访谈录 2008-09-01&09-03 上帝,请再给我一个月的“有声世界”

Now to the inspiring story of a young woman faced with a difficult diagnosis¹. The surgery she needed to save her life would cause her to lose her hearing forever. So how would you spend your last days being able to hear the world? Jessica Stone did it with bravery and grace.

 taste it, taste it, love’s so sweet. And all of it was lost on me

Imagine a symphony of sounds that make up your life, your favorite song, your family's laughter, your dog. Now imagine counting down the weeks, days, hours until every sound disappears.

Really, at a loss for emotion, freak out, actually. To be very blunt, freak out.

Surgery has been a fact of life for 23-year-old Jessica Stone since she was a little girl. But it wasn't until she was 15 that doctors were able to put a name to her disease neurofibromatosis, a rare genetic² disorder³ that causes benign⁴ tumors to grow along her nervous system.

The diagnosis was, you know, pretty much a kick in the gut⁶.

Over the years Jessica has had more than 20 surgeries to remove the tumors.

Since this whole thing started eight years ago, I wanna crawl up, a lot of days and cry and I can't because, I can't do it because she doesn't do it.

Her humor has always found ways to make her through and she is just a beautiful person inside and out.

She'd already lost the hearing in her left ear and then this went her devastating⁷ news, there is a tumor⁵ pressing against her brainstem that has to come out. And the operation that will heal her will also leave her deaf.

You do a surgery that will leave you completely deaf or you take the risk of just stroking one day and dying. And now that was her choice.

The deafness thing, I will only, I will find some funky⁸, corky way to make it work for me, to, you know be the, the person in the family that just like, wow, you know, she's deaf but she just does it so well!

Today marks thirty days until my big surgery. . .

And so in the month before surgery, Jessica sets out to record the sounds that make up her world.

Dig, doggy, dig a hole...

Playing her bongos, making her morning smoothy. The hope is one day these images will remind her of the sounds she can no longer hear.

Well it's hard to change the way you lose if you think you never won.

She practices her sign language by learning to sign her favorite song "All We Are" by Matt Nathanson. Just three weeks before surgery she gets to meet Nathanson at his concert, the last one she will ever hear.

On one hand it's great to meet the person. On the other hand, you know, I am never gonna to hear him sing again. So you know, it was a definitely emotional thing last night.

With one week left she takes in the gentle roar of the wind and waves of the beach.

Oh, it's gorgeous, listen to those waves. .

And then all too soon the day of surgery is here. It has been a long 30 days and, yeah, very long very hard.

We talked and laughed and all kinds of things the night before, we wanted to get every minute in and you know nobody wanted to go to bed and then all of a sudden it's 6 a. m. and you're in the hospital.

That morning in the hospital, tense emotional moments, one last conversation.

I love you.

A final "I love you" and listening one last time to her favorite song as she is wheeled into the operating room.

In the end, the words won't matter.

After 13 hours of surgery relief, doctors tell Jessica's family the tumor is out and she is doing well.

The next morning the new reality -- Jessica's first conversation without sound

1 diagnosis   

n.诊断，诊断结果，调查分析，判断

参考例句：

• His symptoms gave no obvious pointer to a possible diagnosis.他的症状无法作出明确的诊断。
• The engineer made a complete diagnosis of the bridge's collapse.工程师对桥的倒塌做一次彻底的调查分析。

2 genetic   

adj.遗传的，遗传学的

参考例句：

• It's very difficult to treat genetic diseases.遗传性疾病治疗起来很困难。
• Each daughter cell can receive a full complement of the genetic information.每个子细胞可以收到遗传信息的一个完全补偿物。

3 disorder   

n.紊乱，混乱；骚动，骚乱；疾病，失调

参考例句：

• When returning back,he discovered the room to be in disorder.回家后，他发现屋子里乱七八糟。
• It contained a vast number of letters in great disorder.里面七零八落地装着许多信件。

4 benign   

adj.善良的，慈祥的；良性的，无危险的

参考例句：

• The benign weather brought North America a bumper crop.温和的气候给北美带来大丰收。
• Martha is a benign old lady.玛莎是个仁慈的老妇人。

5 tumor   

n.（肿）瘤，肿块(英)tumour

参考例句：

• He was died of a malignant tumor.他死于恶性肿瘤。
• The surgeons irradiated the tumor.外科医生用X射线照射那个肿瘤。

6 gut   

n.[pl.]胆量；内脏；adj.本能的；vt.取出内脏

参考例句：

• It is not always necessary to gut the fish prior to freezing.冷冻鱼之前并不总是需要先把内脏掏空。
• My immediate gut feeling was to refuse.我本能的直接反应是拒绝。

7 devastating   

adj.毁灭性的，令人震惊的，强有力的

参考例句：

• It is the most devastating storm in 20 years.这是20年来破坏性最大的风暴。
• Affairs do have a devastating effect on marriages.婚外情确实会对婚姻造成毁灭性的影响。

8 funky   

adj.畏缩的，怯懦的，霉臭的；adj.新式的，时髦的

参考例句：

• The kitchen smelled really funky.这个厨房有一股霉味。
• It is a funky restaurant with very interesting art on the walls.那是一家墙上挂着很有意思的绘画的新潮餐馆。