Dancing through Darknesss
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A crazy chica, that's what I was, crazy in love with Gene, my blue-eyed gringo.
"Oh, stop," I'd giggle at each of his silly compliments. Of course I didn't want him to stop. I thrived on his every "You look beautiful" and "Love you, my Juanita"—the nickname he gave me as he said he loved my Spanish accent.
His arm would wrap around my waist and lift me with one swoop, leaving me high with joy, the kind of joy that made my life sparkle.
He dazzled me. And I relished those moments when we detailed our dreams, lying beside each other on the pillow of love.
But no amount of romance, commitment, or devotion could have prepared us for the storm that would shake our world.
The storm had a name—retinitis pigmentosa. What an ugly name. It sounded as distasteful as its effect on my retina. My father carried the gene and I had inherited it.
"You need to prepare," the ophthalmologist had said.
Prepare? For what? He never said the word "blindness" then. But subsequent eye check-ups revealed a rapid progression of my side vision closing in. Then the doctor said, "You might lose it completely." He paused. "Or you may not."
I hung on to those words, "you may not." I clung to that hope.
But months later, my side vision closed even more, with the progression moving way too quickly. Bumps into open cabinet doors, running into furniture, missing steps, and even bumping into my own sons became a daily routine.
By then, they were three, five, and seven. They needed me. And I knew God, good and kind, would never allow me to lose my eyesight. Not completely. Not when I attended church every Sunday. Not when I prayed so fervently to be able to do all the tasks a mom does.
But those tasks were not as risky as driving the car with limited vision. "Don't worry, "Gene said, "I'll do the driving."
Giving up the car keys was the beginning for him and for me. We both began a battle not against the disease, but with our feelings, ones we hid behind pride, behind fear, maybe both.
Both of us 31 years old and only eight years after we declared our vows at the altar, we were caught, unprepared and helpless. With each week, each month, more vision diminished. We nearly exhausted our bank account with treatments, visits to specialists, herbal healers, and even acupuncture.
But the pain of those needles around my eyes didn't compare to the pain I took to bed each night. Gene might have done the same. I didn't know. Our talks of romance and sweet phrases revealing what was in our hearts were lost in the midst of worry and uncertainty.
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