MY ORIGINAL POST

Michael Lievens

“Currently, I can do almost everything a normal person can. If not, I use aids like audio assistance. The worrisome part is that no matter what activity involving a lot of eye movement, I get exhausted after two or three hours max. Then my reconversion and recovery takes quite a while, usually longer than the activity itself.

Now here’s the deal… How the hell am I supposed to be a reliable employee or entrepreneur like that? And if not, since I can do many things ‘normally’ for brief periods of time, how to convey this problem to MDs who don’t take the functional consequences of strabismus or convergence insufficiency seriously? Why even waste more energy and time on them which I am trying to direct at rehabilitation? But then, in the mean time, how to deal with a real disability without disability aid? Who knows?

These are real questions and issues.”


SOME ANSWERS

Liz Simpson

“Productivity seems even more important today than ever, we are now racing against the milliseconds of the computer. We often feel left in the dust, even though we can be quite intelligent, our inability to keep pace is certainly a handicap. Then again, we can stand for other qualities besides speed.

Such as global thinking, compassion, ability to express the experiences that set us apart from the mainstream. So what kind of attributes do we have that would add value to a position or venture? It’s something to ponder. For instance, a person may excel at generating ideas more than executing them, or have some valuable critical thinking skills.

No, doctors would probably never “get” how significant our obstacles are. It is a kind of benign neglect in their view, perhaps – they know of nothing that will enhance our situation except to continue to try. And sometimes, we just get weary of it.

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” , – Henry David Thoreau”


 

Mary Demmin Jimenez

“I am glad others get how hard this is. I have daily migraines and dizzy from my eyes trying to adjust to one picture. I also have other disabilities besides my vision problems. It all adds up to a big ball of crap.

Keep fighting and keep learning as much as you can.”


Bill Johnston

“The main point to me here is that the medical community treats us with the same indifference and dismissal as the world at large. It’s up to us, they’re not going to do aything at all.”


Becky

“I am 57 years old, and have suffered from diplopia (double vision) for almost 6 years now. Along with nystagmus, esotropia, cataracts beginning in both eyes and life-long near-sightedness, I can identify with each and every symptom description mentioned in this entire blog. There is some hope on the horizon with regards to our country’s view (US) of the condition being a disability. I was just awarded my SSDI after a two and half year battle. The information and stories I found here thanks to Michael’s good insight to blog about his own experience gave me what I would consider my game-winning edge to win my case. So to those of you who are disabled due to this condition, like me, never give up! Thanks Michael!!!”


Davina Klatsky

“I understand exactly what you’re talking about. I’ve been dealing with strabismus and high anisometropia since birth. I know how poor vision coupled with no binocular vision effected the course of my entire life. Beginning with being a poor academic skills (reading, reading comprehension, writing, math) leading to poor self-confidence and culminating in not being able to choose a lucrative profession and obtain some kind of financial success in life. True, my case is very complicated and not universally applicable but these are nonetheless real issues. Four surgeries and almost 3 years of vision training later, it all appears too late to help in my case.”

 

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