在一起

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

At 22， David was a novelist just starting his career， and I knew if I framed my plight as poetic， hed 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 couldnt 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. 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 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 encroaching blindness was more blessing than curse， because it galvanized us to live with urgency. The blindness was poetic because it hadnt happened yet.

In reality， its tedious， draining， messy. It changes you in surprising ways， some positive and some not. Its 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 beestung 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 daughters 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 pediatricians office or， really， read anything at all.

I had been so busy making the most of my vision that I hadnt 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 couldnt put it on straight， gave up reading because I couldnt make out the print. I felt like I wasnt 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 couldnt 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 wouldnt be able to take care of the baby with my failing vision. David told me he would follow my lead， but he didnt 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 wasnt helpless. I could find my way home. But I couldnt go to the party without him. I couldnt 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 wed both been wrong.

Some minutes later， Davids big brown boots， the ones I always tripped over when he left them by the door， stepped into frame.

“You cant 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 wed 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 didnt need David to measure the childrens 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： “Well 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(huì)瞎掉，這沒(méi)有什么好辦法可言。我從所有的糟糕辦法中選了個(gè)最好的。

戴維22歲時(shí)剛開(kāi)始寫(xiě)小說(shuō)，我知道如果我以詩(shī)意的方式來(lái)描繪這個(gè)困境，他會(huì)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(shuō)得像哥特式的小說(shuō)一樣。

我是這樣開(kāi)始講述的，三年前，19歲，我發(fā)現(xiàn)我晚上看不見(jiàn)星星。這看起來(lái)是個(gè)很微不足道的細(xì)節(jié)，但其實(shí)是不可治愈的視網(wǎng)膜退化疾病的初始癥狀。醫(yī)生說(shuō)我會(huì)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(jué)，然后就是中央視覺(jué)。

我以積極的態(tài)度來(lái)結(jié)束這個(gè)故事：我是這樣描述的，失去視力教會(huì)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(kāi)始戀愛(ài)，我很緊張，想知道他會(huì)對(duì)我的坦白作何反應(yīng)。他的回應(yīng)大方而有詩(shī)意，恰似故事本身那樣。

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

我在大學(xué)的最后一個(gè)學(xué)期認(rèn)識(shí)戴維，我們都是英語(yǔ)和戲劇專(zhuān)業(yè)的學(xué)生。我喜歡他因?yàn)樗斆鞫伙@擺，幽默而不刻薄。他的堅(jiān)定讓我在確診后首次有了安全感。

他在一個(gè)南方小城鎮(zhèn)長(zhǎng)大，一直想居住在加利福尼亞州，但一直沒(méi)下決心——直到我和他一起跨出這一步。

在洛杉磯，戴維幫我通過(guò)試鏡，我為他整理稿子。

周末，我們把他那輛破舊的敞篷車(chē)車(chē)頂打開(kāi)，開(kāi)上太平洋海岸高速路，大聲播放著音樂(lè)。我們都覺(jué)得，金黃色的山看起來(lái)就像沉睡著的獅子的背部。戴維單手開(kāi)了好幾個(gè)小時(shí)的車(chē)，另一只手緊握著我的手。

我們?cè)谝黄鸬纳罘浅＠寺?，漸漸逼近的失明給我們更多的是祝福，而不是詛咒，因?yàn)樗?lì)我們珍惜現(xiàn)在的生活。失明很有詩(shī)意，只因?yàn)樗€沒(méi)發(fā)生。

實(shí)際的情況就是乏味、令人疲倦、混亂。它以讓人吃驚的方式改變你，有些改變是好的，有些則是壞的。這與現(xiàn)實(shí)中的婚姻很相似。

戴維把我的名字紋在手臂上的十年后，與哥特式愛(ài)情小說(shuō)相比，我們的故事更接近雷蒙德·卡佛的小說(shuō)風(fēng)格——以最普通的方式消逝。第十年，我33歲生日那天，我在布魯克林的門(mén)廊上獨(dú)自抽泣。

我放棄了表演，因?yàn)槲乙巡荒茉谄岷诘奈枧_(tái)和設(shè)備中辨認(rèn)方位。我們搬回了我的家鄉(xiāng)布魯克林， 因?yàn)槲议_(kāi)車(chē)很不安全。我們結(jié)婚了，有一個(gè)兒子，天真活潑，眼睛又大又圓。

我很高興我能分辨出這些細(xì)節(jié)，兩年后我女兒出生，我也很興奮看到了她圓圓的臉頰和彎彎的嘴唇。我看著他們眼睛深處的藍(lán)色，看見(jiàn)這些變化讓我充滿(mǎn)了感激。但我同時(shí)也充滿(mǎn)了恐懼。

我女兒出生那年正是我確診十周年的時(shí)候，那時(shí)候我的視力衰退嚴(yán)重，被認(rèn)定為失明。我的視力像攝像機(jī)的孔徑般縮小，只剩下極弱的孔狀視力。

我常常撞向人或其他東西：?jiǎn)胃?、消防栓、打開(kāi)的柜門(mén)。我還患上了白內(nèi)障，這讓我難以在兒科醫(yī)生的辦公室里填寫(xiě)表格，其實(shí)是根本看不到表格上的字。

我一直忙于盡可能多地利用自己的視力，而沒(méi)有做好失去視力的準(zhǔn)備。我從不向別人提起我的病，包括那些本來(lái)就略知一二的人。

我的自信心也少了，我不再穿高跟鞋因?yàn)槲視?huì)摔跤，不畫(huà)眼線因?yàn)槲耶?huà)不直，不看書(shū)因?yàn)槲铱床灰?jiàn)印刷字體。我感覺(jué)我不僅僅是失去了視力，還失去了生活中的重要部分。

由于我沒(méi)有其他外界的幫助，這個(gè)責(zé)任就落到了戴維頭上，他成了我隱秘的眼睛。所有這一切，還有撫養(yǎng)兩個(gè)小孩的常見(jiàn)壓力，都依靠著一場(chǎng)婚姻來(lái)維持。

我33歲生日那天，戴維和我奢侈了一把，請(qǐng)了一位臨時(shí)保姆，準(zhǔn)備和朋友外出吃晚餐。我花了一個(gè)小時(shí)在一面放大鏡前化妝，但戴維卻看出來(lái)有點(diǎn)不對(duì)稱(chēng)。他送了我一本安·拉莫特的書(shū)，但我讀不了。

我們?cè)诓叫兄溜埖甑穆飞嫌钟懻摿耸欠褚谌齻€(gè)孩子。

我想要但又害怕我因視力逐漸衰退而不能照顧好嬰兒。戴維說(shuō)他聽(tīng)我的，但似乎很難做到，我們的資源（錢(qián)、時(shí)間、還有視力）很有限。

半路上，我們的討論發(fā)展成了爭(zhēng)吵，最后，戴維怒氣沖沖地走了，讓我自己去聚餐。我停下來(lái)，蜷縮在最近的門(mén)廊上，獨(dú)自抽泣。

我并非感到無(wú)助，我可以自己回家。但我不能獨(dú)自參加聚餐，我看不清我的朋友在哪，看不清菜單。我需要戴維，他討厭這一點(diǎn)，而我為他的不滿(mǎn)感到生氣。

我記得我跟他說(shuō)過(guò)我要在振奮中瞎掉，不要在哭泣中瞎掉，他也說(shuō)過(guò)不管是黑夜還是白天，我們永遠(yuǎn)在一起。我們似乎都錯(cuò)了。

幾分鐘后，戴維那雙棕色大靴子——他放在門(mén)口時(shí)我常常被它們絆倒，出現(xiàn)在我的視線中。

“你不能就那樣走掉，”我說(shuō)，“我需要你?！?/p>

“我知道，”他說(shuō)。

“我討厭這樣?！?/p>

“我也是?！?/p>

然后他握著我的手說(shuō)，我們會(huì)想辦法解決的。

生日過(guò)后，我致電紐約盲人委員會(huì)，他們教我如何使用移動(dòng)手杖和適應(yīng)技巧。我使用了放大器后就不需要戴維來(lái)量孩子們吃泰諾的量和調(diào)溫度調(diào)節(jié)器了。我用戴維送我的圣誕禮物——電子閱讀器，可以輕松地閱讀安·拉莫特的書(shū)。

我重新獲得了很多失去了的能力，并開(kāi)始平和地看待我不得不失去的東西。

一年后，戴維帶我外出晚餐時(shí)說(shuō)要告訴我一件事。他的臉在燈光下很模糊，但我能看到他的嘴在微笑。

“我想我們應(yīng)該再要一個(gè)孩子，”他說(shuō)。

我眨了眨眼睛?！暗?/p>

戴維握著我的手，打斷我說(shuō)：“我們會(huì)想辦法的。”

他語(yǔ)氣堅(jiān)定，就像多年前他把我的名字紋在手臂上時(shí)一樣。他的信心助長(zhǎng)了我的信心。我們?cè)僖粋€(gè)孩子，這雖然困難卻多么美好，我們會(huì)一起面對(duì)。