There is no good way to tell a new guy in your life that you’re
going blind. I chose the best of lousy options: I broke the news after sex, and
I packaged it right.
At 22, David was a novelist just starting his career, and I knew if I framed my
plight as poetic, he’d find it irresistible, at least on a narrative level. So
lying next to him in the dark, I told the story like a Gothic novel.
I started with how, three years earlier, at 19, I realized I couldn’t see the
stars at night. This seemed like an innocent enough detail until it turned out
to be the first symptom of an incurable degenerative retinal disease. The doctor
told me I would slowly lose my eyesight over the next 10 to 15 years — first my
nighttime and peripheral vision, and later, my central vision, too.
I ended on a high note: Losing my vision, I explained, was teaching me to really
see. I would go blind with a bang, not a whimper, by seeing and doing more in
the next decade than most people did in a lifetime.
All true, but only part of the story. The pretty part.
Our romance was still new, and I was nervous about how he would react to my
disclosure. His response, though, was as grand and poetic as the story itself.
The next time we met, he wore my name on his arm. Six lowercase letters stained
the skin, indelibly. As I admired the tattoo, he told me I had lit his darkness
and he would light mine. No matter what came, he said, we would face it
together. He was all in.
I met David during our last semester in college, where we were both English and
theater majors. I liked that he was smart but not pretentious, funny but never
mean. I liked his disarming sincerity, so different from my own reliance on
charm and subterfuge. There was solidity to him and it made me feel safe for the
first time since my diagnosis.
Where David was heavy, I was light. Where he was restrained, I was freewheeling.
I made him laugh and got him to do things that scared him, like moving to Los
Angeles.
He was a small-town Southern boy who had always dreamed of living in California
but was never ready to take the plunge – until I took it with him.
In Los Angeles, David helped me with my acting auditions and I edited his
manuscripts.
On weekends we lowered the top on his beat-up convertible and drove up the
Pacific Coast Highway, our music loud. The golden hills looked like the backs of
sleeping lions, we agreed. David drove for hours, one-handed, because the other
hand was melded to mine.
Our life together was a grand romance, and my encroaching blindness was more
blessing than curse, because it galvanized us to live with urgency. The
blindness was poetic because it hadn’t happened yet.
In the abstract, blindness is epic, noble, simple. In reality, it’s a different
story altogether.
In reality, it’s tedious, draining, messy. It changes you in surprising ways,
some positive and some not. It’s a lot like the reality of being married.
Ten years after David had my name tattooed on his arm, our story felt less like
a Gothic love story than a Raymond Carver story: doomed in the most quotidian
way. Ten years in, on my 33rd birthday, I found myself sobbing alone on a stoop
in Brooklyn.
I had quit acting because I could no longer navigate the dark stages and sets.
We had moved back to Brooklyn, my hometown, because my driving had become
untenable. We had gotten married and had a son, a long, lithe baby with
bee-stung eyes.
I was elated I could discern these details, and just as overjoyed to see the
round cheeks and bowed lips of my newborn daughter two years later. I watched
the color of their eyes deepen into blue, and seeing these changes suffused me
with gratitude. But I was suffused, too, with fear.
The year of our daughter’s birth marked the 10-year anniversary of my diagnosis,
and by then I had lost enough sight to be deemed legally blind. My eyesight had
closed in like the aperture on a camera, leaving me with extreme tunnel vision.
I constantly collided into people and things: monkey bars, fire hydrants,
cabinet doors left ajar. I developed cataracts that made it difficult for me to
fill out forms at the pediatrician’s office or, really, read anything at all.
I had been so busy making the most of my vision that I hadn’t prepared myself
for losing it. I never spoke of my disease, not even to the few people who knew
about it.
Concealing my vision loss was isolating and frightening. I was scared I would
walk the stroller into a manhole or lose my children at the playground, scared
of a future in which I could no longer see their faces.
My confidence had taken a hit, too. I gave up wearing heels because I fell in
them, gave up eyeliner because I couldn’t put it on straight, gave up reading
because I couldn’t make out the print. I felt like I wasn’t just losing my sight
but essential parts of what made me me.
Because I had no other resources in place for support, the onus fell to David,
who became my surreptitious seeing-eye guy. All of that, in addition to the
typical strains of raising two young children, was taxing on a marriage.
On my 33rd birthday, David and I splurged on a sitter and planned a dinner out
with friends. I spent an hour applying makeup in a magnifying mirror, only to
have David observe it was a little, um, uneven. He gifted me an Anne Lamott book
I couldn’t read.
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On the walk to the restaurant, we reopened the debate about whether or not to
have a third child.
I wanted to but was terrified I wouldn’t be able to take care of the baby with
my failing vision. David told me he would follow my lead, but he didn’t see how
we would possibly make it work. Our resources (money, time, and yes, vision)
were already so limited.
Halfway to the restaurant, our discussion developed into an argument, which
ended with David storming off and telling me to go to the party without him. I
stopped in my tracks, crumpled onto the nearest stoop and sobbed.
I wasn’t helpless. I could find my way home. But I couldn’t go to the party
without him. I couldn’t see well enough to find my friends or read the menu. I
needed David and he resented it and I resented his resentment.
I remembered how I had told him I would go blind with a bang, not a whimper, and
how he had promised we would always be together in darkness and in light. It
seemed like we’d both been wrong.
Some minutes later, David’s big brown boots, the ones I always tripped over when
he left them by the door, stepped into frame.
“You can’t just leave me,” I said, “I need you.”
“I know,” he said.
“I hate it.”
“So do I.”
Then he took my hand and said we’d figure it out.
We’re still figuring it out. The thing about slowly losing something that feels
indispensable is you’re constantly adjusting to the loss. As soon as you find a
comfortable balance, something shifts and you have to recalibrate.
Not long after my birthday, I called the New York State Commission for the
Blind, which taught me how to use a mobility cane and adaptive technology. I got
a magnifier so I didn’t need David to measure the children’s Tylenol or adjust
the thermostat. I read the Anne Lamott book, easily enlarged on the e-reader
David gave me for Christmas.
I reclaimed many abilities I had lost and started to make peace with what I had
to let go.
A year later, David took me to dinner and said he had something to tell me. His
face was hazy in the candlelight, but I could see his mouth breaking into a
smile.
“I think we should have another baby,” he said.
I blinked. “But what about — — ”
David took my hand and cut me off: “We’ll figure it out.”
He spoke with the same certainty that made him tattoo my name on his arm so long
ago. His faith bred faith in me. We would have another child, and it would be
hard and spectacular, and we would be in it together.
Together in the Gothic romance moments and in the Raymond Carver moments.
Together in moments glorious and tedious. Whatever else it was — poetic, prosaic
and everything in between — our story would be ours to share.
Nicole C. Kear, who lives in Brooklyn, is the author of the memoir “Now I See
You.”
A version of this article appears in print on March 22, 2015, on page ST6 of the
New York edition with the headline: Together Always, in Darkness and in Light.
