From Surviving Strabismus to Building Awareness: Michael Lievens’ Vision Therapy Journey

Denise introduces Michael Lievens, whose website strabismusworld.com was one of the very few blogs available when she began her own vision therapy journey. Following Michael’s experience helped her feel less alone as she navigated vision therapy herself.

Michael shares how he developed accommodative strabismus at age three due to undetected farsightedness. Despite having “20/20 vision,” he struggled functionally and ultimately underwent three eye surgeries, which left him with constant double vision. With no resources available in his native Dutch, Michael began searching English-language materials and eventually discovered vision therapy (and Susan Barry's book, Fixing My Gaze), marking a turning point in his journey.

In 2017, Michael founded a Belgian nonprofit organization focused on strabismus awareness and education. One of its major projects was translating Fixing My Gaze into Dutch. He also created the Dutch-language website scheelzien.org, a Dutch YouTube channel, and Facebook communities in both Dutch and English. His organization hosts annual patient meetups, inviting VTODs (vision therapy optometrists) to share information and connect directly with patients.

Proceeds from the Dutch translation are now being rolled forward into Michael’s latest project: translating Fixing My Gaze into French. He is also developing a French chapter of his organization to serve the French-speaking regions of Belgium, France, and other French-speaking territories. Michael is deeply passionate about sharing accurate, hopeful information about strabismus and available treatment options.

This episode is an honest and thoughtful look at long-term vision challenges, informed choice in care, and the power of patient-led advocacy.

Content note: This episode includes discussion of mental health struggles and a past suicide attempt.

Support the French translation of Fixing My Gaze
https://www.indiegogo.com/projects/help-to-translate-fixing-my-gaze-into-french

Website
 https://strabismusworld.com

Facebook Community
https://www.facebook.com/search/top/?q=strabismus%20world

Connect with Denise Allen:

Website: https://healingmysight.com

Healing our Sight Facebook Group: https://www.facebook.com/profile.php?id=100063570817348

Click the link above to message me directly. It comes to me as FAN MAIL! How great is that? Just click on the place that says, "If you liked this episode CLICK HERE:"

Transcript

Denise: Welcome today to the Healing Our Sight podcast. I'm your host, Denise Allen. I'm very excited today to introduce you to Michael Lievens, who I started following way back at the beginning of my journey. He was the one of the few people that was writing a blog about his vision therapy journey. And I really wanted to figure this whole thing out. And he had a lot of helpful information on his website. And so, since then I haven't been seeing as much from you, so. So that's why we wanted to bring you on. Go ahead and tell people a little bit about you.

Michael: So, my name is Michael Lievens, I'm a Belgian, a Dutch speaking Belgian. So, Belgium has two languages, and the northern part speaks Dutch. And I'm Flemish, which is Dutch speaking Belgian, basically. And I developed strabismus at the age of three because I (had) accommodative strabismus. So that means that I was far sighted and it wasn't detected in time by an eye doctor. And I developed symptoms like, I don't know in case of toddlers, what exactly the symptoms are. I guess I didn't react normally in class and my mom thought there's something wrong. I wasn't developing or learning the same way as other kids did. So, she took me to various specialists, like eye doctors. She had tests, like a battery of tests done on me to check if I was normal cognitively and that turned out fine. She also took me to a neurologist. But ultimately. So, the most eye doctor said he sees fine. He has 20/20, the classical story. But it was only the third eye doctor who detected the farsightedness. I guess he used maybe eye drops like the atropine drops. And then ultimately, I finally got glasses for farsightedness, but by that time I already developed the strabismus. So, the glasses onto themselves didn't correct the eye alignment anymore. And that led to an orthoptist patching one of my eyes, which corrected the acuity in the left eye or the lazy eye or the amblyopic eye. And that made me ultimately an alternator. But it didn't really help with the eye teaming, which is a big problem, as you know. That's why you need vision therapy as opposed to just patching. Patching can be like part of the vision therapy, maybe in a limited capacity, but it shouldn't be the only treatment. You should have more broad treatment to repair the eye teaming and the eye alignment and then get better perception, start using both eyes together and develop stereo vision. But so, all of that didn't happen. And then I developed problems with learning and reading and so on.

Denise: Yeah. And I wanted to note, even though my strabismus occurred around the same time, your situation was very different than mine because you were farsighted and I was nearsighted.

Michael: Yeah. It seems. Well, I'm well aware that not everyone who has strabismus has the same experience as me. Like not everyone has reading or learning difficulties. But it seems to be the case that people are farsighted in combination with strabismus that often they have more. Well, correct me if I'm wrong, someone out there if, if there's an, an optometrist listening, but it seems to me that these people maybe have more reading or learning difficulties because nearsighted people have kind of like built in reading glasses. Right. Your, your eyes are made to read or to look at short distances, whereas farsighted people are comfortable looking in the distance. So not doing near work or like work at a short distance.

Denise: Yeah. It makes near work very difficult.

Michael: Yeah.

Denise: And they put me in bifocals actually as a three-year-old. So that kind of adjusted for the additional pressure that I was feeling with the, you know, near work.

Michael: Yeah. During my research. Research, I even found that there are like actual academic papers kind of putting out the hypothesis that perhaps farsighted children are not as intelligent as nearsighted people. So, they first kind of doubt your intelligence before they actually come to the logical conclusion that it's just easier for near sighted people to learn at near distances or short distances instead of like jumping the gun and thinking about the intelligence. Right. So. Right.

Denise: Well, they test intelligence just with near sighted work, you know.

Michael: Yeah, exactly.

Denise: That's not the way it should be tested.

Michael: Yeah. I think later on they actually got. Got it that maybe farsightedness is, makes it harder to do near work. So that's why they might be academically less developed these kids or even intellectually less developed or slower to develop. So. Yeah, but so in my case the reading. Learning how to read was very difficult. So, I couldn't switch comfortably visually between my desk and the blackboard, for example. That's why I kind of like first of all, it was very hard to focus, and I was kind of confused spatially, I guess it's hard to remember. And so, they noticed I couldn't learn how to read normally in the class. So my mom actually took me under her wing and gave me like nightly lessons and that then she noticed during these nightly lessons or evening Lessons that intellectually I can learn how to read fine, you know, like if you pay attention to me or if, yeah, like keep my attention and see if I'm actually visually focusing on what you're trying to teach me. But so that fixed like the knowledge part of the problem. So my mom uploaded, let's say the, the knowledge into my brain in a different visual way. But like my vision was still dysfunctional. And so, the learning in the classroom would never be easy or never be as easy for someone who had normal vision. And even my reading, even though I learned how to read, my reading speed was like exceptionally slow. Maybe like 20% of a normal person. I once tested it. Even as a teenager you have these kinds of books where you can test your reading speed and then they kind of compare it to the normal speed. Well, I did it on my own, but so it's kind of an informal test. But then I noticed, wow, I'm really abnormal. Let's say like my reading speed is exceptionally low, but comprehension was always good, but reading speed was just very slow. So even as a 10-year-old, for example, I would be doing homework the whole evening, which is very weird. Right. But so, I would always kind of make it just by working super hard. And I would even like often be the top of my class. But that's just because nobody knew how much time I was putting into it. Right. And then at home they didn't really question. I don't know that some. Yeah, my father really didn't. He was always working so he didn't really know how much time I was putting into that. My mom, my mom, I don't know, she just thought I was kind of slow. I don't know. But either way, nobody made the link between the vision problem and the, and the cross crossed eyedness, which to me would be very obvious. Right. That vision has to do with reading. And everyone just kind of accepted the situation because also the eye doctors never really made the link between the vision problem or the strabismus and maybe the learning problems. And the teachers also don't know anything about this condition or how it can affect your learning. So nobody ever posed any questions. And as long as it seemed that I was doing fine and getting the grades, things just went on. Yeah. As, as they were.

Denise: Right. And then at what point did you decide that you needed to do something different?

Michael: Well, so this overcompensating academically, it kind of worked until let's say like 14, 15 years old when the academic load really became too heavy. I couldn't keep doing the whole night homework style. And I also felt like my neurological adaptations to my vision problem, the suppression. I don't know, maybe my eye movement movements got more jittery or something. But it didn't work as well as it used to be. As it used to work. And so especially for math, which is very visually intensive. Yeah, it. It just didn't seem sustainable anymore. So, I asked my parents, can I change courses in the schooling system to like a course? Yeah, well, we have our own kind of system, but there are courses with more math and more science and, and less math and more language studies and all these things. So, I asked can I focus more on language, less on math, for example? But then later I figured out it's. It wasn't really like a voluntary choice, was just kind of avoiding the visual load. Right?

Denise: Yeah.

Michael: But anyway, my parents thought. And also, the teachers thought they. But you're good at math, so why don't you continue the math? You're just. You don't. Just don't want to do it. It's a stupid choice because it's going to limit your options later on in the, in life and in the, in the further education. So, they really kind of forced me to continue and even I had to change schools because they thought it's the environment or something, you know, it just made everything worse. Also, the vision problem kind of eats away at your confidence, right? Because you kind of know you're, you're not stupid, but still you have to work so much harder than a normal person. So, then you kind of start to doubt, like, is it me? Am I really not stupid? Or. And if it's the visual problem, why is no eye doctor kind of telling me about this connection? Or why is the teacher not getting it? Or why are my parents not cutting me some slack because of it? Because in the end, if nobody tells your parents, they just think it's your personality or a character that's the problem, it's not your vision. So, then they start blaming you personally, which causes a whole host of new problems. But anyway, so they tried to change, to make me change schools and continue the math and all this heavy academic load. And then, well, this onto itself is a big problem. But I also felt like I cannot live like this any longer and I cannot continue this way. You know, like even if I can get through this course and maybe graduate, there's something with my vision that will impede me to have a fully normal life, to work like a normal person. To have a family life like a normal person, to do things normally. So, I already felt it at 15 years old. So back then this feeling led me to actually do a suicide attempt. And I, at the time I had my wisdom teeth removed and I got like this, this massive amount of painkillers and I like took them all. But it, there was a, there was a big con. Like there were also problems at home. There were many things at the same time. So anyway, then eventually they let me change school. So schooling got a little bit easier. Like I, I focus more on languages. That's why maybe I speak many languages now. And it's more like with languages you can learn more with a, with your hearing. Like it's more of an auditive learning style. So that kind of helped. But then I finally graduated like high school and already felt like this was like, kind of like a miracle. I, I did it. But then, then there's the new problem, right? Like either you have to start working or start higher education. And I obviously I, I loved studying, actually. Even though the reading was so hard. I love to intellectually grasp new concepts and yeah, it's very counterintuitive. Even though I had such a hard time reading, I still loved reading. So that's why I find like I got through all, all this studying with all the pain and with all the vision problems.

Denise: Right.

Michael: And at university I chose actually if I had like normal vision, I think I would have gone for a technical course, maybe like engineering or computer science. But I felt like obviously it's not going to work. Right. I already couldn't do the math in high school. Yeah, like the full vote if I go like full humanities. I didn't feel like that. Yeah, like, yeah. Anyway, it wasn't for me fully so I went like a kind of intermediate like between math and humanities, which ended up being economics. And everyone kind of likes this course because they think you will have a good future. Like nowadays I'm not sure if it's still the case, but back then they just still thought it was like, you're going to be fine. And so, then I started doing that and obviously the load, the academic load was huge. And I just basically, to survive at university or to succeed, I was just basically reading, eating, sleeping, reading, eating, sleeping. And I went to, to class like the minimal amount because I would just be visually confused in class and at home I would still have to read the book anyway.

Denise: Oh wow.

Michael: Yeah. So, what's the point? Like I can just spend all my time trying to absorb the book, which Is ultimately what you need to know.

Denise: The lectures weren't helpful for you then?

Michael: No. You think maybe because it's more of an auditive way of learning, it would maybe help. But in the end, yes. It's kind of hard to understand. But back then I was still very much a visual learner, even though my vision was impaired or limited. And I would even say like trying to listen to the teacher would then confuse my vision even more. Right. So, I was trying to focus on one of my senses at the time. And either you try to focus on your hearing, but then like in math class, which with economics in the beginning, there's still lots of math. So, then you're, you're not really. Yeah. You cannot just do it by listening or you focus on your vision, but then you're missing what the teacher is saying, so you might as well try to read the book at home. So, but, so that, that kind of worked. But yeah, I had no social life. I had no, I was just overextended basically. And this over exhaustion really broke down the, the little visual adaptations I still had. Like my suppression of, of one eye because I was an alternator. So, I would even either look with the right eye and suppress my left eye or either look with the left eye and suppress my right eye. But for reading mostly the dominant right eye. And so that like really, that suppression was breaking down. So, I started having double vision. My eye movements got. So, I got so tired that they became jittery, which then makes suppression even more difficult. Yeah. So, after one semester I got double vision. I freaked out. I went to my eye doctor that I always went to. He said there's nothing really we can do about it except maybe we can try surgery. And I was just, I just wanted to continue my studies. I didn't want to give up. Also, I felt if I failed, my parents wouldn't allow me to keep on studying or give me a retry or. So, there was a lot of pressure on me.

Denise: Yeah.

Michael: And so, I just said, okay, if that's the only option. Like, yeah, it has a good reputation. The practice looks very nice. They have a lot of money. So, you think like I'm, I'm in good hands. Right. But the eye muscle surgery turned out to be very counterproductive and very damaging to, to my personal situation in the end. And I went from being a. esotrope so cross-eyed to being wall-eyed after the surgery. And not only wall eyed, but also instead of having like a fixed strabismus angle, I became non committant. Which means that depending on the viewing direction, my angle would change from eso maybe to exo, which makes controlling my vision and controlling the suppression and trying to have a consistent view of the world very difficult. So, I wasn't even thinking about like stereo vision or whatever. I just wanted to have a single view, trying to read more comfortably. Also, after this surgery, I couldn't even read anymore without patching one eye because I had like horrible double vision, uncontrollable double vision. And the patching gave me like the worst migraines on top of the double vision because of the tension that all these visual and visual problems and the headaches generated. I also got like jaw cramps, which is very painful after a while, and even ear pain. So, to solve air quotation, solve these, these symptoms, I started taking a lot of paracetamol like every day or like one gram. I used this blue ice packs that you usually use to numb the pain if you hurt your knee or whatever. I started using them on my head to numb my head basically. And when I would have to go for an exam, I would, before the exam, before I went to the exam hall, just down one glass of wine, which made me numb enough to still focus, numb enough to forget about the pain for a while, but still not that numb or tipsy that I couldn't, like I couldn't do the exam anymore. So yeah, obviously this is not a healthy situation. And in the long term you already know you're not going to be able to work in a normal environment like this because I was just locking myself up at home to study in a weird situation with lots of pain, with lots of side tools, let's say like this ice pack. But let's imagine that you have to wake up in the morning, go to an office, you already get there, dizzy, double vision, you have to read, but you cannot use your iPads and your ice pack and you're kind of breaking down anyway by noon. And then you would have to talk to colleagues and, or clients or whatever. It's not gonna, it's like there's no way that it's ever gonna work. So, after this surgery, I went to see all the other specialists in the region and you would think we're a developed country. It's not like a, somewhere out in the world like a developing country where there's nothing. It's pretty much like the US but a little bit different. Right. So, you would expect you would get top notch medical care. So, I went to see all these surgeons and basically they saw what happened in that previous surgery, and I think they just didn't want to touch it anymore. And they just thought, yeah, we cannot help you anymore. This is what it's going to be. You have to live with this. Because maybe they were scared of being sued, maybe, and they didn't want to touch the mess of another doctor. Basically. That's what I thought. But there was still one, a surgeon in Antwerp. And even though I'm not a big fan of surgery, obviously, but I must admit that he actually got the guts to take on the case. And he did improve with the next surgery, some of the symptoms, and he gave me back some control over my eye movements. So that was great. But then basically I went back to the situation before the surgery. So, I went through this whole medical mill.

Denise: So you had, you had three surgeries though, right?

Michael: Yeah, actually, yeah. So, I already had one in high school. After, after the suicide attempt, I got already one surgery. Then I got one at 18 years old, which was a horrible one in university. And then I got, at 19, I got the last one, the third one, which gave me back some control. So, I was back to square one. I still, I got a, I had a little bit more eye muscle control or eye movement control back from before that horrible second surgery in the first year of university. But my reading was still horrible. I still had the symptoms, the headaches, the jaw pain, the ear pain even. And I still felt like just what I described earlier, I'm not going to be able to function in normal society. And I was already getting close to graduating at that point. So even with all these problems, I still always passed, my grades, but my grades were going down, but I still always had a passing grade. So. Yeah, also, I was living in a dorm room, so, I wasn't really. My parents wouldn't see all the pain and all the problems I was going through. So also there, that was like a problem waiting to happen later. Like, they, they saw the grades, but they didn't see me and what I was doing to get them right. So, they probably thought I like partying or whatever or just slacking, you know. Yeah, but it's a big problem if you don't have like a close relationship with your parents or you're not communicating well because you have long, long standing problems maybe between you and your parents. This is like a, a nuclear explosion waiting to happen. Right. Because I'm like crashing and they don't really know what's happening and they just think you're like, I'm not doing my best, which is obviously not the case, right? And then so that before the last year of university, I started finally looking for information in English because I was again on the verge of another suicide attempt. Like, what am I going to do, right? In one year, I have to be fully functioning, independent, working, basically an adult, right? So, I was freaking out. I was obviously crying many, many days.  I wouldn't. The situation looked hopeless. So ultimately my English developed to a point that I could look for information about strabismus. And also, my knowledge about strabismus because of all these visits to doctors started to develop also to a point that I could combine the English and the strabismus knowledge to look for solutions. So, I just googled and maybe after half an hour or an hour, even with the bad vision, I found various sites on vision therapy. And I found the book of Susan Berry, Fixing My Gaze, which actually maybe had come out only two years earlier. So, I was kind of lucky that it had come out because I wouldn't know what might have happened if I hadn't found the book. It's really a big question mark. Could have gone south really badly. And that kind of opened up like I sort of discovered vision therapy. I read the book, I thought, oh, this lady can do it in one year and a half. And she also had three surgeries and she was esotrope, like me alternating esotrope. So, oh yeah, so let's find some behavioral optometrist to specialize in vision therapy. And interestingly, there are quite a few in, in Flanders or in Belgium. So, I found out there was one in Antwerp, like 20 kilometers from where I grew up. So. And he had been practicing for many, many years. So, I could have been helped as a child before, which was very upsetting. So when I found Fixing My Gaze, I was very happy to find the information, but I was also kind of upset that nobody told me about this before and that I hadn't been treated as a kid and I could have been spared all these surgeries and all the pain and all the reading problems and my life could have been totally different, Right. And so, then I started the vision therapy with He Naggles, now he's retired, but he kind of introduced vision therapy to Belgium. Like he was one of the, the OGs, like the old school guys who brought it, who stood like, who did. an extra training in the US at covd. And then he kind of brought it, like introduced it to Belgium. Nice way back then. But when he first examined me, he basically said your case is so chronic, long standing recent surgeries, I don't see much improvement in your future even if we try. So, I don't recommend starting vision therapy. But I, yeah, I described the situation earlier and I just said we have to try something. I cannot just go home now and wait to wait to die basically. So, I said I'm gonna come, I'm gonna pay, you're gonna give me the training. We're gonna try. We're gonna do a evaluation after six months and we'll see what the result is. And so, then we started after my insistence and after six months,  my strabismus angle had improved significantly. I think I started with 14 degrees of, of ESO in the neutral viewing position because I was non committant. So, we were always measuring the neutral straight looking neutral position. But it would vary depending on my viewing direction. But so, we would start with 14 degrees, then after 6 months 8 degrees and then after another 6 month 4 degrees and after another 6 month 2 degrees. And like we went all the way back, like all the way down to zero. That was after maybe like two years. So that was positive. And then the, the constant double vision started disappearing. So that was very encouraging. And but that's also the easy part. You can, that's like the mechanical part. You can measure. It's much a much bigger question mark if you will ever acquire maybe stereo vision. Right. You, you cannot even like even if you do an MRI on, on your brain, there's no way you can actually determine is this guy eligible or will he acquire stereo vision at some point. So, I kept doing the vision therapy for another three years and even like the last year said, you know, you have the knowledge by now. Like because I've been reading many, many manuals by, by then and you have even the tools. I, over the years I bought lots of tools, vision therapy tools. So basically, go home and continue by yourself. But also one of his vision therapists who is also an optometrist started her own practice. So that was the one who was actually training me on a biweekly basis. So, I kind of followed her to her own. Was a lot of driving, which is also exhausting for me.

Denise: Right.

Michael: Because my driving is actually limited to two hours maximally. So, if I have to go there one hour and a half to, to see her and then one hour and a half back, I'm so exhausted when I come back that it takes another day of recovering, for example. So, in the end you have to kind of, yeah, make a trade off, like is it worth going to see her versus is it actually damaging?

Denise: Yeah.

Michael: But after five years, I decided that I would stop going to in office vision therapy sessions, but I would try to maintain by myself, which I'm still trying to do. But it's very hard to motivate yourself. And I have kind of systems to keep me going. It's kind of like if you know Duolingo, it's like a language learning app. You have like this kind of motivation to keep your streak. Well, I also made something like that for vision therapy.

Denise: Nice.

Michael: Yeah. Well, it doesn't always work, especially now that I have kids, but I'm doing my best. And maybe one day I might still acquire stereo vision, but I actually should focus maybe more on vision therapy. But I'm also doing a lot of vision therapy or strabismus awareness work that requires lots of screen time. And I'm sure if I would diminish the screen time, it might help with the vision. I already noticed if I, when I took one month off of, of like any screen time because I had to take care of my, my baby girl, then my vision kind of became easier and more comfortable just by not having any screen time.

Denise: Yeah.

Michael: But also there it's a trade off because I love doing the, the awareness work and the vision therapy information work.

Denise: Yeah.

Michael: So, it's between, you have to make a tradeoff between your intellectual curiosity and your passion and, and your visions often times. And it's difficult.

Denise: I feel that too. Yeah. When, when I spend a lot of time in front of the computer, like for instance, editing the podcast, my vision doesn't respond really great to that, you know, And I start to feel a lot more stressed too. So. Yeah, I can, I can totally see where you're coming from there.

Michael: So when I ultimately finished vision therapy officially, let's say, and I started doing home sessions or I kept maintaining my vision therapy, I also thought like, yeah, earlier you read my strabismisworld.com website, which was a blog about my own vision therapy and my research in English because I loved like the English language community around vision therapy, which didn't exist in any other language. Right. Like us And Canada is kind of the, the heart of the vision therapy world. And I was lucky to learn English in time to kind of access all this information.

Denise: Yeah.

Michael: But I also felt kind of cut off being in Europe, not being able to participate in maybe many of the COVD or many of the. Yeah, the, the action that's happening there. So, I thought, how can I Locally, maybe create my own vision therapy world. Like integrate myself in society by helping other strabismics, find out about vision therapy and give them basically the information that I was lacking as a child that could have helped my mom to take care of me when I was a kid, or can still help adults like me who are stuck, but maybe didn't get the chance to learn English as much as me or. Yeah, just had a different, different trajectory in life that led them not to find out about vision therapy. So, I made this Dutch language website initially and I made like a non-profit called Skills In Punt or Skills in just means strabismus. It's the Dutch word for strabismus. Strabisme is also like the medical term. But skills in is the thing that people would Google. So, I wanted to have like the name that would pop up immediately on Google that parents could contact me and find me.

Denise: It would be like if we typed in lazy eye in.

Michael: Yeah, exactly.

Denise: Right.

Michael: Yeah, yeah. Or lazy eye is also a search term that's often used. So, I try to kind of optimize my website for those two things that it pops up. And the YouTube channel as well.

Denise: Right.

Michael: And so when I officially did the paperwork to start the nonprofit and did the first fundraiser for the Dutch version for the Dutch translation of Fixing My Gaze, because that was the book that opened up, opened up everything for me, right Then I thought, how can, like, this book is so amazing. And some people, even though many people kind of speak English, they're not comfortable reading a whole English book that's kind of technical. So, I spent like, first of all, we did the fundraiser and it was amazing that I didn't know if there would be any response to the fundraiser. And we were going for, I think back then, $4,000 or something, or €4,000. And I was very happy that. So, half of the money basically came from North America and then half of the money from Belgium and then half of the money from the Netherlands because also there they speak Dutch. Right. So, they speak Dutch in the Netherlands and in Flanders, which is a part of Belgium. So that was. That was very heartwarming. And yeah, so Leonard Press contributed, his son contributed. Susan Berry herself contributed. Many strabismic patients that I met through the Facebook community over the years contributed. And I was. So, I was thinking like, they don't have any interest in this Dutch book. Right. I would, I should try to involve Dutch speakers because they're ultimately the. They will benefit from this project. But I was so happy that also the American Community and the Canadian community came through just to spread awareness about this. So that was. I was so happy because I was just like a lonely guy starting a non-profit with nothing, just me alone. I didn't yet have any members or whatever. So, then we succeeded with the fundraiser and I spent two years myself. So, I have this reading problem. So, it's very hard for me to translate the whole book. But I, over the years I learned how to use reading aloud software and kind of like accessibility features on my phone and my computer to help me translate the book. But still it took two years and then it came out and I was very fortunate that by contacting the national radio they invited me on a program. It's a program about books, but nonfiction books and usually about science. So, this book would be perfect for it. And I kind of stressed the societal importance and yeah, so basically, I lobbied to get onto the program. I got on, I got this whole platform. It was a great interview, even though I was super nervous obviously because it was my first kind of big media interview. But then it really had an effect and immediately 150 books were sold or something. So, I had this massive email list then from this, from selling the book.

Denise: Wonderful.

Michael: Well massive for me at the time, like it was. Wow. And then using this email list I also started doing for example, annual meetup meetups with strabismus patients from Belgium and the Netherlands. And we always organize them where I live in Brussels. But even people from the north of the Netherlands, which is like four hours driving, which is not. That might not seem much for an American in Europe. It's like the other side of the world basically. So, I was very charmed that they would come all the way and stay in a hotel and attend my kind of amateuristic meeting, let's say. And I would be like cooking the whole week to prepare the food. So, because we're doing this like bootstrapping, right? There's no catering, there's no nothing. There's just me. I sold some books. I sent some emails and then I'm just cooking some spaghetti and getting some cakes to have a meeting. And I invited a behavioral optometrist to speak and give like some, yeah, some presentation. And I think the first year the optometrist presented Vivid Vision because it's a very flashy topic, right? Like virtual reality. And it's this new company who wants to treat their business and amblyopia with virtual reality. So that was great. Like people loved it. They came. I, I also gave a short speech which was also kind of nerve wracking. But the, the. It was amazing how excited people were to come and I got lots of energy from it and so that gave me like the, the continued motivation. And we did the second year and I think this year maybe we're gonna skip a year because I'm gonna have a baby next month, so it's gonna be too exhausting. But maybe spring next year we're gonna do another one. And now it. So, Belgium is one of these weird countries that has two languages. So, in the north there's Dutch and in the south there's French. So even though I'm not a native French speaker, my French is pretty good. It's similar to my English, maybe a little less, maybe a little more. Well, my English is pretty fluent because I speak it every day with my wife. But the French is also at this point pretty fluent, but I'm not a native speaker, so I can. So now we have the plan of making a French version of Fixing My Gaze, but I cannot do all the translation work myself. That's why I need to hire some kind of help, maybe not to translate the whole book, but at least for the proofreading and make sure it's like a quality product. So, this time we need a higher budget than for the Dutch one. But all the proceeds of the Dutch version are going into the French version.

Denise: Oh, wow.

Michael: Which is 8.8k. So €8,000 are going straight back into the new book. But then still it's not enough according to my calculation. So, we're trying to, with a new fundraiser, Try to get 6k this month and we'll see how far we can get. Even if we don't make the, the ultimate goal. We want to try to get as close as possible. Yeah, the more, the more help I can get, the better the product will be, I guess though, right?

Denise: Well, I think that it's interesting to note that people like you and me who have had a long journey to get to at least a stable place in vision, or for me, you know, stereopsis, are more likely to feel strongly about sharing it. Right. And so, I love your passion and, and how your non-profit is building on the previous things that you've done. You know, you're taking this Dutch translation and rolling it into the French translation and really just moving forward with that to reach as many people as you possibly can.

Michael: Yeah, I'm always trying to think a little bit strategically, like what. What's the best way to first of all help the individual patients? Because I was helped tremendously by the book. So, I feel like I need to make this same experience or same book accessible to as many people as I can, but also just. It's a great book. Like, it's endorsed by like Nobel Prize winners on the COVD It's like a renovated. She herself, Susan Berry, is kind of a renovated neuroscientist. And the foreword was written by Oliver Sachs, which is also like a very big name. Right. So, it, it's the best way to get a foot in the door in, in the, in the space of vision therapy and to kind of get the word out. That's why, for example, I didn't opt initially to write like my own book because I don't have the big name. Right., I'm not a neuroscientist. Yeah. Well, my personal experience is also valuable, but it's not. It's also the book Fixing My Gaze has like, at the end of the book has like 70 pages of references. Like, I, with my vision, I can never get all these references together properly. Right.

Denise: So the fact that she's done all of that work, that academic work, makes it a super valuable resource for people. I think that knowing other people's stories and knowing that it doesn't just happen for her is also valuable though. And, and that you're, you're spreading that just with your passion in, in providing this service, though. And then you have your Dutch language resources and some English resources that you still provide to people.

Michael: Yeah, yeah. The, the Strabismus website. I will always keep it online because it's also a memory for me of these hard times, you know?

Denise: Sure.

Michael: And on, on the Dutch side. Yeah, we got like. So, we got the Dutch version of Fixing My Gaze. Then last year I wrote kind of. So, I did write a small book myself, like a parent's guide. It's called the First Aid Guide to Strabismus and Lazy Eye. Like an orientation guide for parents and patients. So, if you first get confronted with the problem, kind of, what do you need to know? And that kind of rolls into Fixing My Gaze, if you want to go get even. But if you want like, quick answers, like, is surgery the only way. No. And then I give like all these useful statistics and kind of why is stereo vision important? Right. Like, because normal people with normal vision, they don't really even know why it's important. So, you need to give them like a quick explanation in one page or maybe two pages why it's important and why that's maybe the ultimate goal. For your kid to get treatment that it's not just cosmetic, it's like, it's functional, performance based. And this is a very big milestone in getting to the point the right vision. And well, so that little book has all kinds of like fast answers. It's only 80 pages, so it's digestible. And then we got like the YouTube channel where I make my own little short informational videos about surgery, about vision therapy, about my own experience. So that there's like a five-video series. If, like, if you watch all of them, it's like two hours. And it's also like a memoir for me to remember because I also forget as I get older. So, remember Dutch though.

Denise: Or that's.

Michael: Yeah, that's in Dutch though. I might in the future make an English version. But yeah, so I put all my X for the moment in the Dutch organization to make it as big as possible to have a big impact locally. And my idea was to have a Dutch language kind of optometric extension program that gets the word out, provides information and maybe refers you to the right practitioner locally. And then also on the YouTube channel, there's some podcasts like this with Dutch speaking people in Dutch, for example, like with a mom who had two strabismic kids and how she handled it. And now they have stereo vision, this kid. So that's amazing. Yeah, that. That doesn't exist anywhere else in Dutch, for example. Right. This kind of interviews. And I'm like a young guy, 20 years old, he acquired stereo vision through vision therapy. Another young guy who is really good with like computers. So, he gave himself stereo vision with virtual reality. Kind of like James Blaha. Yeah, I wouldn't say by accident, but just by experimenting and learning.

Denise: Yeah.

Michael: And then another interview with. With an actual like a optometry student who, who also was a strabismus patient herself. So, she has the patient side, and she has the optometric side. So, the interview is also great.

Denise: Nice.

Michael: Yeah, so all kinds of things. But it's. So, I'm doing it all myself. That's kind of the problem. So, I'm maintaining the website, I'm doing the YouTube channel, I'm doing the books, I'm doing the events, I'm cooking for the events, I'm doing the paperwork for the non-profit. So sometimes I feel if there were like two people and I could do more promotions that would maybe help. But as we grow with the French version, hopefully we can grow the organization further. And as we grow, maybe in the future I can, can hire someone like a second worker because nowadays I do promotions. I did like I did the radio interview as I mentioned, but I also recently wrote articles for like a health website, a pretty big health website which helps. Or I did like a podcast for a health insurance company. Well, in Belgium it's not exactly a health insurance company because they're. Well, it's, it's complicated. It's like private, public, but yeah. So, I try to do outreach as well, but it's hard if you're like doing all the, all the work alone.

Denise: Sure. Yeah. Well, you are doing great work and we're really excited to share the word about the French translation of Fixing My Gaze.

Michael: Yeah, a great addition. Put the, the link of the fundraiser in the description maybe. And it's, it will go on until the end of this month. So, the end of May.

Denise: Okay.

Michael: Uh, and then hopefully we reach the goal. And if we haven't reached the goal, hopefully we were as close as possible. Otherwise, I need to cut corners. Like I, I need to draw on all my French-speaking friends or something. I need to kind of stalk them like please read my text, which I will also do probably. But it's more comfortable to do it the proper way. Right. You cannot always like I'm doing all. Basically, I'm putting all my work as a volunteer myself. But you cannot keep bugging people to do the same all the time, especially if they're not really related to strabismis, like if they're not involved. But I'm also trying to build a French-speaking strabismic community now online. But yeah, that's from scratch. Right. So that. And in French speaking countries, vision therapy actually doesn't really exist yet. It's mainly like surgery because the. Yeah, the law is really geared towards surgery and the information online is really geared towards surgery, which used to be the same in Dutch. So that's. I kind of helped changing that. So, I'm hoping to redo that in French. But yeah, that will start with the French Fixing My Gaze.

Denise: Right. Well that's where it started for us.

Michael: Right.

Denise: And figuring out where we should be looking for the solution. Because I didn't know until I started looking online either that there was another option.

Michael: All right. Yeah, that's amazing. But yeah, even, even though we all look to the US like all strabiismics or at least European strabismics, let's say we look at us as this kind of beacon of hope. But I know that in the US also vision therapy is not like super common. So, you also have to travel to get the right treatment. But it's more common than in Europe, I guess. But it's also maybe not always accessible because it's not covered by insurance or not your insurance. And yeah, there's different challenges in the U.S. it's also not perfect, but if.

Denise: You look online, haven't gone away at all, that's for sure. You know, people would probably be more likely to do it if it was covered by insurance.

Michael: Yeah, yeah. Even in Europe, where, or at least in Belgium, I should say, the practitioner always kept a very reasonable rate for their services, but it's not reimbursed at all by the health insurance system. So, you can get into difficulties, especially since your vision might impair your earning ability anyways. So, some people have to start working part time or something because of their vision disability. And then you need to put money into your treatment so you really can get into difficulty trying to get the right treatment. And then of course, you might just get stuck into the wrong treatment like me, so. Or you might jump the gun to surgery because obviously sometimes surgery, a combination of vision therapy and surgery is very needed. I'm aware, like I used, because of my experience, I used to be very like, let's say militant, but I, I've grown older and wiser, let's say. And now I'm more, I have a more balanced view. But also, interesting to mention. So, my wife is Japanese, and she was born prematurely with strabismus and she got two surgeries as a, as a small child, I think. The first one at one year old and maybe the second one at like five years old or something, something around that time. But so, these two surgeries somehow jumpstarted her ability to see 3D, to have stereo vision. So, it's very interesting that even in my own household I have an example of, of the fact that surgery can be useful and you shouldn't write off one or the other, obviously. So, I'm really advocating for like communication between caregivers between the ophthalmologist and the behavioral optometrist, and hopefully good collaboration and exchange of information, maybe discussion about a certain patient's case and that would give the optimal outcome.

Denise: Right, yeah. And that, and that's what I'm about also, you know, because obviously I had to have both surgery and the vision therapy to get the result that I wanted. And I fought it as hard as I possibly could. You know, I did not want surgery. But yeah, it can be the answer for people. I've talked to, people who've said they gain stereo vision with just surgery. And, you know, obviously you have that experience as well. People who have done only vision therapy and then people who need a combination. But if the doctors never work together, then we never get to that point.

Michael: Yeah, that's also one of the reasons that I do this work. So, because they don't work together and they don't exchange information and they don't even mention each other's treatments, or at least the surgeons don't mention vision therapy. It's up to the individual to get informed and to make your choice and to put all the pieces of the puzzle together. Because nobody else will do it. They should, but they won't. So.

Denise: Yeah.

Michael: And so, I really admire, for example, parents who really don't just follow the advice, even though you should be able to follow your doctor's advice, but they second guess and they think and they search. Even though lots of people make fun of Dr. Google, Dr. Google is very useful. You shouldn't base all your decisions on Dr. Google, but you should maybe use it to go to your doctor in a more informed way, asking the right questions. Right?

Denise: Sure.

Michael: It's really up to the patient or the parent to get informed and make the right decisions. Often people still look at a doctor as if he's like God or something. Right. Especially older people, they're like, the doctor said it, it's the truth. Right. But I think maybe in the modern world with, with all the information technology, people start looking for information themselves more.

Denise: Yeah. Well, and it really comes down to what, what do you want too? Because your doctor even said your case was not likely to be helped by vision therapy, but you decided that that was what you needed to do anyway because you needed a result that was, you know, better than where you were.

Michael: Yeah, well, in hindsight, I also. So back then I was kind of disappointed in his assessment, but I also understand because he is very scared of giving false hope, especially since vision therapy is not really mainstream yet. Definitely not in Europe. So you also don't want to give people false hope and be called a quack or what's the word? Quack.

Denise: That's a good one. Yeah.

Michael: So, yeah, so now I understand why he did it. And he also said, I never, like Even in my 40 years long career, I never met someone with the same kind of stamina and motivation as you, which is normal, because if everyone had to be like me, it's impossible. Right? Yeah. So, I understand why he said what he said. And also, yeah, in the end I didn't acquire stereo vision yet so also to promise me or to maybe insinuate that I could have it, it's better to undersell and then maybe you get great results than to oversell and then not get the great result. Right, so.

Denise: Right, right. But you still got to the point where your vision was stable and you didn't have double vision all the time.

Michael: Yeah, exactly.

Denise: Definitely a lot better than where you were at the beginning.

Michael: Yeah. But yeah, it has to be said in my case I'm still not completely out of the woods. Like I couldn't work like a full-time normal job, for example. And that's also part of the reason why I'm doing this work. It's to give me meaning and it's to kind of build my own career in a society maybe that is not easy to fit in for me. Like for example, I'm too visually disabled to maybe have a normal job because let's say even I wouldn't do a desk job with less computer time. Even my vision gets too tired after a while to do other manual labor or driving or and so on. So, I have to have to stop after a few hours and take a rest and usually like an extended rest. So, I really have to find a job that I can pace my own efforts, which is my awareness work. But also, so I'm not able to work normally, but I'm also not eligible for disability help. I tried to get it and I was refused. And yeah, it was a very hard emotional thing to deal with because I felt first of all nobody helped me as a child with this problem. Then I got, I went through the medical meal that was a horrible result. And then nobody's taking responsibility for the mistakes that were made. So, I'm taking responsibility for my own case but also trying to prevent other cases so I'm able to do this work. It's growing. Maybe one day it will be. The non-profit is not meant to make a profit, but maybe I can be an employee in my own non-profit, for example. We'll see about that. But either way I'm doing the work that I would have loved that someone would have done for me. Right. When I was a kid I would have loved that I would be like a 30 something year old guy doing the work that I'm doing to tell my mom, please get Michael the right treatment so he doesn't have to grow up with this learning disability and suffer all the way and take the pills and have the suicide attempt, have the horrible double vision kind of fall into unemployment which was also very stressful Right. Anyway, it was very difficult to not be able to work. But you want to work, but you cannot work. And you have the right degree, but the degree doesn't work because you have the vision problem. And all your. The study mates that you studied with have a good degree. So, they're, like, moving on to their great career, and they're doing their normal life. They're having the career they have, the family they have. Maybe they buy the house. They have the American dream, let's say, or the Belgian dream, but you cannot participate, and you feel like you're all left alone. And so, in that mindset, that's when I started the English website. That's when I started Strabismus World to kind of connect to other people who might be stuck like me. Yeah.

Denise: Yeah.

Michael: Well.

Denise: And that was when you started the vision therapy, was when you started.

Michael: Yeah, Exactly.

Denise: Yeah.

Michael: So 10 years later, we're still doing.

Denise: Yeah, exactly. So, what would you like people to know about navigating their own vision improvement journey?

Michael: And, yeah, in my case, when things were worst, my vision was very unstable. And so, if your vision is unstable, it's hard to make predictions or kind of plan for the future. So at least try to get to a stage that your vision is stable enough that you feel kind of secure to plan for the future. To just give, like, an example. Like, I already thought having children was not an option for me because of the visual disability. But then instead of getting bitter, I kind of stayed open to the possibility maybe there would be a woman who would accept me as I am. And then working, like, being very open about my problem and being very transparent, maybe it could be possible to work together and still live together and do this right. But if you already think in advance, I'm not a fully able person, nobody will want me or whatever, or we cannot do it. Yeah, you're gonna shut down opportunities before they even happen.

Denise: Yeah. If people want to support your nonprofit and your translation into French, we'll put that link in the show notes. Well, thank you so much.

Michael: Thank you.

Denise: And I'm glad we could have this conversation today. I hope everybody will donate. Thank you for listening to the Healing Our Sight podcast. I'd love to hear from you. If you like this episode, please share it. And please join our Facebook community at Healing Our Sight to leave suggestions or comments. Have a great day.