Charity Tillemann-Dick: After a lung transplant, an aria

譯者: Hsun Ying Tsai 審譯者: Yen-chung Nora Huang

You may not know this,

你或許不知道，

but you are celebrating an anniversary with me.

不過你現在正和我慶祝一個週年紀念日。

I'm not married,

我還沒結婚，

but one year ago today,

不過一年前的今天，

I woke up

在雙肺移植手術後，

from a month-long coma,

我從一個月長的

following a double lung transplant.

昏迷中清醒。

Crazy, I know. Insane.

我知道，這很瘋狂，很危險。

Thank you.

謝謝。

Six years before that,

在手術的六年前，

I was starting my career

我才剛開始我的事業，

as an opera singer in Europe,

在歐洲擔任一位歌劇歌手。

when I was diagnosed with

我被診斷出

idiopathic pulmonary hypertension --

患有"原發性肺動脈高血壓"---

also known as PH.

就是所知的PH(肺高血壓)。

It happens when there's a thickening

這種症狀發生在

in the pulmonary veins,

當肺靜脈血管增厚時，

making the right side of the heart

會讓右邊的心臟

work overtime,

超時工作，

and causing what I call

而造成我所說的

the reverse-Grinch effect.

反向鬼靈精效應(故事裡的鬼靈精心臟縮小)。

My heart was three-and-a-half sizes

我的心臟大上了

too big.

3.5倍，

Physical activity becomes very difficult

擁有這種症狀的人

for people with this condition,

身體活動變的很吃力，

and usually after two to five years,

通常二到五年後

you die.

就會死去。

I went to see this specialist,

我去找這症狀的專家，

and she was top-of-the-field

她是這領域的佼佼者，

and told me I had to stop singing.

而她告訴我該停止唱歌，

She said, "Those high notes are going to kill you."

她說：「那些高音符會害死你。」

While she didn't have any medical evidence

然而她沒有任何醫學上的證據

to back up her claim

可以證實她說的

that there was a relationship

歌劇詠歎調

between operatic arias

和PH

and pulmonary hypertension,

是有關連性的，

she was absolutely emphatic

她非常的確定

I was singing my own obituary.

我唱出的是自己的訃聞。

I was very limited by my condition, physically.

我完全受限於我身體的狀況，

But I was not limited when I sang,

但我唱歌時就毫無限制了。

and as air came up from my lungs,

當空氣從肺部升起

through my vocal cords

穿過我的聲帶

and passed my lips as sound,

透過我的雙唇變成音樂，

it was the closest thing I had ever come

那是我做過

to transcendence.

最棒的事了。

And just because of someone's hunch,

我不因為別人的直覺

I wasn't going to give it up.

而就這樣放棄歌唱，

Thankfully, I met Reda Girgis,

幸好我遇到瑞達．葛蓋斯，

who is dry as toast,

他挺無聊的，

but he and his team at Johns Hopkins

但是，他和他在約翰霍普金斯醫院裡的團隊

didn't just want me to survive,

希望我不只是只有存活下來，

they wanted me

他們希望我

to live a meaningful life.

過的是有意義的人生，

This meant making trade-offs.

意思就是我該做個取捨了。

I come from Colorado.

我從科羅拉多州來，

It's a mile high,

住在海拔一英里高的地方，

and I grew up there with my 10 brothers and sisters

和我的十個兄弟姐妹

and two adoring parents.

以及我很愛的爸媽一起成長。

Well, the altitude exacerbated my symptoms.

然而，這樣的高海拔加重了我的病情，

So I moved to Baltimore to be near my doctors

所以我搬到離我的醫生比較近的巴爾的摩港市，

and enrolled in a conservatory nearby.

就讀在附近的音樂學院。

I couldn't walk as much as I used to,

我沒辦法像以前一樣走的多，

so I opted for five-inch heels.

所以我選擇五吋高的高跟鞋。

And I gave up salt,

我不吃含鹽的食物，

I went vegan,

開始吃全素，

and I started taking huge doses of

也開始服用大量的

sildenafil,

昔多芬---

also known as Viagra.

就是大家所知的威爾剛。

(Laughter)

(笑聲)

My father and my grandfather were always looking for the newest thing

我的父親和祖父總是嘗試著在傳統及非傳統的

in alternative or traditional therapies

PH治療下

for PH,

找尋新的事物，

but after six months,

但六個月後，

I couldn't walk up a small hill. I couldn't climb a flight of stairs.

我無法走上小山丘，無法爬上一段樓梯．

I could barely stand up

我幾乎無法好好站著，

without feeling like I was going to faint.

而不覺得自己快要昏倒了。

I had a heart catheterization,

我有一個心導管，

where they measure this internal arterial pulmonary pressure,

醫生會在這心導管測出內部肺動脈壓力，

which is supposed to be between 15 and 20.

通常數據應該是15到20，

Mine was 146.

我的則是146。

I like to do things big,

我喜歡做大事，

and it meant one thing:

而這代表一件事，

there is a big gun treatment

有一種肺高血壓的重要治療

for pulmonary hypertension called Flolan,

叫作依前列醇，

and it's not just a drug;

這不只是種藥物，

it's a way of life.

也是種生活方式。

Doctors insert a catheter into your chest,

醫生在你的胸口放入導管

which is attached to a pump

連接著幫浦，

that weighs about four-and-a-half pounds.

大概4.5磅重，

Every day, 24 hours, that pump is at your side,

每一天，24小時，幫浦都在你的身旁，

administering medicine

供給藥物，

directly to your heart,

直達你的心臟。

and it's not

在很多方面來說，

a particularly preferable

這並不是一個

medicine in many senses.

特別推薦的藥物，

This is a list of the side effects:

這邊有一個副作用的清單，

if you eat too much salt,

如果吃太多鹽巴，

like a peanut butter and jelly sandwich,

像是花生醬和果醬三明治，

you'll probably end up in the ICU.

你可能就要待在加護病房了。

If you go through a metal detector,

如果你經過金屬探測器，

you'll probably die.

就可能會沒命。

If you get a bubble in your medicine --

如果你的藥有氣泡在裡頭---

because you have to mix it every morning --

因為每天早上必須要混合藥物---

and it stays in there,

然後氣泡留在藥裡，

you probably die.

你也許會沒命。

If you run out of medicine, you definitely die.

如果你的藥沒了，你一定會沒命。

No one wants to go on Flolan.

沒有人想要服用依前列醇，

But when I needed it,

但是，當我需要這種藥時，

it was a godsend.

這就像上天賜與的。

Within a few days, I could walk again.

幾天內，我可以再度的走起路來，

Within a few weeks, I was performing,

幾個禮拜內，我開始上台表演，

and in a few months,

幾個月內，

I debuted at the Kennedy Center.

我在甘迺迪中心首次亮相。

The pump was a little bit problematic when performing,

在表演時，這個幫浦會有些麻煩，

so I'd attach it to my inner thigh

所以我會把這個移到大腿內側，

with the help of the girdle and an ACE bandage.

用腰帶和繃帶固定者。

Literally hundreds of elevator rides

其實好多次

were spent with me alone

自己一個人搭著電梯時，

stuffing the pump into my Spanx,

會把幫浦塞進我的緊身衣裡，

hoping the doors wouldn't open unexpectedly.

希望電梯門不要突然打開。

And the tubing coming out of my chest

從我胸口突出的導管，

was a nightmare for costume designers.

對服裝設計師來說真是個夢靨啊。

I graduated from graduate school in 2006,

我在2006時從研究所畢業，

and I got a fellowship to go back to Europe.

也我拿到了一筆獎學金讓我可以回到歐洲。

A few days after arriving,

到歐洲的幾天後，

I met this wonderful, old conductor

我遇見了這位年邁又很棒的樂團指揮，

who started casting me in all of these roles.

他開始幫我選派角色。

And before long, I was commuting

不久前，我還在布達佩斯

between Budapest, Milan

米蘭和佛羅倫斯

and Florence.

三地往返，

Though I was attached

雖然我和，

to this ugly, unwanted,

這個難看、不受歡迎

high-maintenance, mechanical pet,

又很難搞的機器寵物連在一起，

my life was kind of like the happy part in an opera --

我的生命就像歌劇裡的開心的部分---

very complicated,

非常的複雜，

but in a good way.

不過是在好的方面。

Then in February

在2008年

of 2008,

的二月，

my grandfather passed away.

我的祖父過世了，

He was a big figure in all of our lives,

他在我們的心目中是重要的人物，

and we loved him very much.

我們也非常地愛他，

It certainly didn't prepare me

這件事當然讓我無法

for what came next.

為之後到來的事作準備。

Seven weeks later,

七個禮拜後，

I got a call from my family.

我接到一通家裡打來的電話，

My father had been in a catastrophic car accident,

我的父親遭遇一場非常嚴重的車禍，

and he died.

結果他就這樣死了。

At 24, my death would have been

在我24歲時，死亡對我來說，

entirely expected.

是無法預期到的，

But his --

但他的離去---

well, the only way I can articulate how it felt

唯一可以讓我訴說這個感受的狀況是

was that it precipitated

這件事造成

my medical decline.

我的身體狀況下降。

Against my doctors' and family's wishes,

不顧我的醫生和家人的期望，

I needed to go back for the funeral.

我一定要趕到喪禮，

I had to say goodbye

我必須要說聲再見，

in some way, shape or form.

不論是用什麼樣的方式或形式。

But soon I was showing signs of right-heart failure,

但是，很快的，我的右邊心臟出現的衰竭的訊號，

and I had to return to sea level,

我必須要回到海平面上，

doing so knowing

就是大家知道的

that I probably would never see my home again.

我可能再也無法看到我的家。

I canceled most of my engagements that summer,

我取消掉我那年夏天大部分的約會，

but I had one left in Tel Aviv, so I went.

不過我還有一個特拉維夫之約，所以我就去了。

After one performance,

在一場表演後，

I could barely drag myself

我幾乎無法自己

from the stage to the taxicab.

從舞台上走到計程車上，

I sat down and felt the blood

我坐了下來，感覺到血液

rush down from my face,

從臉上往下衝，

and in the heat of the desert,

身處在這個熾熱的沙漠，

I was freezing cold.

我卻感覺到寒冷，

My fingers started turning blue,

我的指尖開始發紫，

and I was like, "What is going on here?"

我在想「現在到底發生什麼事了?」

I heard my heart's valves

我感覺我心臟的瓣膜

snapping open and closed.

很用力地開開關關。

The cab stopped,

計程車停下後

and I pulled my body from it

我把我的身體從車內拖出來，

feeling each ounce of weight

走到電梯的路上，

as I walked to the elevator.

我感受到身體上的每一盎司的重量，

I fell through my apartment door

我倒在我的房門口，

and crawled to the bathroom

爬進浴室裡，

where I found my problem:

然後我發現問題了，

I had forgotten to mix in

我忘了混和

the most important part of my medicine.

我藥裡面最重要的部分，

I was dying,

我瀕臨頻死，

and if I didn't mix that stuff up fast,

而且要是我不趕快混和這些藥，

I would never leave that apartment alive.

我就無法活著走出這個房間了。

I started mixing,

我開始混和藥物，

and I felt like everything was going to fall out through one hole or another,

我覺得好像每一樣東西都要這個洞口或別的洞口掉出來，

but I just kept on going.

不過我就還是繼續調配藥物。

Finally, with the last bottle in and the last bubble out,

終於，最後一個罐子到進去，最後一個泡泡跑出來，

I attached the pump to the tubing

我把這個幫浦接上管子，

and lay there hoping it would kick in

然後躺在那，希望這個藥可以

soon enough.

快點生效，

If it didn't, I'd probably see my father

如果沒有的話，我想我有可能

sooner than I anticipated.

比我預期的還要快看到我爸。

Thankfully, in a few minutes,

感謝上天，幾分鐘內

I saw the signature hive-like rash

我看到蜂巢狀的疹出現

appear on my legs,

在我腿上，

which is a side effect of the medication,

這是這個藥物的副作用，

and I knew I'd be okay.

我知道，我沒事了。

We're not big on fear in my family,

我的家人們不輕易感到害怕，

but I was scared.

但我很擔心。

I went back to the States,

我回到美國

anticipating I'd return to Europe,

期待我還可能會到歐洲，

but the heart catheterization

但是我的心導管，

showed that I wasn't going anywhere

顯示出我不能到

further that a flight-for-life from Johns Hopkins Hospital.

比醫療直升機到約翰霍浦金斯大學醫院還要遠的地方。

I performed here and there,

我在各個地方表演，

but as my condition deteriorated,

但是，當我的身體狀況開始惡化後，

so did my voice.

我的聲音也開始變糟了。

My doctor wanted me to get on the list for a lung transplant.

我的醫生希望將我排進肺移植手術的名單裡，

I didn't.

我不想要。

I had two friends who had recently died

我有兩個朋友在經歷過非常挑戰性的手術後，

months after having very challenging surgeries.

幾個月後的最近，他們也死去了

I knew another young man, though, who had PH

我還知道另一個年輕人，他得到肺高血壓，

who died while waiting for one.

在等待移植時也離開這個世界了。

I wanted to live.

我還想活下來，

I thought stem cells were a good option,

我認為幹細胞或許是一個不錯的選擇，

but they hadn't developed to a point

不過這項技術還不到成熟的階段，

where I could take advantage of them yet.

所以我也沒辦法從這上面得到幫助。

I officially took a break from singing,

我終於開始休假不唱歌，

and I went to the Cleveland Clinic

為了移植手術

to be reevaluated

出發到克里夫蘭診所，

for the third time in five years, for transplant.

這是五年內的第三次評估。

I was sitting there kind of unenthusiastically talking

我坐著，和負責移植手術的外科醫生談話時

with the head transplant surgeon,

沒有任何的精力，

and I asked him if I needed a transplant,

然後我問他：「要是我需要移植手術

what I could do to prepare.

我需要事前準備什麼呢?」

He said, "Be happy.

他說：「要開心。

A happy patient

當一個快樂的病人，

is a healthy patient."

就是健康的病人。」

It was like in one verbal swoop

這個言語的衝擊

he had channeled my thoughts

他改變了我對於

on life and medicine

生命、藥物

and Confucius.

和孔子的思想 。

I still didn't want a transplant,

我仍然不想要做移植手術

but in a month,

但是在一個月內

I was back in the hospital

因為嚴重的腳踝腫脹

with some severely edemic kankles --

我回到醫院---

very attractive.

看起來很美。

And it was right-heart failure.

這是因為右心臟的衰竭。

I finally decided

我終於決定

it was time to take my doctor's advice.

是時候該聽醫生的建議了，

It was time for me to go to Cleveland

是時候該去克里夫蘭診所

and to start the agonizing wait

開始焦慮的等待

for a match.

可配對的肺。

But the next morning,

但是，隔日早晨

while I was still in the hospital,

當我還在醫院時，

I got a telephone call.

我接到一通電話，

It was my doctor in Cleveland,

是我在克里夫蘭診所的醫生

Marie Budev.

瑪麗．布戴夫，

And they had lungs.

他們有肺

It was a match.

可以配對了，

They were from Texas.

這對肺是從德州來。

And everybody was really happy for me,

大家為我感到非常開心，

but me.

但除了我以外

Because, despite their problems,

因為，除了肺的問題以外，

I had spent my whole life training my lungs,

我花了我全部的人生去訓練我的肺，

and I was not particularly enthusiastic

所以我沒有很想要

about giving them up.

放棄我的肺。

I flew to Cleveland,

我飛到克里夫蘭，

and my family rushed there

我的家人們也都衝到那，，

in hopes that they would meet me

他們希望可以見到我，

and say what we knew

對我說

might be our final goodbye.

可能是最後一次的再見，

But organs don't wait,

不過器官總是等不了，

and I went into surgery

在我可以說聲再見前，

before I could say goodbye.

我就進手術房了，

The last thing I remember

我所記得的最後一件事

was lying on a white blanket,

是我躺在白色的毯子上

telling my surgeon that I needed to see my mother again,

告訴我的醫生我需要再看一次我的母親

and to please try and save my voice.

還有試著挽救我的聲音。

I fell into this apocalyptic dream world.

我陷入了世界末日般的幻境，

During the thirteen-and-a-half-hour surgery,

在這十三個半小時的手術裡，

I flatlined twice,

我死過兩次，

40 quarts of blood

40夸脫的血液

were infused into my body.

注入了我的身體，

And in my surgeon's 20-year career,

在我醫生的20年職涯裡，

he said it was among the most difficult transplants

他說這次的手術是他有史以來

that he's ever performed.

最難的一次了。

They left my chest open for two weeks.

他們把我的胸膛打開兩個禮拜，

You could see my over-sized heart

你們可以看見我過大的心臟

beating inside of it.

在胸腔裡跳動，

I was on a dozen machines

我身旁有一打的機器

that were keeping me alive.

幫助我活下去，

An infection ravaged my skin.

我的皮膚因感染而受到損害，

I had hoped my voice would be saved,

我只希望我的聲音還是完好的，

but my doctors knew

但我的醫生知道，

that the breathing tubes going down my throat

深入我喉嚨裡的呼吸管

might have already destroyed it.

可能已經毀掉我的聲音了，

If they stayed in, there was no way I would ever sing again.

如果管子持續放在我喉嚨裡，我就ㄧ定無法再唱歌。

So my doctor got the ENT,

所以我的醫生找來醫院裡

the top guy at the clinic, to come down

耳鼻喉科的頂尖醫生---

and give me surgery

來幫我做手術，

to move the tubes around my voice box.

幫我把管子移到我喉嚨周圍，

He said it would kill me.

他說這會導致我死亡，

So my own surgeon performed the procedure

所以我的醫生盡最大的力氣，

in a last-ditch attempt to save my voice.

執行這項手術保住我的聲音。

Though my mom couldn't say goodbye to me

雖然我的母親在手術前無法跟我

before the surgery,

說聲再見，

she didn't leave my side

但是在接下來幾個月手術後的恢復期，

in the months of recovery that followed.

她都陪在我身邊。

And if you want an example

如果你想要一個例子

of perseverance,

將毅力、

grit and strength

勇氣和力量

in a beautiful, little package,

集中在一個美麗的小盒子裡，

it is her.

那就是我母親了。

One year ago

ㄧ年前

to this very day,

的這一天，

I woke up.

我醒來了。

I was 95 lbs.

我95磅重，

There were a dozen tubes

我的身體穿進穿出

coming in and out of my body.

數十支管子，

I couldn't walk, I couldn't talk,

我無法走路，我無法說話，

I couldn't eat, I couldn't move,

我無法進食，我無法移動，

I certainly couldn't sing,

我也一定無法歌唱

I couldn't even breathe,

甚至是無法呼吸。

but when I looked up

但是當我抬頭往上看，

and I saw my mother,

我看見我的媽媽，

I couldn't help but smile.

我情不自禁地笑了。

Whether by a Mack truck

無論是因為馬克卡車

or by heart failure

或是心臟衰竭

or faulty lungs,

亦或是有缺陷的肺，

death happens.

死亡還是會發生，

But life isn't really just about avoiding death, is it?

不過生命並不是只有逃避死亡，不是嗎?

It's about living.

生命是關於活出自我，

Medical conditions don't negate the human condition.

疾病的狀況並不能否認人生的狀況，

And when people are allowed

當人們被允許

to pursue their passions,

可以去追求理想時，

doctors will find they have better,

醫生就會發現病患變的更好，

happier and healthier patients.

更開心也更健康。

My parents were totally stressed out

我爸媽對於我

about me going and auditioning

走路、試演、旅行和

and traveling and performing all over the place,

在各個地方表演感到很緊張，

but they knew that it was much better for me to do that

但他們知道這對我來說比起

than be preoccupied with my own mortality all of the time.

我被死亡的想法佔據著還要更好，

And I'm so grateful they did.

我也很感激他們是這樣想的。

This past summer, when I was running and singing

去年夏天，當我在科羅拉多落磯山上，

and dancing and playing with my nieces and my nephews

和我的姪女、姪子、哥哥、姐姐們

and my brothers and my sisters and my mother and my grandmother

還有我媽媽和祖母一起跑步、唱歌

in the Colorado Rockies,

跳舞和玩耍時，

I couldn't help but think of that doctor

我不禁想起那位醫生曾經告訴我

who told me that I couldn't sing.

無法再度唱歌的話，

And I wanted to tell her,

而我希望告訴她，

and I want to tell you,

也希望能告訴你們，

we need to stop letting disease

我們應該要阻止疾病

divorce us from our dreams.

讓我們和我們的夢想分離，

When we do,

當我們這樣想，

we will find that patients

我們會發現病人們

don't just survive;

並不只是為了生存而活下來，

we thrive.

而是活得更好，

And some of us

而有些人，

might even sing.

或許甚至可以唱歌。♫

(Applause)

(掌聲)

[Singing: French]

(♫唱歌：法文♫)

Thank you.

謝謝

(Applause)

(掌聲)

Thank you.

謝謝

And I'd like to thank my pianist, Monica Lee.

我要感謝我的鋼琴手，莫妮卡．李

(Applause)

(掌聲)

Thank you so much.

真的很感謝你們

Thank you.

謝謝