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nystagmus, revisited
Nov. 16th, 2013 11:03 pmI have been living with nystagmus all my life. I received it from my mother, who received it from her father, who said he did not know where he got it. My brother has it, and now, so does my daughter. And for her sake, I am now revisiting nystagmus.
First, what is this rare condition? My eyes wiggle uncontrollably whenever I look, unless I look out of the corner of my eye. I don't really have a problem seeing; the world does not wiggle; but it is a little blurry and I often find myself turning my head sideways to look out of the corner of the eye, where the wiggling is less. it is called a null point. Some people's null points are always on the same side, but mine shifts from side to side every couple minutes. More about this in a minute.
I say revisit nystagmus, because there was a time when i spent a lot of time thinking about it and working on it. Between the ages of 6 and 14my mother took me to every famous expert she could think of, first in Russia then in the United states. She had my brother and me doing eye exercises every night all those years. she read a lot of books and tried almost everything - even feeding us lots of carrots.
The experts did not help a lot. Some treatments were available for very severe nystagmus, for example freezing the muscles in place with botox. Some new surgical options have come about since I made the tours of top vision hospitals as a child. they have to do with cutting and reattaching the little muscles which move the eye side to side. Sounds awful, to me, and therefore, as we consider the options for our daughter I am revisiting eye training instead.
In Japan, I heard that biofeedback is used to train the eye to stop moving. If you are aware of the motion (which I, ordinarily, am not) you can stop it. Or so goes the logic. For some people, their whole world shakes, that is called strabismus; Obviously, they are aware but can do nothing about it. Therefore, just being aware of it is not enough, but perhaps, there are different cases.
Is it possible to overcome congenital nystagmus?
I begin simply. Closing one eye, I look at an object several feet away and gently place my fingertips over the eyelid of the closed eye. I can feel the closed eye moving right away. The eyes move in tandem, and the nystagmus is the same in both. Step one is complete, i can feel the nystagmus, no need for an expensive biofeedback machine.
Incidentally, my father once made one. Two infrared diodes were attached to an eyeglass frame. One diode emitted infrared light, while the other received it. The signal was put to a speaker. It sounded like a buzzing. All this was wired inside a little box the size of a Walkman. It was very unsettling but it worked well. My brother and i hated it, because of the buzzing, and because we did not know how on earth we were supposed to stop the nystagmus. Now, however, I have some tools, and perhaps the endeavor is not quite as futile.
Tool number one is mindfulness. It is well known to those who practice meditation that the simple act of staying still calms the mind. This calm is real, and nystagmus quiets when the mind is calm - I have long noticed that it was gone when I was waking love. But, calm comes and goes, and I want my eyes to be still whether or not I am calm inside. Another tool is the scientific method. I have published a number of papers as a scientist, but can I achieve an understanding of my nystagmus that can lead to some corrective action?
First, what is this rare condition? My eyes wiggle uncontrollably whenever I look, unless I look out of the corner of my eye. I don't really have a problem seeing; the world does not wiggle; but it is a little blurry and I often find myself turning my head sideways to look out of the corner of the eye, where the wiggling is less. it is called a null point. Some people's null points are always on the same side, but mine shifts from side to side every couple minutes. More about this in a minute.
I say revisit nystagmus, because there was a time when i spent a lot of time thinking about it and working on it. Between the ages of 6 and 14my mother took me to every famous expert she could think of, first in Russia then in the United states. She had my brother and me doing eye exercises every night all those years. she read a lot of books and tried almost everything - even feeding us lots of carrots.
The experts did not help a lot. Some treatments were available for very severe nystagmus, for example freezing the muscles in place with botox. Some new surgical options have come about since I made the tours of top vision hospitals as a child. they have to do with cutting and reattaching the little muscles which move the eye side to side. Sounds awful, to me, and therefore, as we consider the options for our daughter I am revisiting eye training instead.
In Japan, I heard that biofeedback is used to train the eye to stop moving. If you are aware of the motion (which I, ordinarily, am not) you can stop it. Or so goes the logic. For some people, their whole world shakes, that is called strabismus; Obviously, they are aware but can do nothing about it. Therefore, just being aware of it is not enough, but perhaps, there are different cases.
Is it possible to overcome congenital nystagmus?
I begin simply. Closing one eye, I look at an object several feet away and gently place my fingertips over the eyelid of the closed eye. I can feel the closed eye moving right away. The eyes move in tandem, and the nystagmus is the same in both. Step one is complete, i can feel the nystagmus, no need for an expensive biofeedback machine.
Incidentally, my father once made one. Two infrared diodes were attached to an eyeglass frame. One diode emitted infrared light, while the other received it. The signal was put to a speaker. It sounded like a buzzing. All this was wired inside a little box the size of a Walkman. It was very unsettling but it worked well. My brother and i hated it, because of the buzzing, and because we did not know how on earth we were supposed to stop the nystagmus. Now, however, I have some tools, and perhaps the endeavor is not quite as futile.
Tool number one is mindfulness. It is well known to those who practice meditation that the simple act of staying still calms the mind. This calm is real, and nystagmus quiets when the mind is calm - I have long noticed that it was gone when I was waking love. But, calm comes and goes, and I want my eyes to be still whether or not I am calm inside. Another tool is the scientific method. I have published a number of papers as a scientist, but can I achieve an understanding of my nystagmus that can lead to some corrective action?
