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Monday, May 23, 2005

How to Stop Going Blind?

One of the ironies of my life is that Annie Sullivan was my hero, not Helen Keller.

I read the biographies of one woman, was moved, was filled with wonder at Helen's story. I even thought about going to Radcliffe -- in the way that an admiring nine-or-ten-year-old thinks of college and of being a grown-up. But my full-fledged fascination was reserved for Annie, and I combed the biographies for details of her life, her struggles, her power to make things happen.

I have been re-gifted with an amazing amount of vision for daily living that lets me maintain almost complete independence. Yet, eleven years after the fact, I am still struggling to accept the limitations of the vision I re-gained. The numbers are telling: only thirty percent of normal vision still functioning (at the low vision specialist's best estimate), a ten to fifteen minute limit on reading regular print without assistance. The majority of the medical professionals I have worked with, wonderful though they have been, have little understanding of the difference between acuity and functional vision. My retinal surgeon still marvels at my orange glasses -- worn to protect my ravaged retinas from florescent light, blue light, and glare, to enhance the vision I have and give me access to more sharp edges, to crisp pictures, to longer periods of functional vision with less strain.

No one told me in advance that moving the CCD-TV tray fast enough to let me read at my "normal" (un-hampered) pace would make me sea-sick, resulting in more headaches. The low vision specialist diagnosed the problem after several years of struggle and pain. But the general attitude of the professionals was -- okay, you can see now, you can even drive, what's the problem? Why would you need any adaptations? Headaches? Low stamina? Maybe they'll go away. You can drive!

And with that attitude in place, just as my brain spent months -- nay -- years struggling and screeching for more information to fill in the gaps before settling into the task of learning to interpret what it was getting, so I have struggled and continued to try to do the immense amount of reading my profession calls for without accepting the fact that my eyes just won't do it.

I can do almost anything I wish with the vision I re-gained, but not this. Not my chief source of pleasure and intellectual activity. Before this vision loss, I would consume three to four books a week for pleasure or work. Now I cannot get through one without a struggle, and once again my brain is screeching for more information -- faster information.

Other means of getting the information to my brain exist. But there have been problems, even with the magnifiers. Having been a voracious reader, I had learned to take in whole lines at a time, sometimes two or three when working, to skim and move back for important points, to scan whole pages, and move on. A strong magnifier or even an audio book does not allow for this. You must read word by word. Whole lines are rarely visible, or if they are , you have given up magnification to get the whole line, and so reduce the benefit of the magnification.

But there are other ways and means. A full screen-reader on the computer and other audio programs which can be set at high speeds will allow activities that parallel the type of skimming I have been used to.

I'll be shifting more and more to audio over the next few months, and my use of audio whenever possible in the last ten years has allowed me to reach the state where I can not only follow a story-line, but can work critically in audio. But human beings are such visual creatures. The instinct, the desperate instinct to gather information primarily with our eyes is stunning. It shoves aside reason, past experience and the memory of skull-cracking headaches to urge me to pick up a book and read without magnifiers, without even my reading glasses. I can do everything else -- surely with one more attempt, I could do this.

I wonder how much of the habit of this struggle comes from the soul-racking effort to stave off blindness that marks almost any initiation into this world of re-gifted sight. My story is one of sight literally re-gained through experimental surgery. But even those who have experienced a steady loss over time or a sudden irreversible loss of partial sight enter this state of the re-gifted. For once you have lost sight, you are aware of what you have to an amazing degree and fight to use it to best effect. Only those whose loss occurred so far back in childhood as to seem the natural state of the world are exempted from the constant fear of more loss, the heightened awareness and hyper-protectiveness of vision maintained, preserved, salvaged, saved, horded, cherished, mourned.

Nothing in the medical world prepares you for acceptance. No one encourages acceptance -- only struggle. Eleven years ago I horrified the residents and the surgeon involved in restoring my sight by requesting a weekend to decide if I would have the surgery. I was an excellent candidate. The odds of at least preserving what vision I had were overwhelming, and the chances of restoring at least partial center-vision were strong. But I wanted to think it over. I had lost the center vision in both eyes over the course of three years. I was tired -- exhausted -- prostrated from the fight to stop, to hold, to maintain, that had resulted in losses at every turn. Nothing had worked as they said it might. Having gone blind twice, I had to question the wisdom of setting myself up for another loss. I had to ask if it was time to stop fighting the particular battle and get on with life as a blind person.

I sat on the steps of my parents' house in the country. Early October in Indiana. Indian summer. The trees were still green and the wind was strong enough to move them rhythmically. No sharp edges. No distinct images. Just peripheral awareness, and light and color. Donut vision. But still vision of a sort. I remember the greens and browns of the trees, the grey-brown of the wooden porch steps, and the blue of my father's shirt as he came to sit on the step to the left of me.

He did not say a word. He just sat while I looked and thought and gave voice to the exhaustion. The quality of the man's silence was rich and deep, filled with the knowledge of doubt.

He gave no hint of his wishes, though I found out later that my mother was bouncing off the walls of the kitchen trying to contain her instinct to DRAG me into the operating room and hand the doctor the knife. Her recognition of the need to let me make this choice and the strength it took to stay in the kitchen and not push are among her finest moments of parenting, though the picture that comes to mind of her pacing, smoking, shifting old mail on the counter, picking up pens and putting them in a cup, picking up the lighter and putting it down. Moving the cigarette pack, opening cabinets, and looking in the freezer, only to move back to the counter, to the lighter, to the ashtray -- I have to grin. She must have been about to explode!

How my father sat beside me in quiet compassion without urging one course or the other, I'll never know. But he sat. He murmured a few things. But for the most part, he just kept me company while I made my choice.

I chose the surgery. I chose the struggle. I re-gained my vision. I walk with a blind cane and drive a car. I can see tree leaves, and a spider's web, the moon, and even some of the stars at night. But I cannot read without help. And I cannot use my eyes to read the quantity of print my life as a teacher and my life as a student require.

I gave up counted cross-stitch and took up my knitting needles instead. Though I still love the color and texture of cross-stitch, and envy the friends who can work with the pallet of flosses and fine linen, my aversion to the confusion of the printed charts is visceral -- nausea and a mental flinching even knowing I will not be required to read the pattern. I don't like the fact that I can't do it now. But I've learned to accept it.

After eleven years, perhaps it's time to stop struggling for that in other ways. As I asked once before -- am I allowed to stop fighting? My father had no answer for me.

When people ask about "being blind," I've often said that going blind is much worse than being blind, and leave them to figure it out.

Perhaps it is time I stop going blind.

1 comment:

KnitNana said...

I know how hard that was to write, how difficult the decision is that you face. I reach across the miles to hug you - I'm not where you are yet, but may be soon. I'm still fighting, but like you, tired. It was the name you chose for your blog that led me to you, finding a "sister" in this awful challenge we both face daily. I'm here.