Some would say, “those who don’t care, don’t matter. And those who don’t matter, don’t care.” But what do you do when your own kin doesn’t accept the fact that you are disabled because of strabismus and that your side effects from VT are serious and debilitating? 

I had another argument today with my mother about the fact that my sound sensitivity has become much worse as a result of VT. So much so that I will spend my birthday alone in silence because I simply can’t be with more than a couple people at a time. Parties, group dinners at restaurants and many outings are out of the question. This will be my second birthday alone in my three years of VT. It’s not that I don’t have friends! I have a lot but I can’t be with more than a couple at a time and even then, if we’re in a restaurant with background music or a loud table nearby, it’s mental torture for me to concentrate on what people are saying. So it’s simpler to be alone. My mom simply doesn’t believe that VT could influence my other senses. It doesn’t help that my mom is deaf in one ear and isn’t as bothered by sounds as I am. Beyond her partial deafness, she doesn’t believe that I have double vision and that I’ve had it for three years because of VT.

I think that since I look “normal” after two operations, it is very difficult for anyone to believe that I am cross eyed. Even my mom who can clearly recall me with my divergent eyes doesn’t accept the fact that I see people with two heads sometimes or that the divider lane on the road doubles when I drive.

Unfortunately, it’s not just my mom who doesn’t believe me or doesn’t take into consideration my limitations, I get it from others to whom I’ve repeatedly told that I can’t drive at night or in the rain and that I have to avoid loud places. They just don’t get it or they easily forget.

Part of me just wants to be quiet and not tell people what they can’t understand or are unwilling to accept. But then I am cutting off a huge part of myself. It’s like being in the closet about one’s sexuality or practicing a religion in secret because one is hiding from the Spanish Inquisition. I think I have more compassion for political prisoners now!

How do you manage to communicate your turmoil or your triumphs when you are inhabiting planet 2D and everyone else is in 3D la-la land and can’t empathize with you? HELP!!!! I’m drowning here.

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36 responses »

  1. Keith Cary says:

    I never got the operation so I definitely don’t look “normal”. Even in my case my friends and family don’t seem to really accept that my eyes have had a dramatic effect on the way I see the world and on the way the world sees me. During my VT work last year I found myself often engaging friends on the subject of how the world looks to me. Most really weren’t that interested. Sometimes they were weirded out but mostly they just didn’t find it too interesting. In retrospect, I think I understand. — One friend of mine is in Al Anon. When she first joined it colored her entire world view, she worked it into every conversation, every bad thing that happened in our town was due, in her view, to a “drunk”. This was certainly the way she saw the world and she is a dear friend but it stopped being a two-way conversation. She was no longer conversing with me. I’m going to try to keep that example in my mind when I am tempted to bring up my eyes more than, say, once…. unless someone asks. — This is really tough, and it’s lonely, but it’s important to cut other people a lot of slack. (Really, not just about our eyes. More slack is needed in our world.) They have their own stuff that they can’t talk about. Oh, the stuff people live with! And we can maybe identify with them a little more because we have our eyes. —- As far as the noisy environment issue, well, I’m with you all the way. I’m certainly not tolerant of it now. It seems related to multitasking and I can’t do that at all anymore and it drives me crazy to have two people talking at me. Yuck.

    • It’s true that sometimes people can get so absorbed in their own crap and that they only talk about that. And then they don’t listen. My capacity for listening has also gone downhill since I commenced with VT.

  2. As I’m about to meet a local behavioural optometrist for the first time, I’m experiencing lots of doubts and uncertainty. I’ve heard both success stories and disaster stories. There’s no guarantee it’ll work and optometrists downplay the risk associated, which is there as proven by your case.
    But there’s a positive part in me that doesn’t accept the simple fact that I’ve got a good eye there and don’t use it.
    Will this feeling be enough to front up to my closest relatives when therapy takes so long and it’s so terribly expensive?
    I’ve told my mother I’m going back to where I was 30 years ago before the operation, turning strabismic again. She was surprised, and worried because, you know, in Italy we care so much for appearances. When I tell that even after the operation my brain never learned how to use my left eye, she simply switches off.
    I tell that to my father and my older sister, they’re both doctors but they haven’t read Sue Barry’s book. So it’s hard for them to imagine what it’s like to be monocular, as it’s just as hard for me to image what it’s like to see depth.
    I think the comparison you make with people with different sexuality is a fair one. We (the normal ones) can’t imagine what they feel but they’re absolutely sure about that.
    I have no answers for you. But I can say I feel your pain and I wish this community wasn’t as sparse, it could help perhaps.

    Silly joke: why did the cross-eyed teacher run away from her class? Because she couldn’t control her pupils!

    And a couple of links:
    http://visionhelp.wordpress.com/2011/01/06/optometric-sons-and-daughters-of-stereo-sue-and-dr-t/#comment-10569

    http://livingwithdiplopia.blogspot.be/2013/01/book-review-suddenly-successful-how.html

    • Emanuele,

      If you do go into VT, you will be entering perhaps the loneliest time of your life. I think your mom got scared that you’d look cross-eyed again. If anything, your eyes will be straighter. I’ve had that documented by both my ophthalmologist and my chiropractor. So you can let her feel better that her dear son won’t be funny looking again. Your sister and your dad my not “get it” as so few medical doctors accept that brain has the ability to change.

      I don’t get as many questions as before about how much money I spend on the therapy. Occasionally my dad bugs me about it or someone asks me if my insurance covers it. But its mostly people being nosy and not because they truly care about how this is effecting my life. So if you have to lie to people and tell them it’s covered by your insurance just so to get them off your back, then that might not be a bad idea. Looking back on how I handled this, I think I would have told fewer people. But I also had no idea that three years into VT, I’d be driving with the left lane doubling and not able to see a 3D movie.

      Susanna

      • Keith Cary says:

        Susanna,
        This may be a little off-topic and techie but I just got a set of video goggles with which I plan to watch movies. Because my eyes are crossed I’m going to have to do some major mods with tiny saws, etc, in order to put the little screens in front of my fovea but you won’t have that problem, your eyes are physically straight. There are 3D settings as well. I paid about $100 on eBay. I think this has potential. Since doing VT I’m able to look out of both eyes without suppression. That came easy to me, but you’re right, it does mess with other aspects of seeing. The problem has been just getting bored with looking at the same still pics mostly made for four-year-olds. Perhaps this might be a way around for me, and for others.

      • Thanks Susanna,

        for anyone who’s interested, this is an amazing series of lectures, it’s all very technical bus very interesting. Lecture 20 in particular.
        You can see vision is such a complex process, involving coordinated muscular movements (largely unconscious), visual pathways, crossing and merging, different layers of monocular and binocular neurons for detecting movements and/or static images. No wonders there are so many cases, and having at least three independent disciplines studying it, that’s not going to help:

        http://arapaho.nsuok.edu/~salmonto/vs3.html

    • Tina says:

      I obviously, am not who you were talking to here – but I feel like I want to run through the screen and hug you . I HATE that people don’t understand monocular vision, and assume that the operation fixed it. Mine’s strictly cosmetic, as well. :\

  3. michaellievens says:

    I know exactly what you mean. Everyone is the enemy… It’s incredible how limited people are in their understanding and it’s an everlasting social minefield. Anyways, I try to manage it but it’s hard… I’ve also complete 2 years of VT now and the biggest road blocks along the way were people. No matter, we will ‘win’ in the end 🙂

    • It’s not so much that others are the enemy. It’s that they won’t take the time to imagine how someone could live in a different way or that they need to lower their voice because their semi screaming is about to drive me mad! I have a friend who is deaf in one ear. I remember when I am sitting near him to ask which is his good ear so that I am sure to sit near his good ear so that he can hear me. It’s just basic respect. If I say, I can’t drive at night, I am not making things up.

  4. michaellievens says:

    Just saw you are almost at 3 years, RESPECT! 🙂 Right behind you!

  5. Tina says:

    I don’t do very well with that. I had my operation, I look normal – but I don’t see in 3D. The eyes just don’t work together. So driving, is a pain. As a rule, I don’t drive the highway. Merging and all, is a nightmare. I usually don’t bring it up with friends, unless pressed, because no one seems to understand. Which, I can’t say that I blame them. I can’t imagine what looking at things with both eyes must look like….

    I don’t think my family gets it. My husband does, to a point. I usually just don’t bother trying to explain if the people don’t get it. It’s frustrating, but there isn’t any sense in trying further, and making myself more frustrated. 😦

  6. Tina says:

    AND, why is it so hard to believe VT would affect other senses? The senses affect each other. You take one away, the others grow stronger. It’s an easy assumption that other issues with senses, could mess with the other 4..

  7. As I’m about to meet a local behavioural optometrist for the first time, I’m experiencing lots of doubts and uncertainty. I’ve heard both success stories and disaster stories. There’s no guarantee it’ll work and optometrists downplay the risk associated, which is there as proven by your case.
    But there’s a positive part in me that doesn’t accept the simple fact that I’ve got a good eye there and don’t use it.
    Will this feeling be enough to front up to my closest relatives when therapy takes so long and it’s so terribly expensive?
    I’ve told my mother I’m going back to where I was 30 years ago before the operation, turning strabismic again. She was surprised, and worried because, you know, in Italy we care so much for appearances. When I tell that even after the operation my brain never learned how to use my left eye, she simply switches off.
    I tell that to my father and my older sister, they’re both doctors but they haven’t read Sue Barry’s book. So it’s hard for them to imagine what it’s like to be monocular, as it’s just as hard for me to image what it’s like to see depth.
    I think the comparison you make with people with different sexuality is a fair one. We (the normal ones) can’t imagine what they feel but they’re absolutely sure about that.
    I have no answers for you. But I can say I feel your pain and I wish this community wasn’t as sparse, it could help perhaps.

    Silly joke: why did the cross-eyed teacher run away from her class? Because she couldn’t control her pupils!

  8. Robert C. says:

    Great post, thanks. My eyes usually appear straight as a result of VT. The few people who have commented have said that it makes me look “intense,” “different,” or even “angry!”

    Only a few people have taken a sincere interest in my VT, one is an artist and the other a neuroscientist!

    I also have noise sensitivity and often wear ear plugs at the dinner table. The sound of a fork hitting a plate hard just about kills me.

    When I tell people I don’t drive they don’t believe me and never remember. I think they think I mean I try not to drive, like in an eco friendly way. Some people, not to be outdone, claim they also don’t drive – by which they mean they only drive to work, etc. I literally have not driven a car even once since the early / mid 90’s! Yet people STILL think I drive.

    Robert

    • Do you see in 3D now as a result of VT? I am glad to know I’m not the only one with the noise sensitivity. I was just in a cafe today and the combination of the espresso machine noise and four men talking was enough to make me want to leave.

      • Robert C. says:

        I do not see 3D in the real world and I can not see any 3D in movies. I do see depth in the red / green tranaglyph cards and I have seen a bit of real depth in the Bernell-O-Scope (prism type stereoscope) – even that little bit was incredible. I see some depth in the clown vectogram (with the polarizer glasses) but nothing with the rope circle vectogram. I have pretty good “out of instrument” fusion now, so for example if I hold my finger up I can see “around” it and everything behind it (this started happening in the last month). I have been doing VT for 8 months or so. Your original question was what do people do to explain their situation to others. To be honest I have basically given up on that and I actually kind of fear that if I do achieve real 3D it will seem profound to me but I will not be able to convey my feelings to friends / family, I think that will be difficult.

      • Robert,

        I’m convinced about two things now:
        1. Empathy really happens when you have had direct experience of someone else’s feelings. It’s hard to imagine what it feels like to have kidney stones, or to give birth, unless you’ve gone through it
        2. We lack a powerful metaphor for describing something that cannot even be drawn because it happens in binocular minds. I’ve started telling people: if you’ve never walked, you would die to walk. I think that’s pretty tangible

        • Emanuele,

          I agree with you on #2. Dr. Sacks said in his first article about Stereo Sue that explaining 3D to a stereoblind person is like explaining color to a blind person. You just can’t.

          However, I believe that I’m a natural empath. And if someone tells me X is difficult for them or makes them dizzy or whatever, I feel empathy for their situation. So I expect the same in my situation and this expectation is what is killing me.

      • I’ve asked the optometrist about how he explains parents what their children with double vision see. He said he puts a prism in front of one parent’s eye to cause double vision, and sometimes they cry!

        • Great idea! And I’ll scream in peoples’ ears while drumming to make them aware of how noises drive me crazy and how their loud voices are irritating!

          Seriously, using a prism to show someone what double vision is seems like an excellent idea.I am glad the parents cry. It makes them aware of how hard it is for their kids.

      • I’ve found this big book from 2008, it seems to cover all cases, I can see some pages on Google Books and search for terms such as “diplopia”:
        http://books.google.co.nz/books?id=jGGROHBFYt8C&printsec=frontcover#v=onepage&q=diplopia&f=false

        I’m thinking at the end of my first cycle of VT, I could almost grab this instruction manual and do it myself

      • I’ve also googled (sorry about so many messages) for “intractable diplopia” and “no potential for fusion”. I’m intrigued now, how do they come to this conclusion?

        http://telemedicine.orbis.org/bins/volume_page.asp?cid=1-2630-2689-2690

        A special type of posttreatment diplopia is worth mentioning. This is the intractable diplopia that can occur after prolonged patching of one eye for amblyopia in the presence of small-angle strabismus, even microtropia. We have seen several young patients with minimal amblyopia of 20/20 in one eye and 20/40± in the other eye who underwent extensive amblyopia treatment with both patching and active stimulation. Such patients may improve a line or so in the amblyopic eye, but in the process the suppression is broken down, and diplopia occurs because nonsuppressed, noncorresponding retinal points now are competing on a more-or-less equal footing in the absence of suppression or effective anomalous correspondence. Because these patients lack fusion potential, they cannot be successfully treated with a prism or glasses. This same phenomenon can also occur spontaneously in adults with amblyopia who change the way they use their eyes. For example, such an individual may be given a new job that requires prolonged attention to fine detail such as reading blueprints or reading fine calipers. This form of “autopleoptics” can cause adult-onset diplopia in susceptible patients in the same way that prolonged patching causes it in a child. There is no adequate treatment for this type of diplopia except time and possibly altered use of the eyes, so that prolonged scrutiny of small objects is avoided.

  9. Robert C. says:

    Regarding the prism idea, I have had people try on my prism glasses and look completely shocked – my glasses make them see double. They can’t take them off fast enough. With a few people I could tell this was what finally made them accept that there was really something different about me!

  10. Nikolajs says:

    I am having my first Visual Therapy setion tomorrow. I am very exited and worried about it.
    I have strabismus since I remember. I had three surgeries and my eyes are straight now most of the time. However sometimes if I look quickly at something or in strange angle then one of my eyes usually left one wonders away.
    My eyes are straight but I always felt that there is something wrong in the way I see the world. I felt big gap between people and the way they live. I always wanted to be like one of them: easygoing, relaxed but I always had strange feeling that I am lack of something.
    After reading Sue Barry’s book I finally found the answer. I found what I am missing and why sometimes I act so different to others.
    I tried to find a visual therapy specialist in London for last three years but i couldn’t find any. So many times I gave up and thought it is only in my head. My mother and my sister were telling me I am cured and there is nothing wrong. Telling me my eyes are straight and that what matters.
    I was very shy and neurotic before. My gaze was always focused but it was tiring me and I could not enjoy life. Then I learned to relax my gaze and body but my thoughts begun to wonder away as well as my eyes. I started to loose attention to people around me, to my work, to the whole my previous world. And all I wanted to run away somewhere quite and natural. Live in a small farm or a village and enjoy small things. Live became very boring.
    Sometimes I wonder is the way I see and the way I think are connected. I feel two persons in me. One is shy and neurotic and very closedminded and another is brave and maybe eger to explore the world but at the same time he is so eliminated from the real life and people around. I don’t know who I am.
    Maybe it is two hemispheres of my brain trying to work together?
    On my birthday and Christmas Day I asked God to help me. Then shortly after I found a link to a visual behavior optometrist with over 20 years experience in London. I spoke to her and got very exited. I am seeing her tomorrow.
    Sorry I didn’t write anything relevant to your problem. I just wanted to share my life as I feel like no one is interested in this part of my life. But it is a big part of me and very sacred.
    I also appologise for writing mistakes. English is not my first language though I have been living in the Uk since 2005.

  11. amberhj says:

    I just wanted to chime in from a slightly different perspective. I have “normal” vision but my daughter who is now 4 has strabismus. She did VT when she was 2. We recently found out that in addition to VT, she needs OT and PT. I’m now convinced that her strabismus isn’t the sole or even main issue but part of a bigger picture wherein lots of muscle control in the body is off, including her eyes. The PT and OT will help set the stage for VT so that it will be more effective. Have you had an OT evaluation including a look at reflexes? I also wanted to say that things are stressful and hard with my daughter in ways that are so hard to pinpoint–I try to explain to people that she struggles, that she has to work ten times harder to do the same things as most other kids. But they don’t get it. Often they give advice implying that if only I was parenting more correctly, things would be fine. They don’t get it. They never will. And as was discussed above I don’t want to go around lecturing people about this topic, though I’m obsessed with learning about it. I just hope I can help her resolve these issues before she gets much older, before she has to feel the weight you are carrying now. I wish you the best and will continue to cheer you on. Stay strong. You’re doing great!

  12. Angelo says:

    Hello everybody,
    I have followed this interesting blog for a while now.
    I only wanted to inform you about this project:
    http://3d4amb.unibg.it/
    We aim to find some software that can help doctors in treating amblyopia in young children, but in the future we may have some exercises for adults. Unfortunately, we have very limited resources and the progress is rather slow.
    Best wishes

    • Angelo, Per piacere, keep us posted, especially if you find things for adults. Grazie, Susanna

    • Ciao Angelo,

      I’m interested too. I’ve looked at three,js, a javascript library with anaglyph support.
      Hopefully with WebGL browsers will eventually be able to output 3D video straight to 3D-enabled TVs without the need for plugins.

      For testing and/or help feel free to contact me: emanuele at ziglioli dot org
      (Any projects on GitHub?)

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