一箇中國矽肺患者的真愛故事

He Quangui spends his days in a bed connected to a battered oxygen machine that pumps air into his lungs. The monotonous sound is punctuated only by his gasping cough. Like many of his fellow villagers in a mountainous area of Shaanxi Province in China, he answered the government’s call to leave his farm and make a better living as a migrant worker in the 1990s.

何全貴成天躺在牀上，身體連接着一個把空氣輸送到他肺裏的破舊的氧氣機。機器發出單調的聲響，時不時穿插着他喘不上氣來的咳嗽聲。上世紀90年代，和很多居住在陝西山區裏的老鄉一樣，他響應政府號召放棄務農，爲謀得更好的生計而外出打工。

He went to work in an illegal gold mine, which, while helping fuel China’s growing economy, cost him dearly: He has silicosis, a form of pneumoconiosis, China’s most common occupational disease.

他去了一家非法金礦工作。這樣的金礦爲中國的經濟增長提供了動力，同時也讓他付出了沉重的代價。何全貴患上了矽肺病。這是中國最普遍的職業病塵肺病的一種。

Today, when he leaves his bed, he often collapses, unable to breathe. There are treatments that could prolong his life and ease the suffering, but he has neither money nor benefits after his seven years working in the mines.

如今，只要他一下牀，就經常會癱軟在地，無法呼吸。通過治療可以延長他的生命，緩解痛楚。可是，儘管他在礦場工作了七年時間，他既沒錢，也不享有福利。

Had he not met the photographer Sim Chi Yin at his fruit stand in 2011, he would most likely be dead. She came to his remote village to document the ravages of lung disease among the men who worked as migrant miners. To make the story more immediate, she sought a dying miner to be the main character, and soon settled on Mr. . He learned he had silicosis in 2004. He lived in an old earthen house with his wife, Mi Shixiu, and their son, Jinbo. Together, they sold fruit; Ms. Sim stayed in a spare room above the stand, taking photos while trying to persuade the couple to let her into their lives. Though she started out doing a story about silicosis, she soon saw a different narrative.

如果不是2011年他在自家的水果攤遇到了攝影師沈綺穎(Sim Chi Yin)，他很可能已經離開了人世。沈綺穎來到他所在的偏遠村莊是爲了記錄肺病對外來礦工的摧殘。爲了突顯問題的緊迫性，需要尋找一個垂死的礦工作爲主角，她很快便選定了何全貴。何全貴在2004年得知自己患上了矽肺病。妻子米世秀、兒子何進波和他一起住在一間老舊的土房裏，全家人一起販賣水果。沈綺穎待在水果攤上面的一間空房裏，在攝影的同時，她嘗試着說服夫婦二人允許自己走進他們的生活。儘管一開始是想要講述有關矽肺病的故事，但是沈綺穎很快便發現了另一個角度。

“I realized this was not just a story about a dying man in a remote village in China,” she said. “It was a universal love story.”

“我意識到，這個故事不光是說中國的偏遠農村裏有一個垂死的人，”沈綺穎說。“這是一個普世的愛情故事。”

“Their love was so powerful and palpable and so pure,” she said. “Even now, they cuddle and play like teenagers.”

“他們之間的愛是如此的熱烈、外露和純粹。即便是現在，他們仍然會相互依偎，像少年一樣打鬧，”她說。

Ms. Sim returned home after a week with some photos and a sense that the project might not work out because the couple was not interested in being photographed over a long period. But six months later, Mr. He’s wife called, crying and desperate for help.

沈綺穎在拍攝了一週後返回家中。因爲夫婦倆對長期跟拍不感興趣，她感覺到計劃可能無法實現。然而，六個月後，何全貴的妻子打來了電話，絕望地哭訴着向沈綺穎求助。

Ms. Sim contacted a friend, an investigative journalist who ran an organization for poor people with silicosis. It arranged for a $1,600 grant so Mr. He could get treatment at a hospital. She flew to Xi’an and picked up Mr. He, who could not walk and had to be carried by his brother-in-law.

沈綺穎聯繫了一名調查記者。這位朋友開設的一家機構專爲患有矽肺病的貧困人士提供幫助。他們爲何全貴籌集了1萬元人民幣，讓他能夠入院接受治療。沈綺穎飛去西安接何全貴。他當時無法行走，只能由妹夫揹着。

She spent long days at the hospital as both “caretaker and court jester trying to lift his spirits,” she said. At night, she returned to her hotel room and sobbed. Depressed, Mr. He asked Ms. Sim to take him far away, kill him and dump his body if the treatment hospital stay was a turning point. Ms. Sim was no longer a stranger but, according to Mr. He, was his “savior.” From that point, she stayed in his home whenever she visited, and she became close to his family. Her intervention changed the story, and Ms. Sim acknowledges that some might find that unethical. But she felt the situation demanded action.

沈綺穎在醫院待了很長時間，“既是看護，又要插科打諢來振奮他的精神，”她說。夜裏，她會回到酒店房間裏啜泣。沮喪的何全貴曾說，如果治療失敗的話，想讓沈綺穎帶他走，殺了他，再把他的屍體扔掉。這次治療成爲了一個轉折點。對於何全貴而言，沈綺穎不再是一個陌生人，而是用他的話來說成了“救命恩人”。從那時起，不論何時到訪，沈綺穎都住在何全貴的家中，他們一家人和她的關係也變得親近了。沈綺穎的介入改變了這個故事，她自己也承認，有些人可能會覺得自己的行爲不符合職業道德，但是她認爲這是形勢所迫。

“I was a human being first and a photographer second,” she said. “As a documentary photographer, I want to bring about change around large issues, but given the opportunity to make a concrete change in one person’s life, it would be unconscionable not to do so.”

“我首先是一個人，然後纔是一個攝影師，”她說。“作爲一名紀實攝影師，我希望在大事上帶來改變，但如果有機會讓一個人的生活發生具體的變化，不去做的話就不對了。”

She has spent much of the last four years following Mr. He’s travails, living in his home and falling asleep in the next room listening to the drone of the oxygen machine. Once, she was awakened before dawn when Mr. He attempted suicide.

過去四年裏，沈綺穎用了大量時間記錄何全貴經歷的困苦。她住在何家，睡在隔壁屋子裏，聽着氧氣機的嗡嗡聲。有一次，當何全貴企圖在凌晨自殺時，她被驚醒了。

In her journal, Ms. Sim noted him saying: “I have completely given up hope this time. Moaning out loud, short of breath. If I were a rich man, I’d see it differently. I’d go to a hospital in the city and use the best drugs, and I’ll still be able to live for a few more years. But I don’t have the money.”Ms. Sim, who sometimes photographs for The New York Times, has turned her attention to getting Mr. He’s story out while he is still alive. Despite the powerful images, she has had few takers.

沈綺穎在日記裏寫道，何全貴說：“我這一次徹底不抱希望了。大聲哼哼、氣短。如果是個有錢人，就不一樣了。我會去城裏的醫院，用最好的藥，還能再多活幾年。但我沒錢。”有時會爲《紐約時報》拍攝圖片的沈綺穎，此時已經轉移了注意力，致力於在何全貴的有生之年，把他的故事刊登出來。儘管這些影像頗能打動人，但卻鮮有媒體接收。

“I’ve showed the photos and video to perhaps 15 or 20 editors, some of whom cried, but no one would publish it in print,” she said. “It’s not a sexy subject, and the photos aren’t highly aestheticized.”

“我給大概15或20個編輯看過照片和視頻。有些人都看哭了，但沒人願意刊登，”她說。“這不是一個迷人的話題，照片也沒有很高的美學價值。”

They are not over-processed, blurry black-and-white images, nor are they fine art portraits, she added.

她接着說，它們不是那種過度加工的朦朧的黑白照片，也不是精美的肖像照。

“This is a story that is not about me or my vision or my aesthetics,” she said. “It’s about a dying man and the impact on his family. It’s about this disease that’s China’s No. 1 occupational disease, period.”

“這個故事和我本人、我的見解或審美無關，”她說。“它講的是一個垂死的人，以及他的家庭遭受的影響。講的是中國的頭號職業病，就這樣。”

National Geographic is the only magazine that expressed serious interest in publishing it, though a 10-page layout was ultimately rejected for publication. Instead, a video on Mr. He was featured on its photo blog, Proof.

《國家地理》(National Geographic)是唯一認真考慮登出這個故事的刊物。但最終，10頁篇幅的版面還是沒能問世。不過，一段介紹何全貴的視頻，放在了雜誌網站的圖片博客Proof上。

Mr. He now has an inexpensive smartphone and uses social media to share health information with other miners with silicosis. He weighs less than 90 pounds but “is still hanging on,” Ms. Sim said. To keep his spirits up, she tells him that he must stay alive to see the impact of the videos and photo essay.

現在，何全貴有一部廉價的智能手機，能通過社交媒體和其他患矽肺病的礦工分享健康訊息。何全貴體重不到90磅（約合41公斤），但沈綺穎說，他“依然在堅持”。爲了讓他保持良好的精神狀態，沈綺穎對他說，他必須活着看到自己的視頻和圖片產生了什麼樣的影響。

The Chinese news and photo website Tencent published the photos and videos this month and raised $16,000 from readers for Mr. He, who can now go to a hospital for new treatments, repay some debts and fix his leaking roof.

本月，中文新聞和圖片網站騰訊刊發了相關照片和視頻，並從讀者那裏爲何全貴籌集到了10萬元人民幣。現在，何全貴能夠去醫院重新接受治療，還一部分債，再修補一下漏雨的屋頂。

Mr. He sent a text to Ms. Sim last week: “I didn’t think that I could hold on and live till now, that I would see this happening with my own eyes, that I would enjoy the fruits of this collaboration myself and have it prolong my life.”

上週，何全貴給沈綺穎發了一條短信：“沒想到我能堅持活到現在，能親眼看到這一切，能親身享受這種合作的果實，讓它延長我的生命。”