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.

Creating a Sensory Room Experience in My Own Bedroom

It’s been a year since the day center closed. For the most part, it was a good thing for me. I, after all, was often overwhelmed in my day activities group. One thing I miss about the day center though, is the sensory or snoezelen® room. Today, I am sharing how I recreated a sensory room experience in my own bedroom. Since I am blind, I skipped the visual aspect mostly, but I’ll add some ideas for it regardless. That way, you can create a sensory environment for yourself.

Sound

In the day center sensory room, we have a really cool speaker system that’s attached to the bed. It isn’t likely that advanced, so with some speakers at the right position, you may be able to recreate it. I don’t own wireless speakers. However, I found that I can recreate similar effects with earbuds or headphones. I would recommend earbuds for better positioning, but since I don’t have wireless ones, I use my wireless headphones anyway.

I mentioned before that I use an app called MyNoise. This app has over 120 soundscapes and you can customize each individual sound to your own hearing. There are nature soundscapes, but also white noise, Buddhist-like and SciFi soundscapes. I prefer the nature ones.

Like I said, I don’t own wireless speakers, though I might want to invest in some at some point. My phone or computer speakers work okay when listening to music though. There are many calming playlists on Spotify and undoubtedly other music apps too. The ones I love most are Harp Music for Sleeping, Peaceful Guitar and Peaceful Piano. There are also a number of nature sound playlists.

I at one point wanted a music pillow. I may still buy one at some point, but I haven’t yet found one that’s big enough to be used as a sleeping pillow and also works with Bluetooth.

Smell

One thing that my bedroom has and the snoezelen® room didn’t, is an aromatherapy diffuser. I have posted many times about my love for it. Mine cost €40, but they start at as cheap as €15. Essential oils can be a bit expensive depending on the quality you choose. I am obsessed with creating my own blends, so I really like to have a large collection of essential oils. However, if all you want is a nice smell, fragrance oils are also great.

Touch

In the day center sensory room, we had a specially designed waterbed. That felt good, but my own bed is also a pretty good substitute. I usually turn up the head side of the bed slightly.

A thing that’s a true blessing for my senses though, is my weighted blanket. These come in different forms. Some are filled with plastic balls. Mine is filled with sachets filled with granules. It’s a rather expensive blanket at over €500. Thankfully though, my care facility paid for it. With the company we used, you can borrow the blanket on a try-out basis for two weeks for just postage. That helped me make sure it was the right one for me. Mine weighs 12kg, which is relatively heavy considering my body weight of 70kg, but I actually love it this way.

I put a flannel duvet cover over my weighted blanket in winter. When it’s really cold or I need some extra softness for sensory reasons, I use a fleece blanket too.

In addition, I have various soft toys. My favorite is an ordinary stuffed bear. However, I also have a 1.60m large stuffed bear that I got from my mother-in-law for my birthday last year. This one was probably quite expensive. Another of my favorite soft toys, is my sensory cat. This stuffed cat can be microwaved and then gives off heat and a lavender scent.

Sight

Like I said, I am blind with the exception of a tiny bit of light perception. I for this reason don’t benefit from visual stimuli. That being said, I do know a bit about making your room visually appealing to the senses.

My essential oil diffuser works as a night light too. It can be set to seven different colors and I believe also two intensity levels.

Of course, you may want to use your sensory room experience for more than just sleeping. I’m pretty sure in my care home’s makeshift sensory room, the staff put up some form of Christmas lights for the visual effect.

In addition, there are many different visual projection systems. My care facility owns the Qwiek.

Conclusion

I really love my makeshift sensory room in my own bedroom. Generally speaking, creating a true sensory room requires a lot of money. I am so glad though that I could buy some equipment myself or ask for it as a gift. That way, I was able to skip the unnecessary for me expensive things and find things I truly would use. I am very glad that my facility paid for the weighted blanket.

loopyloulaura

Blue to the Blind #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “blue”. The idea is to write about the firsst blue object you see when sitting down to write your post. Well, I am blind, so I don’t see anything blue as I sit here to write. I could be writing about things I know to be blue. The sky is blue. The ocean is blue. Or at least, they’re both seen as blue due to the sun’s reflection on them, or something.

I could be writing about my sensory cat, the soft toy I got for my 31st birthday from my sister. I think the cat is blue. It is filled with lavender, which I know is kind of blue too.

How would I describe blue to a person who’s never seen it? I can, at least, having had color perception as a child, still imagine blue in my mind’s eye. Someone born totally blind can’t. I once wrote a post describing the color green to blind people on my old blog. This was a journaling prompt, just so you know that no actual blind person asked me to describe the color green. Which, I should say, I really can’t.

I mean, synesthesia may be able to help. Blue is a “cool” color. It is the color of the number three in my synesthetic perception. Then again, even with synesthesia, everyone’s perception is different, so that wouldn’t make sense.

Interestingly, there are no blue letters in the word “blue” and the overarching color in the word is orange for the letter B.

I wonder now, does my synesthesia always make words look like the color associated with their first letter. I’m not sure, but the word “green”, even though the two E’s are green, isn’t really green overall. It’s more red with a touch of green. The G is red.

Mondays are green too, even though the word “Monday” has no green letters in it. Fridays are blue and yet again, there’s no blue letters in the word. Isn’t that fascinating?