There was something wrong with the machine.
For the past five minutes, I’d been staring into a large, box-shaped medical device, waiting to have my peripheral vision checked. The eye doctor’s assistant, a thin, blonde woman with a chin-length bob and caked-on makeup, told me that all I had to do was press on the clicker I was holding whenever I saw a white dot flash anywhere inside that metal box. Simple enough. Except that after pressing my forehead against the headrest for so long I felt a crease forming, I still hadn’t seen a flashing dot.
“When are you going to start the test?” I finally asked the woman, still pushing my forehead against the headrest. I needed to get it over with so I could pick up my five-year-old daughter from her Montessori school and get her to a children’s music group audition twenty miles away.
“It’s been going for a while,” she replied. She was young—no more than twenty-three or twenty-four. I couldn’t see her face now because of the box I was staring into, but I imagined it was blank and a bit dazed. She was probably thinking about where she was going to party that evening, and the idea that she was so checked out she couldn’t even properly administer the test irked me. I jerked my head away from the box and shot her an annoyed look.
“Well, it’s not working then, because nothing is happening.”
I stepped out of the way so the assistant could check it out for herself. She positioned herself on the stool, pushed her forehead against the headrest, and gazed through the small window into the box.
“It seems to be working fine for me,” she announced a minute later, pushing herself away from the machine and resuming her testing position. “Why don’t we try it again?”
Her words jarred me. And something about the way she said them felt like a thousand tiny needles all jamming into my skin at once. She didn’t look at me when she talked, but I could tell it wasn’t out of complacency. She suddenly seemed very attentive and serious—and I liked this version of her even less. For the first time since I had heard the words degenerative eye disease the day before, panic shot through me. I took my seat in front of the metal box and picked up the clicker.
“Ready?” she asked.
I waited for the flashing lights. Nothing. My stomach was a tangle of knots and they were pulling so tight I could hardly breathe. I jerked my forehead back from the headrest a second time and stood up from the stool.
“It’s just not working,” I declared, trying to keep my voice steady.
“I’m going to get the doctor,” the assistant mumbled. “Why don’t you just take a seat in the chair?”
My body found its way into the black reclining patient chair. I could feel my hands shaking but I couldn’t stop them. I didn’t want the eye doctor to see me cry but I couldn’t keep the tears in. The meaning of his quiet, serious words from the previous day were suddenly taking hold.
The eye doctor walked into the room and put his hand on my knee. He didn’t speak for a few minutes; he just left his hand there while I sobbed. He was about my age—somewhere in his mid-to-late thirties—and only twenty-four hours earlier, we were joking and swapping stories about our toddlers. Now, he was patting my leg and comforting me like I was a toddler myself.
“We already knew this wasn’t going to be good,” he started out slowly, carefully choosing his words.
What do you mean, WE? I wanted to shout back. It’s true he had told me that the spidery pigment he saw when he looked into the back of my eyes resembled something he referred to as Retinitis Pigmentosa. And when I Googled the foreign-sounding words later that evening, some of the symptoms—such as night blindness and loss of peripheral vision—matched what I had been experiencing. But the information I found online also said it was a hereditary disease and, as far as I knew, not a single person in my extended family had anything like this. What’s more, the information I found said that people with RP were legally blind by age forty, but at thirty-seven, I had perfect 20/20 vision. Then there was the final bit of information that had made me turn off my computer—the part about losing all remaining eyesight by your mid-fifties. I reminded myself that the eye doctor had told me he was only guessing at the RP diagnosis. Clearly he had made a mistake.
“We don’t have to do this today if you don’t want to,” the eye doctor continued in a gentle tone. “Either way, the end result is the same. I need to send you to a retinal specialist.”
He pulled a stool next to me, sat down, and handed me tissues to catch the flood of water escaping my eyes. It was humiliating to have him see me like this, and in a desperate attempt to end my blubbering, I bit my lip so hard that it started bleeding. In my mind, I debated whether the test was even necessary. The doctor already knew the answer and at this point, I knew it too.
“Let’s do it,” I said after finally calming down enough to speak. “I want to know where I’m at.”
“Are you sure?” he asked. I could hear the hesitation in his voice and sensed he was already bracing himself for my next meltdown.
“Yeah. I’m sure.”
The eye doctor left the room and the assistant appeared a minute later to administer the test. She avoided looking at me. It was clear she wanted this over as much as I did.
I pressed my now-swollen eyes up to the peephole for a third time and once again held the clicker in my hand. After about ten minutes the test was done and the assistant left. A few minutes later, the eye doctor was back with my test results—displayed in the form of two 8 ½ x 11 sheets of paper.
“These two pieces of paper represent your field of vision—which in a healthy person is ninety degrees in each eye,” he explained in the same gentle, quiet voice I now knew to associate with bad news. “The area in black ink is the area where you’ve lost your vision. The unmarked area represents the vision you have left.”
I stared at the two pieces of paper he had placed in front of me. They were both covered in black ink, with an untouched circle in the center of each and a sliver of white that looked like a big smiley-face underneath each eye. The top of one sheet contained the words Left Eye. The other sheet was titled Right Eye.
“So what does this mean?” I asked, not sure I wanted to hear the answer. “How much do I have left?”
“About ten degrees in each eye,” he returned, not looking at me.
I had heard all I needed to hear. During my Internet research the night before, I had read that a person with a ten-degree visual field or less in each eye is considered legally blind.
“I have to go now,” I managed. I jumped out of the chair and sprinted to the door. There was no way I was going to let him see me lose it again.
I held back the wailing sobs until I reached my car, locked myself in, and laid my head against the steering wheel. I had experienced fear plenty of times in my life. But it was nothing compared to the terror that was now gripping me.
I don’t know how much time elapsed. But it suddenly hit me that I needed to pick up my five-year-old daughter, Syd, at her Montessori school. I was supposed to take a twenty-minute drive on a busy interstate to get her to the children’s music group auditions she had been asking me about all week. After that, I needed to battle the freeway traffic back to the rural town where we lived so I could pick up my other daughter, Hannah, who was about to turn two, from her daycare. Then I needed to stop by the grocery store, pick up some food, head home and make dinner.
I had to pull myself together. I had to think. But I was in such a fog I was having a hard time remembering how to breathe.
What was I supposed to do?
All I wanted to do was curl up in a ball in the back seat of my car and go to sleep so I could wake up and discover that this was all just a bad dream.
I kept my head resting against the steering wheel for a few more minutes, unable to will myself to move. Then it occurred to me to call John.
I grabbed my phone and punched in the numbers to my husband’s cell phone. I got his voicemail.
“John. I’m going blind,” I sobbed into the handset. “I’m practically already blind.”
Thanks for reading:) This is the first chapter of my memoir, FOCUS, that just launched as an ebook on Amazon. It's about the shock of discovering at age 37 that I was already legally blind...and utlimately about learning to see what counts as my vision closes in on me.