美國生活：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且無法治愈的病癥——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，簡稱CCHS)的疾病，病患睡眠時無法呼吸，有時醒著也無法呼吸。雖然這種疾病可以通過治療進行控制，但我們的兒子可能需要依靠呼吸機度過余生。

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.

這部紀錄片記錄了我們成為父母頭幾個月的經歷——我和妻子瑪格達(Magda)開始面對我們的新生活。利奧最終從醫(yī)院回到家里，隨之而來的是一系列醫(yī)療設備，我們努力克服恐懼，慢慢適應我們的境遇。我們對利奧的感覺也慢慢改變了：他從一個“詛咒”(疾病名稱的一部分)，一個有著很多嘈雜醫(yī)療設備的外星生物變成了我們親愛的兒子，現(xiàn)在沒有他，我們無法正常生活下去。

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難性時期。但拍攝這部紀錄片對我們有很大的幫助。它讓我們堅持下去，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。當時，我們不確定我們是否會向別人展示這部紀錄片，這是一部非常私密、私人的影片。但幾個月后，我意識到我們經歷了一個普遍的應對障礙的過程，即便這個障礙起初看似無法克服。我當時覺得，我們應該與其他人分享這個經歷。我決定拍完這部紀錄片。

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.

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