Total Blindness

Posted on by Astrid

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.

15 thoughts on “Total Blindness”

    1. Thank you for saying that. I hope I’ll continue to see some colors in my mind’s eye indeed. I understand that’s probably not what you mean though.

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  3. Sorry I missed the hearing prompt, I could have done that one! and I don’t consider myself a big writter.

    A few years ago I lost my hearing…well most of it….I am considered totally deaf now, but during a hearing test I can hear a very high pitch in my right ear. It does me no good, but it’s always interesting when I can hear it. Knowing that the sound is really being picked up by my ears is very interesting to me now. To think, I used to have normal hearing.

    Now I have 2 cochlear implants, so I “hear”, but it’s not the same. I hear via a wire that is in my cochlea and it vibrates when the processors pick up noise, that’s how I hear. When I can relate in my brain what a sound should sound like, I can often get it. For example I know my husband’s voice, so I hear him as he always spoke to me. When I meet a stranger, I have no reference, so they often sound a bit strange at first. Even my husband sounded like Mickey Mouse when I first got the CIs turned on, I guess it’s understandable that the new person I just met may have a tone that is not really their voice. They told me about this but I always thought, how would I know if they should like what I hear or not? I figured that out when I heard someone I know speak to me, but I didn’t see them at the same time. I had no idea who it was. When I saw the person, I got it! I can often pick up accents by the placement of the lips, but that’s a different story and one totally useless during these days of wearing masks.

    As I said, I wasn’t born with hearing loss, I got a disease (Meniere’s Disease) and over the progression of it, I lost my hearing. I’ve been deaf since 2013, doesn’t seem that long…well some days it feels like it, or longer.

    My deafness is not silent. I have tinnitus, and can hear a wide variety of noises, they just aren’t coming from the outside. Right now I hear a low rumble, earlier it sounded like a helicopter was landing in my house, tonight I might have music. I never know. It is much louder when I don’t have my CI’s on….thank goodness I they lessen it sometimes it’s nerve wracking.

    Well I left you a long comment!
    Thought I’d share with you my deafness story since you so wonderfully and bravely shared your blindness story.
    Losing any sense comes with a wide variety of challenges. I’m incredibly lucky that I have the technology to help me hear, even if it’s different. (BTW, that residual hearing, did nothing for me when a VERY LOUD smoke alarm went off in my ADA hotel room. Thankfully, my husband was with me, and it wasn’t really a fire. But it still scared me….hmmm, I wonder if my brain just thought the noise was more tinnitus so it didn’t wake me? Never considered that.)

    You are you, no matter how much you can see, or hear.
    No hearing has made me less sociable, I was much more isolated at first, but I’m getting better about that. Not being able to communicate is really, really hard. Sure I can talk, but not being able to hear what someone else says, you can’t have a conversation. There’s a lot of misunderstandings, a lot of embarrassment, and a lot of missing out. I don’t have the best of vision, not sure what it is now, 20/200 maybe closer to 20/300 not sure now. I only know that I need new glasses. But they can correct my vision to almost normal. My biggest fear now is losing my sight. Losing both hearing and sight? I don’t think I could cope. It’s terrifying.

    But lowing one sense? We can do this! You’ve got this! You’ve had it all along. There was literally no one to help you, yet you survived! You thrived!

    Good story, looks like it sparked another.:-)
    xoxo

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    1. Thank you so very much for sharing your story. I am terribly scared of losing my hearing too. I mean of course people live with deafblindness everyday, but it’d be very hard. I thankfully still seem to have pretty close to normal hearing. Not that I’ve had it tested, and I really should since I do think my hearing is decreasing.

      Thank you also for explaining how CIs work. I had no idea they cause you to hear things in a rather distorted way. Really interesting!

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      1. Thank you.

        I think it’s a lot harder to adapt to deafblindness if it happens later in life. We know what at least one of the senses do and that’s how we relate to people. Losing both, has to be …. devastating doesn’t seem like a hard enough word.

        I should have pointed out that different people hear differently with CIs. Some hear pretty normal. I met a woman who had no issues, even rarely in crowds! That is pretty rare though. Some only hear clicks, or other nonsense sounds. I think I’m average. I recently got new processors and hear much better with them! So I think that could make a difference too.
        Since hearing people can’t hear what we hear there’s no real test to see.
        I’m just so very grateful for mine. And I’m often grateful that I can take them off 😆😜 Unwanted sounds…. Begone!

        Have a lovely night.
        Good chatting with someone who understands losing a sense, and how it’s not like people think. 💕

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        1. I’m glad you appreciate both your CIs and the ability to take them off when you don’t need/want them. As for deafblindness, I think indeed it’d be easier to adapt to when it’s all you’ve known. Then, still, communicating would be very limited or so I guess, since even though they may be able to learn tactile sign language quite easily, it still requires someone being within arm’s reach to communicate. Anyway thank you so much for sparking such interesting conversation.

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    1. Thanks so very much! No need to feel sorry though. Of course, it’s hard, I won’t deny that, but I’ve lived with very little eyesight my entire life.

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