美国生活：被诅咒的生命中看到希望

‘Our Curse’

被诅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，我刚出生的儿子利奥(Leo)被诊断患有一种非常罕见且无法治愈的病症——奥丁的诅咒(Ondine’s Curse)。目前已知有大约1000人出生时就患有这种又被称为先天性中枢性低通气综合征(Congenital Central Hypoventilation Syndrome，简称CCHS)的疾病，病患睡眠时无法呼吸，有时醒着也无法呼吸。虽然这种疾病可以通过治疗进行控制，但我们的儿子可能需要依靠呼吸机度过余生。

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.

这部纪录片记录了我们成为父母头几个月的经历——我和妻子玛格达(Magda)开始面对我们的新生活。利奥最终从医院回到家里，随之而来的是一系列医疗设备，我们努力克服恐惧，慢慢适应我们的境遇。我们对利奥的感觉也慢慢改变了：他从一个“诅咒”(疾病名称的一部分)，一个有着很多嘈杂医疗设备的外星生物变成了我们亲爱的儿子，现在没有他，我们无法正常生活下去。

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.

这是我们生活中一段非常压抑的灾难性时期。但拍摄这部纪录片对我们有很大的帮助。它让我们坚持下去，而不是被抑郁打败，我们可以将能量投入到有创意的事情中。当时，我们不确定我们是否会向别人展示这部纪录片，这是一部非常私密、私人的影片。但几个月后，我意识到我们经历了一个普遍的应对障碍的过程，即便这个障碍起初看似无法克服。我当时觉得，我们应该与其他人分享这个经历。我决定拍完这部纪录片。

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.

对我来说，剪辑过程中最重要的事情是尽可能仔细地呈现我们的感情，真诚地展现整个故事，将我们的经历如实呈现。我们希望展示的是，即便是生活中最糟糕的时刻都可以转变成积极的事情，前提是不要放弃希望。对我们来说，我们家的故事是一段克服困难的故事，最终，这段经历让我们真的非常感激我们所拥有的一切。