In his dreams, he twirls and swirls with his toes kissing the Earth.

在夢中 他的腳趾扭動旋轉著 好似親吻大地

Everything has motion, he claims, even a body as paralyzed as his own.

他堅持所有事情都有其意志，就算是身體癱瘓的人

This man is my father.

他 是我的父親

Three years ago, when I found out that my father had suffered a severe stroke in his brain stem,

三年前 當我發現我父親受腦幹中風的病痛所折磨

I walked into his room in the ICU at the Montreal Neurological Institute and found him lying deathly still,

我走進了他的房間 位於蒙特利爾神經學研究所的加護病房 看著他如死人般僵硬地躺著

tethered to a breathing machine.

被呼吸器束縛著

Paralysis had closed over his body slowly,

癱瘓漸漸削弱他的身軀

beginning in his toes, then legs, torso, fingers and arms.

從他的腳趾 然後腿 軀幹 手指 手臂

It made its way up his neck, cutting off his ability to breathe, and stopped just beneath the eyes.

漸漸延伸至脖子 並剝奪了呼吸能力 眼睛以下的身體機能停止了運作

He never lost consciousness.

他並未失去意識

Rather, he watched from within as his body shut down, limb by limb, muscle by muscle.

反而 他看著自己的身體機能漸漸衰弱 四肢一個個癱軟 肌肉一寸寸無力

In that ICU room, I walked up to my father's body,

在加護病房裡 我走到父親身旁

And with a quivering voice and through tears, I began reciting the alphabet.

我流著淚 用顫抖著聲音 朗誦字母

A, B, C, D, E, F, G, H, I, J, K. At K, he blinked his eyes.

聽到K時，他眨了一下眼睛

I began again. A, B, C, D, E, F, G, H, I.

我又再念了一次字母

He blinked again at the letter I, then at T, then at R, and A: Kitra.

他在I時眨了一次，接著在T, R, A, 那是我的名字 Kitra

He said "Kitra, my beauty, don't cry. This is a blessing."

他說 Kitra 我的美人兒 別哭 這是一個祝福

There was no audible voice, but my father called out my name powerfully.

雖然父親無法發出實體的聲音 但他充滿力量地喊出我的名字

Just 72 hours after his stroke, he had already embraced the totality of his condition.

72小時候，他已經能完全地接受他的生理狀態

Despite his extreme physical state,

雖然他的身體狀況如此嚴重

he was completely present with me, guiding, nurturing,

他與我同在 指引我 養育我

and being my father as much if not more than ever before.

是個很棒的父親 一如往常

Locked-in syndrome is many people's worst nightmare.

閉鎖綜合症是很多人的噩夢

In French, it's sometimes called "maladie de l'emmuré vivant.

法文來說，他被稱作"maladie de l'emmuré vivant."

Literally, "walled-in-alive disease."

字面上 就是指"被關在牆內但卻活著的病"

For many people, perhaps most, paralysis is an unspeakable horror,

對大多數人來說 癱瘓是個無法形容的恐懼

but my father's experience losing every system of his body was not an experience of feeling trapped,

但在我父親的經歷中 失去所有身體機能 並沒有因此受困

but rather of turning the psyche inwards, dimming down the external chatter, facing the recesses of his own mind,

他的靈魂未因而封閉 他不理會外頭喧囂 面對自己內心深處

and in that place, falling in love with life and body anew.

並因此重新愛上他的生活與身體

As a rabbi and spiritual man dangling between mind and body,

作為一位具靈性的猶太教教士 在軀體與心智上徘徊

life and death, the paralysis opened up a new awareness for him.

活著死去 癱瘓為他啟打開了一個全新的意識

He realized he no longer needed to look beyond the corporeal world in order to find the Divine.

他明白 他已經不需要在肉體世界中尋找上帝

"Paradise is in this body. It's in this world," he said.

他說 天堂就在我們的身體中 它就活在這個世界上

I slept by my father's side for the first four months, tending as much as I could to his every discomfort,

在前四個月 我睡在父親旁 盡我可能小心地照料他 照顧他的不適

understanding the deep human psychological fear of not being able to call out for help.

了解人們最深的擔憂是無法求援

My mother, sisters, brother and I, we surrounded him in a cocoon of healing.

我的媽媽 姊姊 哥哥 和我 我們圍繞在父親身旁 像個正在療育的繭

We became his mouthpiece,

我們成為他的代言人

spending hours each day reciting the alphabet as he whispered back sermons and poetry with blinks of his eye.

整天復誦著字母 父親透過眨眼輕訴佈道與詩歌

His room, it became our temple of healing.

他的房間成為我們治癒的教堂

His bedside became a site for those seeking advice and spiritual counsel, and through us,

他的床邊成為人們諮詢意見與精神忠告的場所 透過我們

my father was able to speak and uplift, letter by letter, blink by blink.

我的父親得以訴說 透過字母 透過眨眼

Everything in our world became slow and tender as the din,

我們世界變得緩慢而溫柔

drama and death of the hospital ward faded into the background.

因為醫院病房傳來的喧囂 戲劇性事件 死亡顯得暗淡無光

I want to read to you one of the first things that we transcribed in the week following the stroke.

我想要給你們聽一段我們從父親中風後轉錄的句子

He composed a letter, addressing his synagogue congregation, and ended it with the following lines:

他寫了一封信 向猶太教會堂聚眾演說 他最後以這段話作結

"When my nape exploded, I entered another dimension: inchoate, sub-planetary, protozoan.

當我的頸背無知覺 我進入了另一個次元 原始的 原生的

Universes are opened and closed continually.

宇宙不斷地開闔

There are many when low, who stop growing.

當低谷來臨 萬物便停止生長

Last week, I was brought so low, but I felt the hand of my father around me, and my father brought me back."

上週 我處於低谷 但我感受到上帝在身旁 且祂將我帶回來

When we weren't his voice, we were his legs and arms.

當我們不是他的聲音 我們成為他的雙腿與雙臂

I moved them like I know I would have wanted my own arms and legs to be moved were they still for all the hours of the day.

我移動著四肢 我知道它們會在我的意志下移動

I remember I'd hold his fingers near my face, bending each joint to keep it soft and limber.

我記得我握著他的手指 靠在臉旁 彎曲著手指關節 讓它能保持柔軟

I'd ask him again and again to visualize the motion,

我請他一遍又一遍 在心裡模擬這些動作

to watch from within as the finger curled and extended, and to move along with it in his mind.

看著他的手指做伸展與彎曲的動作 了解他想表達的內容

Then, one day, from the corner of my eye, I saw his body slither like a snake,

有一天 從眼角的餘光 我看到他的身體像條蛇般的滑動

an involuntary spasm passing through the course of his limbs.

一種無意識的痙攣穿過他的四肢

At first, I thought it was my own hallucination,

一開始 我以為是我的幻想

having spent so much time tending to this one body, so desperate to see anything react on its own.

是因為花費許多時間照顧他 如此渴望地看到他的身體有任何反應

But he told me he felt tingles, sparks of electricity flickering on and off just beneath the surface of the skin.

但他告訴我 他感到刺痛 電流像火花般 在皮膚下竄動著

The following week, he began ever so slightly to show muscle resistance.

接下來的幾周 他開始展現輕微的肌肉耐力

Connections were being made.

身體開始有了連結

Body was slowly and gently reawakening, limb by limb, muscle by muscle, twitch by twitch.

身體漸漸地重新甦醒 從一個個四肢 從一寸寸肌肉 一次次的抽搐

As a documentary photographer, I felt the need to photograph each of his first movements like a mother with her newborn.

身為紀錄片攝影師 我拍攝了他漸漸甦醒的每一個動作 就像是媽媽在為初生的嬰孩記錄生命

I photographed him taking his first unaided breath,

我拍下了他的第一口 無須機器輔助的呼吸

the celebratory moment after he showed muscle resistance for the very first time,

我拍下了他因頭一次展現肌肉耐力而慶祝的時刻

the new adapted technologies that allowed him to gain more and more independence.

新的適應技術讓他獲得更多身體自主能力

I photographed the care and the love that surrounded him.

我紀錄了陪伴在他身邊的關懷與愛

But my photographs only told the outside story of a man lying in a hospital bed attached to a breathing machine.

但我的相片僅能訴說關於一個男人外表的故事 ─ 躺在醫院的床上 靠著呼吸器呼吸

I wasn't able to portray his story from within, and so I began to search for a new visual language,

我無法描繪他的內心故事 因此我開始尋找著新的視覺語言

one which strived to express the ephemeral quality of his spiritual experience.

記錄著 我父親在短暫經歷所極力表達的精神

Finally, I want to share with you a video from a series that I've been working on that tries to express the slow,

最後 我想和你們分享我正在參與的系列錄影中的其中一集

in-between existence that my father has experienced.

它試著傳達我父親生命中一段緩慢的經歷

As he began to regain his ability to breathe,

當他重新開始靠著自己的力量來呼吸

I started recording his thoughts, and so the voice that you hear in this video is his voice.

我開始錄下他的想法 因此你們聽到的聲音就是他的聲音

You have to believe you're paralyzed to play the part of a quadriplegic.

你會相信你是四肢癱瘓者的一部分

I don't. In my mind, and in my dreams every night I Chagall-man float over the city twirl and swirl with my toes kissing the floor.

我並非如此 在我的腦海和夢中 我像夏卡爾般 (猶太籍畫家) 漂浮在城市上 旋轉著 腳趾親吻著大地

I know nothing about the statement of man without motion.

我對於”沒有活動能力的人”這樣的陳述感到不解

Everything has motion. The heart pumps. The body heaves. The mouth moves. We never stagnate. Life triumphs up and down.

所有事情都有其運作的意志 心臟跳動著 身體起伏著 嘴巴張闔著 我們不會停滯 人生的成功總是起起伏伏

For most of us, our muscles begin to twitch and move long before we are conscious,

對大多數的人來說 在我們有意識時 我們肌肉就可以移動扭動著

but my father tells me his privilege is living on the far periphery of the human experience.

但我的父親告訴我 擁有人類認知以外的經驗是一件特別的恩典

Like an astronaut who sees a perspective that very few of us will ever get to share,

像是太空人看到的視野 是我們多數人無法看到、分享的

he wonders and watches as he takes his first breaths and dreams about crawling back home.

他因為吸進第一口空氣而感到驚奇 他夢想著爬回家

So begins life at 57, he says. A toddler has no attitude in its being, but a man insists on his world every day.

他說 生命從57歲開始 一個蹣跚學步的孩子對於生命的初始是沒有什麼看法的 但這個男人堅持著過好每個日子

Few of us will ever have to face physical limitations to the degree that my father has,

多數的我們無須面對像我父親那樣程度的生理限制

but we will all have moments of paralysis in our lives.

但生命中總有些讓我們癱瘓的時刻

I know I frequently confront walls that feel completely unscalable,

我知道我常面對那些無法攀登的牆

but my father insists that there are no dead ends.

但我父親堅持 生命裡沒有死胡同

Instead, he invites me into his space of co-healing to give the very best of myself, and for him to give the very best of himself to me.

相反的 他邀請我進入他的共同療癒的空間 ─ 讓我展現最好的自己 對我展現最好的他

Paralysis was an opening for him.

對他來說 癱瘓是個開始

It was an opportunity to emerge, to rekindle life force, to sit still long enough with himself so as to fall in love with the full continuum of creation.

這是個擺脫的機會 重新燃起生命的力量 為了自己而久坐著 愛上持續的創造力

Today, my father is no longer locked in.

今天 我的父親不再被囚禁

He moves his neck with ease, has had his feeding peg removed, breathes with his own lungs, speaks slowly with his own quiet voice,

他自在地轉動脖子 移除餵食桶 用自己的肺呼吸著 慢慢地用他安靜的嗓音說著話

and works every day to gain more movement in his paralyzed body.

並且努力地讓曾癱瘓的身軀可以有更多的動作

But the work will never be finished. As he says, "I'm living in a broken world, and there is holy work to do."

工作永遠不會結束 就像他說的 我存活於一個破碎的世界 有很多神聖的工作要做呢

Thank you.

謝謝