A Sit Down – with Michael Lievens
This post appears as part of a series called Sit Down – candid conversations with real people detailing their journeys and experiences with Vision Therapy.
A Sit Down – with Michael Lievens
For the benefit of our readers, can you explain how you are involved in Developmental Optometry?
My name is Michael Lievens and I’m a Vision Therapy patient and blogger. My interest in developmental optometry ensued after a long and painful process of dealing with conventional eye doctors with life shattering consequences. For sake of completeness and in order to make my answers more contextually understandable, I should mention that I live in Belgium (Europe) and my native tongue is Dutch. I am currently 24 years old.
Your visual symptoms seemed to have started very early in life. Can you tell us about your diagnosis?
My vision underwent normal development up until about the age of 3 or 4. There are plenty of pictures proving I had normal eye alignment until then. Around that age, I started exhibiting a number of developmental delays. I didn’t seem to have a preference of hand. I had trouble staying focused during prolonged activities and so on. Generally, I seemed to be falling behind in preschool. Obviously my mother grew worried. She talked to people from the regional educational institute for student counseling, took me to see a neurologist and two eye doctors. The student counseling institute didn’t have much counsel to offer because during their testing I performed normally. The neurologist did batteries of tests on me, same story. According to the first eye doctor my eye sight was perfectly fine and only the second ophthalmologist, after x amount of time, eventually thought of the possibility that I might be farsighted and prescribed glasses. Too little, too late. By then strabismus and amblyopia had showed their head. It was a classic case of undetected hyperopia turned into accommodative strabismus due to flawed standard vision screenings. This could still have been remedied fairly easily through Vision Therapy but that didn’t happen.
Was patching ever suggested?
That same ophthalmologist who thought of hyperopia had my mother patch me. I don’t remember how long or how often. After all, I was in kindergarten. Along with the glasses it might have had some impact in restoring vision in the amblyopic eye but it didn’t establish binocular vision as Vision Therapy would have. I grew up being an alternating esotrope.
As you were going through this process of patching your right eye, were your academics affected?
The patching occurred during nursery school and in combination with the glasses, I seemed to ‘catch up’. This is to say I was doing a little better but one can only guess at what my real potential would have been. In Belgium elementary school starts at the age of 6 and goes on until the age of 12, after which you go to high school. Learning how to read and count was a painstaking process but I finally accomplished it with some extra tutoring by my mom during the evenings. Bad start if you ask me. Consequently, my early spelling was a nightmare because I was very limited in my reading. However, I was top of my class in math for a couple of years. Then, I became obsessed with learning French and excelled at that for a while. Because I’ve always been a very motivated student and put in tons of work, it looked like I was doing ‘alright’. I have a rather obsessive character which is necessary if you want to succeed at anything with strabismus. I knew that, for some reason, things always were a little harder on me. I also knew that if I worked insanely hard at it, I could eventually overtake the rest. So I did. In general, I was always somewhere at the top of my class but my performance was inconsistent. My parents didn’t think I was terribly bright and I should be ‘realistic’ while the teachers thought I was not working all that hard and I had a lot more potential. Turns out they were all wrong.
In 2006, at the age of 16, you made a fateful decision about your visual condition. What can you tell us?
Skipping ahead to high school, it became increasingly hard to keep learning at an appropriate pace, let alone my optimal pace. I was still doing better than the average student, but I was starting to suffer quite badly. The strabismic mechanisms of suppression that had originally helped me to navigate the world were getting strained. It’s wrong to say that strabismics have no eye teaming skills. They do, but it’s just not a healthy, normal way of eye teaming. It’s not a stable, sustainable way and inevitably that abnormal system starts crumbling and performance, already sub optimal, starts declining even more. This always happens sooner or later. When this happens one should undergo Vision Therapy as soon as possible. If that doesn’t happen it will just get harder and harder to maintain performance while eroding your general health.
Of course, at that time I still didn’t know why I was having such a hard time but I figured it had something to do with my eyes. By lack of reference I didn’t understand how my vision was bothering me because my eye sight was good but I knew something was off. But if so someone would have told me about it, right? I mean, strabismus is such a common problem. If there was a solution it wouldn’t be a secret, right?
One year before graduating high school, I went to my annual vision screening. This time there was a new eye doctor in that practice. It was the son of this prestigious practice’s founder. Even foreigners come from wide and far to this particular practice to undergo laser surgery, eye lid surgery and more of these superficial eye corrections. Needless to say they are well funded and make a great impression. It was reasonable to assume I was in good hands. He asked me whether I had ever considered eye muscle surgery for my squint. I thought it would be expensive so I never really pressed the issue with my parents. Apparently strabismus surgery was covered by public health care in Belgium so that was not really the issue. In the spirit of ‘any improvement is welcome’, I agreed to the surgery. As a matter of fact the outcome of the first surgery wasn’t too bad. I came out with slightly more aligned eyes and my strabismic mechanisms of suppression and unusual eye teaming were still largely intact. I did experience slightly more photophobia but functional drawbacks were not drastic or obviously noticeable to me back then. Looking back at it, it would have been the ideal time to start VT. Well, not exactly because I had already lost a lot of time and potential. Ideal would have been at the age of four but it would still have been awesome to have known about VT before going to University. In that case I think I would have been more forgiving.
Prior to your first surgery, were you informed of the possible risks or negative outcomes?
He said it was a routine procedure which he did regularly (even though it was not his specialty) and that the risk of double vision or other complications was very, very minimal. So for the sake of clarity, he did not disclose all my treatment options and might in fact have diminished my chances of fully recovering from strabismus. That is certainly what happened with that disastrous second surgery.
How did you reach the decision for a second surgery in October 2008? Was there an improved outcome?
Because I’m a December baby, I graduated high school at the age of 17. Somehow I had made it through high school and I had to make a decision about my future. Everything had been such a struggle based on a foundation of bad vision and poor reading, I had no idea what I wanted to do. Nonetheless, I knew I was intelligent even if it didn’t always show. The act of self-making and figuring out your own strengths is very hard if you can’t rely on stable vision. I had just been busy trying to survive the day to day challenges of binocular vision issues. In the end, I settled for Economics which I now realize was a compromise between my true aspirations and my bad vision. With my vision disability I wouldn’t have been able to study computer science, architecture or engineering. In fact, most people thought Economics was quite ambitious already but I was determined to succeed. I studied 24/7. The biggest stumbling block wasn’t understanding the subject matter but finding the time and eye fitness to get it all read. Living this asocial, demanding, studious life style worked. Every single move was directed at getting closer to my goal of passing those exams and ultimately I did. After the first semester however, I started noticing vision changes. My strabismic adaptation mechanisms were being stressed to its limits and I broke through my suppression. On the one hand I was having trouble seeing the black board which indicated a decrease in hyperopia but on the other hand I was getting seriously annoying double vision. My strabismic way of abnormal accommodation and vergence was failing. The whole visual house was coming down. Double vision started interfering with keeping up my study performance. I panicked and when back to the same respected ophthalmologist. I told him ‘I’m starting to see double, I can’t live or study like this. What can we do?’. He calmly answered that he had never seen anything like this and the only thing we could do was a second surgery. Suffering daily and hoping for quick relieve, I assented. Miraculously I succeeded my first year of University without any re-examinations in summer. It was a triumph but if my vision didn’t improve soon, it was very much a pyrrhic victory. In October 2008, right after starting my second year of University, I underwent the second surgery. It was a complete disgrace. The double vision was exacerbated and was now completely intractable. I couldn’t read without patching one eye anymore. In turn, patching caused horrendous headaches. I saw other doctors who were equally clueless. I tried to deal with the headaches through pain medication, putting ice packs on my head and drinking alcohol to loosen up. A glass of wine before the exam. That sort of thing. Through power of will and torture I made it through my second year of University but I was developing other serious health problems while doing it. Studying and life in general were getting unbearable.
On your blog you’ve published the letter you wrote to Sue Barry, author of Fixing My Gaze, in the summer of 2011. Your perspective is quite raw and revealing, and certainly details the pain and struggles you were suffering. In that letter, you wrote “I have considered ‘escaping’ several times. What did you mean by that?
Clearly it was a euphemism for committing suicide. People have no idea how bad things can get. Most doctors have no idea about what they are doing and aren’t looking to get to the bottom of a serious problem. They just want to do their jobs and get their money while telling you to ‘deal with it’. After a while, my parents accepted this answer and just started telling me to deal with it as well which would become a big problem later on. Ironically it was up to the functional vision impaired and learning disabled kid to get into the neuroscience of it. The cavalry isn’t coming. You are on your own and you have to fight for your life or die. That is the current state of affairs.
Following what seems to have been a horrible experience, why did you decide to have a third surgery in August 2009? Did it help?
After the horrible second surgery we started seeing real strabologists, eye doctors specialized in strabismus. My parents tried to do the right thing and we saw four Belgian top strabologists. Most of them are internationally renowned and have spend time studying and working abroad. All but one said they didn’t think another surgery would do me much good which is code for ‘this situation is so abominable, I can only end up with the law suit by trying’. One of them was more confident and believed he could somewhat improve the situation. I doubted about agreeing to another surgery but in the end this was my only shot. Living like this was not an option. I didn’t have much to lose. If it went badly I could still kill myself all the same. The third surgery took place during August 2009. Let’s say the third surgery more or less restored things to the way they were before the second surgery. A little more livable but the original problem was still not handled. I could read, albeit poorly and slowly, without patching one of my eyes again. I didn’t have to take as much pain medication, which is not to say I didn’t experience pain. After all these debacles, I had also developed a jaw cramp especially when trying to read. Now I know this was all visual stress related but back then I was just having all these problems without knowing exactly why and even ‘the best doctors’ couldn’t tell me. Safe to say, things looked very bleak. That being said, even if I would have known about VT at that time, the third surgery would have been necessary to control the damage done by the second. In that sense I’m grateful to that more qualified surgeon who performed the third surgery. Yet, after seeing all these specialists and undergoing another surgery I was still not informed about the existence of Visual Neuro-rehabilitation.
You’ve written that in the fall of 2010, you discovered Vision Therapy. Tell us about this discovery, and what was Dr. Naegels initial prognosis for your visual system?
So after suffering through yet another year of double vision academics, I burned out. I HAD to give up which is not something that comes to me easily. That third year had left me with three re-examinations in summer but I couldn’t prepare for them. Physically impossible. So I told myself ‘Fine, if I can’t do this I will re-focus my effort on the problem that is keeping me from doing the exams’. Over the years I had done some very brief looking into strabismus by “Google-ing “Dutch words but that had not revealed many new elements. Another problem to keep in mind is that visually impaired people are not always very good at browsing the internet and I had grown increasingly worse over the years. Regardless, this was my last hope. My English and strabismus related vocabulary had reached a level which allowed me to try my hand at looking for solutions. I still remember exactly where I sat and what websites revealed the truth to me. My brain exploded. How could it be that I’ve never been told this? How could any of those people look me straight in the eye (sort of) and just sit there not mentioning this? It’s just lying by omission.
I immediately ordered the book Fixing My Gaze and told my mother about this find. The relevance did not seem to register. I looked for behavioral optometrists in Belgium and found Guy Naegels (FCOVD, FAAO). My mother accompanied me to my first visit. After three years of double vision and a couple of surgeries, he told us he thought visual training would not make much of a difference anymore. Not wanting to inspire false hope, it was an honest reply I suppose. Be that as it may, he didn’t understand it HAD to work. It would work or I was done for. I was getting very tired of listening to people telling me how meager my prospects of recovery were due to past mistakes by the medical profession. Either way, failure was not an option and I insisted on starting the training. Every check-up since I have exceeded his expectations. He has acknowledged he had not foreseen this coming but it is undeniable. Over the years I’ve taken a lot of initiative in my own training but the professional assistance has been great nonetheless. I have a constructive relationship with my vision therapist Sofie De Witte. Something I very much appreciate about Dr. Guy Naegels’ practice is that he does not take advantage of his fairly unique position by charging outrageous prices. Unlike surgery, Vision Therapy is not covered by the Belgian public health care system but pricing is kept as accessible as possible to partially counterbalance this injustice.
Can you describe your mindset and quality of life at the end of 2010?
That summer I had undergone a serious burn out preventing me from studying as mentioned before. Not only my reading ability was affected but also my general fitness and health. Fortunately now, after slowly reading Fixing My Gaze, my life started to make more sense to me and I was still a student more or less shielded from working life. Being a student must really be ridiculously easy if you don’t have to deal with a visual reading disability. I had failed some exams the previous year which I loathed, but I could retake those Bachelor subjects while doing my Masters. I realized the only way to get better was to take it easy so I told myself to try to enjoy life more and if necessary fail a couple of subjects. Turned out I didn’t have too many subjects that year and writing my thesis was somehow manageable. My last year of University was pretty good as I met a lot of great people and worried less. At least for the time being.
Moving forward in your journey, how long have you been enrolled in Vision Therapy and what was the outcome?
Outcomes are slow but consistent. I had been suffering from double vision for a couple of years and injury, not just insult, had been added to the original neurological condition through the surgeries. I reiterate this point because I can’t emphasize enough how much it set me back. I had been in the red for a couple of years and it was clear a comeback, if at all possible, would take a couple of years too. At least that was clear to me personally. It just makes sense in an opponent process theory (http://en.wikipedia.org/wiki/Opponent-process_theory) kind of way.
You can see my progression in more detail here:
As your vision improved, was your state of mind improving?
Well, in my opinion vision problems are not so much a medical mystery as they are a social problem. By this I mean that some people are hurting other people by denying scientific facts, even when proven beyond doubt and explained to them. Let me give you an example… During that final year of University I made good progress at narrowing the angle of my squint. Although it’s not that simple because the squint varied depending on the viewing direction and I would go from eso to exo constantly. I was still having double vision but at least I was making progress. Just having a proper explanation provided by Fixing My Gaze improved things. This academically lighter year and the knowledge I was doing everything I could somewhat eased my suffering. But then, when I graduated in the summer of 2011, it became clear how little my environment understood my situation. Even though I had been torturing myself through University, on paper I was a fairly successful student. It looked like everything was fine because I kept my issues to myself and always did what I was supposed to do at whatever personal cost. So at the age of 21, I was a very sick, highly educated man who could barely read anymore.
I couldn’t take visual job assessment tests but I found a company which didn’t require those. I had been pretending to be okay for a long time now so I acted my way through a job interview playing that part once more. As I said, my credentials look good on paper and I can be persuasive. I’m articulate and knowledgeable as long as I don’t have to read on the spot. It’s scary to think no one notices how badly you are doing even when standing right in front of an interviewer while seeing two of her. I worked for three weeks but it was not sustainable. My vision was slipping back and I had to quit. Close family started putting pressure on me and scolding me for not being able to work. When I tried to explain my vision issues again, I was instructed to just deal with it. ‘Just accept it’. ‘It’s part of who you are, it’s part of your character.’ Come again?
I had to move in with extended family to defuse the situation and lived through an even worse burn out than the first one. It was very stressful. I had no control over the situation. I just had to keep taking the blows. I was still having constant double vision and this severe shock and identity crisis might have cost me half a year of VT progress. It was clear that the only way for me to survive was to take VT to a professional athlete’s level and even then it would be a long shot. It is only now, more than two years and lots of VT progress later I am starting to develop a sense of humor about it all. Fortunately, I’ve always been constructive and optimistic by nature but it will take some time to completely get back to that default setting and feel safe. As long as I keep my eyes on the prize, I’ll be fine.
Your passion for sharing your story is inspiring, and your blog is nothing short of remarkable. Why was it so important for you to share your story?
After being treated unfairly for twenty years by the medical system, educational system and then my parents without ever having done anything wrong, I plunged into unemployment due to poor health with literally no end in sight. After all that ferocious hard work, I was left with nothing but the prospect of years of uncertain rehabilitation. Suicide was still very much a risk. I thought, if anything, I might at least save a couple of people from undergoing the same fate as I have. Originally I started out with my Dutch language website www.scheelzien.be which was launched somewhere around December 2011. ‘Scheelzien’ is a popular Dutch word for strabismus. It seemed to have an impact. Parents and adult strabismics reacted and thanked me for providing this life altering information because there are very few good Dutch resources on this topic. Reactions still appear every so often. I also appeared in a major Belgian newspaper featuring the website. It did not improve my vision or my general health and does not help me financially but at least it was saving people and that consoled me. That website contains only very general information and is not intended as a blog. I was learning more and more and living experiences I wanted to share. My mind has been blown continually over the last three years and people around me don’t seem to understand the far-reaching implications of this knowledge so I had to find another way to vent. This is how my blog got started. After having done a lot of research, answering many of my own questions and having improved my vision quite a lot already, I sometimes start to forget how deeply disturbing this whole conventional eye care system is but people should know. Making a true difference in people’s lives provides a certain kind of satisfaction by itself as I am sure you know. Every time I receive a message saying my writing has helped someone somewhere in the world, I feel a little bit better.
What exciting events does the life of Michael Lievens hold in 2014, and in the years to come?
During 2013 my double vision has been increasingly absent and finally after three years of VT, functional benefits like a little more energy, slightly easier reading, less motion sickness and an easier time using electronics are starting to kick in. I think the first half of 2014 will still be mainly dedicated to living a rehabilitation friendly life style stressing visual hygiene and moderate activity. For the first time, I’m truly optimistic about the new year. I know my vision better than any doctor and I know that by the end of 2014, my vision can be functional and I will increasingly be able to dedicate energy to exterior rather than in body problems. At the age of 25 I will, for the first time ever, be able to read and learn fairly comfortably. Indeed, the best is yet to come.
Over the last couple of years, when my vision allowed me, I have done plenty of research on vision, the brain and the senses. Moreover, I have written about my hardships and how they can be explained. The blog is just the tip of the iceberg. After all is said and done, the only thing that remains is a story filled with neurological and other cliffhangers for people to learn from. I sent a rough draft of my manuscript to people like Susan Barry, Hazel Dawkins and others. The consensus seemed to be that, when written more fully, it had the potential of becoming a useful and important memoir. Those reactions were heartwarming. Once my vision has reached a point that allows me to work on it more thoroughly, I am determined to give it my best. That point will probably be reached somewhere in 2014. Perhaps I should undertake a fundraising effort like our good friend Cavin Balaster because finances might become a problem.
After I have more or less accomplished my VT goals of seeing and reading comfortably and I got that book out of my system, I will see where the wind takes me. Finally I will be freed from visual restraint. If the book is well received and I’d be given the opportunity, I could be a powerful vision advocate in Europe or America as I am fluent in Dutch, English, French and Spanish. There are many people like me who are smart and motivated but are getting nowhere in life because of vision issues. That is unacceptable. If the visually impaired who survived, did not lose their minds or get imprisoned (you know the stats) don’t do anything to change the situation, who will? Either way, first things first and one day at the time. I am still adjusting to the idea that I might actually overcome this mess and pull off ‘the impossible’. It is seriously starting to look like it. I might finally get a real shot at life instead of constantly having to beat severely curtailed odds! How crazy of an idea is that?!
Some Closing Thoughts – A great thanks to Michael for taking the time for this interview. I was introduced to Michael’s blog about 6 months ago and have been an avid follower ever since. His writing, which details his journey through VT from a patient’s perspective, is honest, raw, and unique. I’d strongly encourage everyone to check it out. With a very bright future in front of him, please join me in wishing Michael the absolute best! 🙂