美國(guó)生活：被詛咒的生命中看到希望

‘Our Curse’

被詛咒的生命中看到希望

Four years ago, my newborn son, Leo, was given a diagnosis of a very rare and incurable disorder known as Ondine’s Curse. Also called Congenital Central Hypoventilation Syndrome (C.C.H.S.), the disorder prevents the thousand or so people known to have been born with it from breathing while asleep, and sometimes also while awake. Though the disorder is manageable when treated, our son is likely to need a ventilator for the rest of his life.

四年前，我剛出生的兒子利奧(Leo)被診斷患有一種非常罕見(jiàn)且無(wú)法治愈的病癥——奧丁的詛咒(Ondine’s Curse)。目前已知有大約1000人出生時(shí)就患有這種又被稱為先天性中樞性低通氣綜合征(Congenital Central Hypoventilation Syndrome，簡(jiǎn)稱CCHS)的疾病，病患睡眠時(shí)無(wú)法呼吸，有時(shí)醒著也無(wú)法呼吸。雖然這種疾病可以通過(guò)治療進(jìn)行控制，但我們的兒子可能需要依靠呼吸機(jī)度過(guò)余生。

This documentary follows my first few months of parenthood — as my wife, Magda, and I confronted the realities of our new life. After Leo finally came home from the hospital, with a collection of medical equipment, we worked hard to tame our fears and slowly adapted to our circumstances. Gradually our perception of Leo changed, too: He evolved from a “curse” (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.

這部紀(jì)錄片記錄了我們成為父母頭幾個(gè)月的經(jīng)歷——我和妻子瑪格達(dá)(Magda)開(kāi)始面對(duì)我們的新生活。利奧最終從醫(yī)院回到家里，隨之而來(lái)的是一系列醫(yī)療設(shè)備，我們努力克服恐懼，慢慢適應(yīng)我們的境遇。我們對(duì)利奧的感覺(jué)也慢慢改變了：他從一個(gè)“詛咒”(疾病名稱的一部分)，一個(gè)有著很多嘈雜醫(yī)療設(shè)備的外星生物變成了我們親愛(ài)的兒子，現(xiàn)在沒(méi)有他，我們無(wú)法正常生活下去。

That period of our lives was depressing and devastating. But shooting this film helped us a great deal. It kept us going; instead of succumbing to depression, we could direct our energy into something creative. At the time, we were not sure if we were going to show this film to anyone – it felt much too intimate and private. However, after a few months I realized that we had gone through the universal process of coping with any obstacle, even one that seems impossible at first. It was then that I felt that we should share this experience with others. I decided to complete the film.

這是我們生活中一段非常壓抑的災(zāi)難性時(shí)期。但拍攝這部紀(jì)錄片對(duì)我們有很大的幫助。它讓我們堅(jiān)持下去，而不是被抑郁打敗，我們可以將能量投入到有創(chuàng)意的事情中。當(dāng)時(shí)，我們不確定我們是否會(huì)向別人展示這部紀(jì)錄片，這是一部非常私密、私人的影片。但幾個(gè)月后，我意識(shí)到我們經(jīng)歷了一個(gè)普遍的應(yīng)對(duì)障礙的過(guò)程，即便這個(gè)障礙起初看似無(wú)法克服。我當(dāng)時(shí)覺(jué)得，我們應(yīng)該與其他人分享這個(gè)經(jīng)歷。我決定拍完這部紀(jì)錄片。

For me, the most important thing in editing this film was to trace our emotions as closely as possible and to present the whole story honestly, as we really experienced it. We wanted to show that that even the worst moments of life can be turned into something positive, provided you do not lose hope. For us, the story of our family is one of overcoming the worst, and ultimately, of being truly grateful for what we have.

對(duì)我來(lái)說(shuō)，剪輯過(guò)程中最重要的事情是盡可能仔細(xì)地呈現(xiàn)我們的感情，真誠(chéng)地展現(xiàn)整個(gè)故事，將我們的經(jīng)歷如實(shí)呈現(xiàn)。我們希望展示的是，即便是生活中最糟糕的時(shí)刻都可以轉(zhuǎn)變成積極的事情，前提是不要放棄希望。對(duì)我們來(lái)說(shuō)，我們家的故事是一段克服困難的故事，最終，這段經(jīng)歷讓我們真的非常感激我們所擁有的一切。