably not the ability to detect what direction it is coming from (that would be light projection). In other words, I am no longer able to tell where a window or other light source is located within my visual field or even whether there is a light source present if I’m not directly looking at it.

Since I always had some residual vision, no matter how little, I have always wondered what total blindness would look like. One day in fifth grade, one of my support staff told us about having been blind for two weeks due to some disease and it not looking like darkness at all. Other blind people have asked rhetorically: “Does your forehead see darkness?” No, of course it doesn’t.

Like I said, I was given up on by the eye doctors when I was eight or nine. For this reason, I didn’t have regular visual check-ups. I had one in 2005 at the blindness rehabilitation center and then again in 2013 in preparation for cataract surgery. In 2005, I had light perception and some level of environmental light awareness in both eyes. By 2013, I had gone completely, totally blind in my right eye. However, I was unaware of this until the optometrist tested my light perception in both eyes.

Since being made aware that I’m totally blind in one eye, I’ve tried to cover my left eye to see what total blindness looks like. I seriously don’t get a clue. In fact, the closest I come is that blindness, indeed, is the absence of any sight at all, including the sight of darkness.

This does make me think that, when (I’m pretty sure it’s “when”, not “if”) I’ll have lost that last tiny bit of light perception in my left eye, I won’t be aware of it at all for a while. It terrifies me.

#WeekendCoffeeShare (September 25, 2021)

Hi everyone on this cloudy but warm Saturday afternoon. We’re supposed to get temperatures to rise to as high as 25°C tomorrow. I remember once, I think it was in 1999, writing in my diary in late September that I wished for this high a temperature for once that year still. Three or four years ago, it even got to 27°C one day in mid-October.

Anyway, I’m joining #WeekendCoffeeShare. It’s 2:30PM, so I just had my afternoon coffee, but the other clients are still having theirs. Yesterday, the late shift actually came to my room with another cup of coffee at 3:15PM, because apparently the other clients had been late having theirs and she erroneously thought this meant I still needed to have coffee too. I didn’t mind, of course. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that I managed to get my corona pass ready in time for this requirement in restaurants and indoor events today. Not that I’m likely to go eat out at a restaurant or go to the theater anytime soon. In fact, I’m feeling a bit off about this requirement, even though, as a fully vaccinated person, I’m good to go. Getting the CoronaCheck app, on which you need to create your pass, to work, was a bit of a hassle, because for some stupid reason the “Next” button to get beyond the introductory screen wasn’t easy to locate with VoiceOver. I eventually asked one of my staff to click that button for me and from there could do everything myself.

If we were having coffee, I would share that I celebrated two years in the care facility earlier this week. I made a cheesecake with my favorite large cookies, ie. stroopwafels.

Stroopwafel Cheesecake

I did worry at first whether the other clients could eat it, as most are at higher risk of choking. However, apparently the staff were able to sufficiently blend the cake so that it was edible by everyone.

If we were having coffee, I’d tell you that this week was quite a good one in the walking department. I got in over 10K steps almost everyday. That one day that I didn’t reach my goal, I really should have looked at my Fitbit, since I needed only like 100 more steps to reach it.

If we were having coffee, I’d tell you that, at the recommendation of one of the community psychiatric nurses at the mental health team, I’ve been taking my phone with me whenever I go on walks. We were discussing my grief about my vision loss and the wonders of technology and she suggested I take more pictures on my walks. Last Tuesday, I took a picture of the cows in a nearby field.

Cows in a Field

If we were having coffee, lastly I would share that I sadly haven’t been too creative lately. I tried to create a necklace this morning, but found out midway through it that I didn’t have enough of a certain kind of beads that I needed for it. I didn’t want to start redesigning it all over again, so will do that at some later point.

Overall, this week wasn’t too intense, other than Wednesday. It was a pretty good week.

How have you been?

An Eventful Wednesday

Hi everyone on this Wednesday evening. The weather was beautiful today. It was cold in the morning, but sunny and about 21°C in the afternoon.

This morning, I had an appointment with my community psychiatric nurse. I hadn’t seen her in four weeks, as two weeks ago she had had to cancel due to a crisis situation. This time, I was able to talk through some of my struggles. I vented some of my grief with respect to my blindness. I ended on a positive note though, sharing the wonders of VoiceOver Recognition.

At 1PM, I had a quick dental check-up. The dentist comes to our day center four times a year for these, so I didn’t have to travel. Thankfully, all was well and I was literally gone within minutes.

Then I had a talk with my support coordinator about my upcoming care plan review. We had to discuss my risk inventory. This is a long list of possible risks someone can experience, such as of choking, falling, epileptic seizures, aggression, etc. With each box, the staff have to tick of “Yes” or “No” and if yes, elaborate on the risk. I disagreed with several “No” answers, but then my support coordinator explained that this is within the current care situation. For example, there is no risk to my personal hygiene because my staff are there to help me with this.

I did get my coordinator to add a “Yes” to risks re social media use because my Internet use can often trigger me and lead to meltdowns. I did ascertain that these risk assessments are not necessarily associated with restrictive measures. In other words, just because there’s a risk associated with my Internet use, doesn’t mean they need to restrict my online activity.

Later, I realized there really needs to be a “Yes” in the box on risks associated with overweight too. I had said this at the meeting but my coordinator had said that since I don’t suffer with sores due to fat or the like, there’s no risk. I do feel there is, given that my BMI is above 30 and I need support in maintaining a healthy’ish diet.

I went on three walks this afternoon and evening. On my way back from one of them, my one-on-one asked me whether I wanted to photograph the chickens near the day center. A client at another care home here has always wanted to have chickens and he finally got his wish granted a few weeks ago.

Unfortunately, only one of them lays eggs so far. The guy whose chickens these are says the other one’s crest needs to get redder before she will lay eggs. My husband said it might actually be a rooster though. I hope not.

#WeekendCoffeeShare (September 19, 2021)

Hi all on this late Sunday evening! Boy, am I late joining #WeekendCoffeeShare. I’ve had all my coffee for the day and even had my last soft drink. If you’d like one, I’m sure I can still pass you one through the Internet though. Let’s have a cup of coffee or another drink and let’s catch up.

If we were having coffee, I’d tell you that the weather is still pretty good for September here. Temperatures rose to roughly 20°C in the afternoon and it’s been mostly dry with some sunshine and some clouds. Today while in the car being taken back to the care facility from Lobith, my husband even said I had to wear sunglasses. Now sadly the sunlight wasn’t particularly bright to my (almost) totally blind eyes, but yesterday I’d gotten a headache from what might’ve been exposure to bright sunlight that I wasn’t consciously detecting.

If we were having coffee, I’d share that my husband and I had our tenth wedding anniversary today. We celebrated it yesterday with a large Domino’s pizza. We each had a milkshake too, but it was far too thick for my liking. I couldn’t finish drinking it, whether I tried the paper straw that came with it or my own silicone straw.

If we were having coffee, I would finally show you the picture of the present I gave my husband for our anniversary. It’s a polymer clay heart with the text “Assie houdt van je” stamped into it. Assie is my nickname (and no, in Dutch, there is no connotation to asses) and “houdt van je” is Dutch for “loves you”. There is magnetic tape at the back so that my husband could hang it on the fridge.

Polymer Clay Heart for My Husband

My husband really appreciated the gift.

If we were having coffee, I would tell you that the rest of my week was okay. I was a little sad and grieving the loss of my eyesight, as well as worrying about my upcoming care plan review. The review won’t be until September 30 and of course it doesn’t involve judgment and it isn’t a test.

However, I have been increasingly aware of my inner fight regarding my wish to stay here in Raalte and yet my feeling that I ought to be looking for another care facility or working towards living with my husband. In my paragraph about the bright sunshine, I almost wrote I was taken “home to the care facility” rather than “back”, as if our house in Lobith is less of a home to me than the care facility. My support staff would consider this progress, in that I’m beginning to feel safe here at the care facility. However, there’s an inner voice that tells me that this is betraying my husband. I know he supports me staying here for now, but I also know he struggles with the distance. Ugh, this is so hard.

If we were having coffee, lastly I’d share that I’m very curious about iOS 15, which will be out tomorrow. Like almost every year, there is one critic on the Dutch VoiceOver E-mail group who warns all of us to wait because it’ll be drama. This year though, the accessibility bugs seem not as serious as last year and especially the year before. Still, I’ll probably wait at least a couple of weeks until at least some of the other members of the group have actually installed the official release. I am really curious about live text in photos and improved VoiceOver image recognition though.

How have you been?

#WeekendCoffeeShare (September 4, 2021)

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Things That Made Me Smile (August 30, 2021) #WeeklySmile

Hi everyone on this beautiful Monday evening. I was feeling a bit down in the dumps earlier today. The reason is the fact that I had a vision screening by the blindness agency this morning. The result was more or less as I expected: I only have a tiny bit of light perception in the central visual field of my left eye. It however was a bit of a bummer too, in that I’d hoped to perform slightly better.

To cheer myself up, I thought I’d join The Weekly Smile and share how amazingly far assistive technology has come. It may not replace actual vision, but, combined with my imagination, it can go a long way.

What I mean by assistive tech specifically is VoiceOver Recognition, the iPhone’s built-in image description functionality that was released first in iOS 14 not even a year ago. Last month, I already mentioned that it can recognize some basic shapes and colors (such as my pink, heart-shaped polymer clay ornament.

on Wednesday though, my father-in-law posted a picture of a statue to the family’s WhatsApp group and asked us to guess who it was. Without VoiceOver Recognition or similar third-party apps, I would have lost out on the fun. VoiceOver Recognition though immediately described the image as a statue of a bear on a water fountain. I replied with this answer in the group and was asked to name the bear. A little Googling revealed that it was “Berend Botje” from the nursery rhyme by that name.

My husband told me that, from the picture, he hadn’t made out that the statue was of a bear. I ran the image through VoiceOver Recognition and Seeing AI, one of the more commonly-used third-party apps for image description, just now and neither recognized it as a bear specifically this time. However, the fact that I “won” my family’s very visual riddle despite being totally blind, definitely makes me smile.

I’m also joining in with #LifeThisWeek and #SeniSal.

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?

#WeekendCoffeeShare (April 18, 2021)

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?

Color Vision

As regular readers of my blog will know, I am blind. I wasn’t always totally blind though. As a child, up to around age twelve, I could see most colors. I could still see some very bright colors until I was eighteen.

When I asked the ophthalmologist at the university medical center to put me on the waiting list for cataract surgery in 2013, some color vision was all I hoped for. The doctor said that the best possible outcome was that I could have hand motion vision, ie. see someone’s hand move from one meter away. I didn’t really care about seeing anything one meter in front of me. If I’d have to hold a colored paper five centimeters in front of me to see its color, that was fine by me. I just wanted to be able to distinguish colors again. Unfortunately, though the surgery was at least a partial technical success, I never regained color perception.

When asked at the rehabilitation program for the blind what we’d be happiest about to regain if we ever regained our vision, most of my fellow clients mentioned some variation of independence. I, though, said that I’d be able to enjoy the colors of nature again. Unfortunately, though technology has come a long way, it will likely never be able to recreate an experience remotely similar to color vision.

I can still, fortunately, see some colors, but it’s in my mind’s eye. You see, I have projected grapheme-color synesthesia. When I touch the characters on my Braille display, they evoke a visual sensation of a color. Each letter corresponds to its own color, though some of the colors are very similar. That probably reflects the fact that I was never able to see the full variety of shades of colors that sighted people can. For example, the V and J are both a light shade of green. I can tell them apart if I see them both, in that the J is a slightly lighter, mintier shade, but it’s hard to describe.

Words also have an overarching color. In case you’re wondering, the colors of color words don’t always align with their meaning. For example, the word “Green” is more red (after the letter G) than green, even though both E’s are green.

I love my synesthetic color perception. It makes up for a loss of appreciation that no amount of technology can compensate for.

This post was inspired by CalmKate’s Friday Fun Challenge with the theme of “Colors”. I’m not really sure whether this rambling piece fits the idea of the challenge, but oh well.

Places I and My Family Have Lived

Today, I once again looked to a book of journaling prompts for inspiration for a blog post. One of the prompts in the first chapter of Journal Writing Prompts for Child Abuse Survivors is to list all the places you’ve lived. There may not be any need to elaborate on them, but I am going to share my thoughts and feelings that come up. For this post, I’m just going to talk about the houses I lived in with my parents. Otherwise, this post is going to be way too long.

First up is my parental house in Rotterdam. My parents bought the house a year before I was born. To be quite honest, I have very few memories of this house, even though I lived there until I was nine. I do remember my and my sister’s bedroom, which had a bunk bed in it. My sister slept at the top and I slept at the bottom.

I don’t remember most other rooms in the house. I know my parents must have had a bedroom, but I can’t remember its location relative to the kids’ bedroom.

I do remember the garden. It was small, but still big enough to play in. It had swings and a sandpit. I loved to play here with my childhood friend Kim.

I also remember the neighborhood. I played in the “thick street”, a square bit of pavement between two blocks of houses. I also often went to the playground across the road from there. When I had lost some of my vision at around age eight, I felt too scared to cross the road.

Like I said, I lived here until I was nine. Then, my family and I moved to Apeldoorn. We moved to a quiet neighborhood. The house we moved into, had a large kitchen-diner and a living room downstairs. We called the living room the “library” because it housed my mother’s huge book collection. Upstairs where three bedrooms, two large and one very small. One was my parents’ bedroom. The small room was my mother’s office, while the other large bedroom was my father’s.

My sister and I each had a bedroom in the attic. I remember not wanting to have my own bedroom at first, probably because I was used to my sister’s company when going to sleep. I eventually grew to like it though. I had the same bed for all of the years I lived here, one of the original bunk beds. My sister claims I got hers and she got mine after the move.

The other two smaller rooms in the attic were a laundry room and a guest bedroom.

We had a large garden. The first summer we lived here, my paternal grandma gifted us a wooden play set that had swings and climbing equipment. I could be found on the swings many hours each dry day until I was at least fourteen.

During the first few years that I lived in this house, I loved exploring the neighborhood. It had at least four playgrounds within a five-minute walking distance from my home. I would often roam about trying to find new playgrounds farther and farther off. When I lost more of my vision at around age twelve, that mostly stopped. Besides, of course I was too old for playgrounds then. I still went to the nearby shopping center regularly, often getting lost on my way.

I generally really liked the house in Apeldoorn. When my parents were trying to sell it and my husband and I were looking for a home, my parents initially offered it for rent to us. We however had the provision that it’d go off the market for a while. Of course, this wasn’t really reasonable. My parents sold the house in December of 2013. I am glad in a way now that they did, as now I have no need to be reminded of the house and my childhood when I don’t want to be.