在一起——不管白天黑夜

There is no good way to tell a new guy in your life that you’re going blind. I chose the best of 1）lousy options.

At 22， David was a novelist just starting his career， and I knew if I framed my 2）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 3）degenerative 4）retinal disease. The doctor told me I would slowly lose my eyesight over the next 10 to 15 years—first my nighttime and 5）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， 6）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 7）pretentious， funny but never mean. There was solidity to him and it made me feel safe for the first time since my diagnosis.

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 8）convertible and drove up the Pacific Coast Highway， music blaring. 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 9）encroaching blindness was more blessing than curse， because it 10）galvanized us to live with urgency. The blindness was poetic because it hadn’t happened yet.

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 11）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 12）beestung eyes.

I was 13）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 14）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 15）aperture on a camera， leaving me with extreme tunnel vision.

I constantly 16）collided into people and things： monkey bars， fire hydrants， cabinet doors left ajar. I developed 17）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.

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 18）onus fell to David， who became my 19）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.

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.

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 20）Tylenol or adjust the 21）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.

要告訴新男友自己眼睛將會瞎掉，這沒有什么好辦法可言。我從所有的糟糕辦法中選了個最好的。

戴維22歲時剛開始寫小說，我知道如果我以詩意的方式來描繪這個困境，他會被迷住的，至少敘述方式讓他著迷。因此，我在黑暗中躺在他身邊，把我的故事說得像哥特式的小說一樣。

我是這樣開始講述的，三年前，19歲，我發(fā)現(xiàn)我晚上看不見星星。這看起來是個很微不足道的細節(jié)，但其實是不可治愈的視網(wǎng)膜退化疾病的初始癥狀。醫(yī)生說我會在10至15年內(nèi)逐漸喪失視力——首先是夜間視力和周邊視覺，然后就是中央視覺。

我以積極的態(tài)度來結(jié)束這個故事：我是這樣描述的，失去視力教會我真正地用眼睛去看。我要在振奮雷鳴中瞎掉，不要在軟弱哭泣中瞎掉，我要在這十年里看更多的東西，比大多數(shù)人一生所看的都要多。

那都是真的，但只是故事的一部分，美好的部分。

我們才剛開始戀愛，我很緊張，想知道他會對我的坦白作何反應。他的回應大方而有詩意，恰似故事本身那樣。

我們下次見面時，他把我的名字寫在了他的手臂上。六個擦洗不掉的小寫字母印刻在皮膚上。我欣賞著這個紋身時，他說我照亮了他的黑夜，而他也會照亮我的黑夜。他說不管發(fā)生什么事情，我們都會一起面對。他會一直在我身邊。

我在大學的最后一個學期認識戴維，我們都是英語和戲劇專業(yè)的學生。我喜歡他因為他聰明而不顯擺，幽默而不刻薄。他的堅定讓我在確診后首次有了安全感。……