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Seeing What She Sees

September 14, 2012

a meditation on visual impairment

This past half-year has been a whirlwind: my husband’s heart attack; demylinized spots on my brain; Joy’s work up for possible seizures; her surgery to remove surgical plates; funding news that brought her elevator project to a halt; a new church; the release of my book; and a summer’s worth of speaking commitments made previous to the whirlwind.

Six months later, there is so much to be thankful for: my husband’s life; B-12 deficiency corrected; no seizures; legs that are beginning to step again; a new funding angle for the elevator; more copies sold the first month than many books sell in a year :); many new connections to history.

Six months later, my optic nerve, the site of one of the demylinized spots in my brain, has recovered as much as it will. That means my vision in my right eye is much better than it was, but is permanently changed, enough so that my brain is turning that eye off and choosing to see with my unimpaired left eye.

That’s not as debilitating as it sounds because I’ve never had binocular vision (the ability to see with both eyes at the same time). I’ve seen with only one eye or the other my whole life.

I must admit that my ego is bruised by this development. After ten years of correction, my eyes appear strange again: the one that isn’t seeing you is liable to be gazing off over your shoulder, waiting its turn to be needed.

But my eye doctor is really, REALLY happy: with glasses, as far as he can see in his machines, my vision in my right eye is, “Perfect!  Well, maybe some residual blue-shift. After all, you lost cones. But your corrected acuity is perfect!”

Decoded: with glasses I can see the appropriate letters on the eye chart. But my right eye sees the world through antique blue glass. Beyond the bubbled glass, there is too much sunlight reflected off the waves on the water. My brain lifts a hand to shade the glare; it turns off the visual input from my right eye.

The point of this is post is not me. Technically, my vision is not impaired. I can drive and read. The new deficits in my right eye do not impair my ability to interact with the world.

The point of this post is our kids who are sighted, but have visual impairment, like Joy. I only have to close my ‘good’ left eye to see something of what she sees.

She can’t speak for herself; many of our kids can’t because their visual impairment is rooted in brain damage that effected other areas of their brain, too, like expressive language.

Even if she could, could she articulate something that is “normal” to her? Her impairment goes back to a brain bleed days after her birth as a 26-week one pound preemie twin. She has never seen the world any other way.

This is what I want you to know: it doesn’t matter that her eye doctor, a renown pediatric ophthalmologist, says on the exam she shows no signs of visual impairment; therefore, in his book, Joy has no visual impairment. That’s what his colleague, my eye doctor told me.

Her doctor can’t see the world through her eyes any more than my doctor can see through mine.

And neither doctor, in a fifteen minute exam in a dim room, sees the evidence of our impairments in how they affect our daily lives. They don’t see Joy groping at a toy while looking past it when we’d expect her to use her eyes to engage with the toy.

They don’t see how, even wearing sunglasses, exiting a building into sunlight, I reflexively close my right eye to protect it from the glare. (To get around the self-imposed blind spot, I turn my whole head to look right with my left eye.) They don’t see the ball cap I wear sideways working at my desk or in the kitchen in the early morning to shut out the too-keen light of the rising sun. They can’t see that most of the time, I use my left eye alone to see.

The doctors don’t understand what Joy’s teachers and therapists and I do: there is plenty of evidence of visual impairment behind her eyes in her brain. Eye doctors can’t see beyond what they can see, the physical structure of the eye. They think they understand cortical visual impairment because they’ve studied it in textbooks and have diagnosed it in some of their patients.

Every six months, Joy’s doctor reassures me that she has no visual impairment because her visual responses on exam are “crisp,” not “sluggish.” At the same time, for the third year running, her teachers (including one for the visually impaired) and I agree that VI (visually impaired) needs to stay on her IEP even without official eye-doctor endorsement because she uses her eyes like a child who has visual impairment.

So for those of us who have kids who struggle visually, based on my own current experience, eye doctors only recognize extreme impairment.

Even when my optic neuralgia was at its worst, my eyes appeared perfect on exam. Without the MRI showing the demylinized spot on my optic nerve and a corresponding blind spot registering on a visual field test, there was no clinical evidence for my concern that I was losing vision in my right eye.

Never mind that kids like Joy can’t take a visual field test. (It involves sticking your head in a machine, holding very still, and clicking a button every time you see a pin-prick sized flash of light. A computer marks the flashes that do not elicit a click, creating a map of blind spots in the visual field.)

Kids like Joy take visual field tests every day. They tell us by how they use their eyes that they do not see in a typical way.

But many of them can’t articulate,“When I turn my head away and look through the corner of my eye it is like you turning your head away from the glare of the sun in order to be able to see at all. When I grope for my cup with my hands instead of finding it with my eyes , it is because my hands more reliably tell me where it is than my eyes do.”

My message from behind the antique glass is this: trust your gut. No matter what the eye doctor tells you, if your little one uses her eyes like she is visually impaired, she probably is.

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