美国国家公共电台 NPR Could Brain Surgery Save A Father And Son?

Could Brain Surgery Save A Father And Son?

RAY SUAREZ, HOST:

How much would a parent risk to help a sick child? It's something none of us can know until something happens. NPR's Michael May has the story of a father who had a decision to make when he realized he'd passed on a disorder¹ to his son.

MICHAEL MAY, BYLINE²: Carl Luepker was 10 years old when he first noticed his right hand twitching⁴ slightly when he played piano. It was like it had a mind of its own. Doctors diagnosed him at 12 with a degenerative nerve disorder called dystonia. It causes nerves in the brain to misfire, leading to uncontrolled muscle spasms⁷. They get worse over time.

When I met Carl in college in 1991, his hand spasms had gotten bad enough that he couldn't play piano at all. But he kept it pretty well-hidden. He's the kind of guy who let a mock rock band called Cheshire Cat. I remember his wide grin, wild red hair. He always had people laughing. Here he is speaking at his wedding at age 30.

(SOUNDBITE OF ARCHIVED RECORDING)

CARL LUEPKER: Providing comfort with comfort support.

(LAUGHTER)

MAY: The dystonia kept spreading. And eventually, it started to affect his speech.

C. LUEPKER: Yeah, I started to sound more and more like Chewbacca.

MAY: Carl can joke about it, but it's been very painful. He's not the extrovert⁸ and life of the party that he once was. He tries to speak, and his mouth and jaws⁹ clench¹⁰ and spasm⁶. Still, Carl has powered through life. He became a sixth-grade schoolteacher. He found ways to adapt, like using an interactive¹¹ whiteboard to communicate with his students.

C. LUEPKER: I never wanted to be considered disabled.

MAY: He never wanted to be considered disabled.

After he was married, Carl was getting a physical. And he contemplated¹² getting a blood test to find out the cause of his dystonia. He and his wife Heather wanted kids. If Carl's dystonia was genetic¹³, he could pass it on to their daughter or son.

C. LUEPKER: Heather turned to me and said - whatever he has, we're going to love him just the same.

MAY: Carl had never let dystonia run his life, and he wasn't about to start. So they never got that gene⁵ test. They had two children, Liam and Lucia. They both sport a shock of red hair, just like their dad. Carl watched his kids grow. His daughter runs cross-country. His son loves to draw. Carl didn't worry that much about dystonia until his kids reached around 10 years old. That's when Carl developed dystonia.

C. LUEPKER: I've always looked for it in my kids. I worked for signs. It was my worst fear.

MAY: He never noticed anything with Lucia. But when Liam was 10 years old, Carl noticed his hand cramping¹⁴ during violin lessons. Then he tripped going up the stairs. Carl was sure he saw his foot twitch³ under him. It was a small thing. Most parents wouldn't have noticed. But Carl, he immediately took Liam to a neurologist.

C. LUEPKER: I had to intervene during his examination and just say - doctor, let's have him walk on his toes. And he couldn't.

LIAM LUEPKER: I kind of knew what was going to happen, but it still shocked me.

MAY: Liam remembers the day he was told he had dystonia.

LIAM: I was just overcome with - not fear but anxiety. I had so many questions. Like, what would happen to my kids? What are the chances of it becoming worse? All these thoughts into my mind poured the instant the doctor said what he said.

MAY: At this point, it's just affecting Liam's left foot and his hand. But it's an insidious¹⁵ disorder. Since Liam's dystonia started in his foot, it's very possible he could end up unable to walk.

C. LUEPKER: It hit me hard. And did I feel shame that he inherited this? Of course.

MAY: Up to this point, Carl had been trying to live a normal life and just ignore the dystonia as much as possible. But now Liam's dystonia has become the center of his life. He quit his job, went on disability. He focuses on Liam full time.

Parents can have a tough time relating to their kids' struggles. But in this case, Carl truly understands what Liam is going through. For example, Liam's been singled out at school for having a weird¹⁶ walk. Carl knows it bugs¹⁷ him, so they talk it out.

LIAM: I want them to know that I want them to still treat me like they treated me before.

C. LUEPKER: You feel like people treat you differently?

LIAM: Only if they know what it is. If they know what it is, they feel more empathetic, which, surprisingly, does not make me happier because I wanted to be treated like a normal kid.

(SOUNDBITE OF PINGPONG BALL BOUNCING)

MAY: But it's not all hard conversations. They play a lot of pingpong - a lot. And they're both good players, completely fluid. Liam's winning this round.

C. LUEPKER: No.

MAY: Carl has discovered that dystonia doesn't affect his reflexes, just one of the things he's able to pass on to Liam.

LIAM: I've watched my dad, and one thing that he taught me is to adjust to new conditions. It's like finding new ways to get around obstacles.

MAY: Carl's doing all this for Liam, but he's also doing it for himself. He's working to find a productive way to channel the guilt¹⁸ he feels. He doesn't want Liam to absorb his sadness. But it doesn't always work. During one of their recent conversations, Liam picked up on it.

C. LUEPKER: You sensed I was sad or I was heavy. And you just said - out of the blue - it's not your fault. And it helped me believe that in that moment that that was true.

MAY: And of course, Liam doesn't blame his dad for his dystonia.

LIAM: I realized it wasn't your fault because it passed down much further than you.

MAY: It's bittersweet to be sure. But this tragic¹⁹ situation has had a powerful impact on their relationship.

LIAM: More connection - we're connected through bonds of pain, I guess. We understand each other more than anyone else does.

MAY: Carl's done a remarkable²⁰ job preparing Liam for life with dystonia. But there's only so much he can do. Liam's pain is getting worse. It's darkened his mood.

So now Carl has begun to consider a risky²¹ intervention²², a treatment that can stop - even reverse - the symptoms of dystonia. It's called deep brain stimulation²³. Doctors implant²⁴ electrodes deep into the brain to calm the neurons that are misfiring. The electrodes stay there forever, like a pacemaker for the brain.

Carl plans to do the surgery first. He can't ask Liam to do something this scary without experiencing it himself.

C. LUEPKER: I have no choice. I have to get this surgery done.

MAY: Carl wants to give Liam courage. He believes this surgery is the best hope that Liam could live a normal life.

Michael May, NPR News.

1 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。

2 byline   

n.署名；v.署名

参考例句：

• His byline was absent as well.他的署名也不见了。
• We wish to thank the author of this article which carries no byline.我们要感谢这篇文章的那位没有署名的作者。

3 twitch   

v.急拉，抽动，痉挛，抽搐；n.扯，阵痛，痉挛

参考例句：

• The smell made my dog's nose twitch.那股气味使我的狗的鼻子抽动着。
• I felt a twitch at my sleeve.我觉得有人扯了一下我的袖子。

4 twitching   

n.颤搐

参考例句：

• The child in a spasm kept twitching his arms and legs. 那个害痉挛的孩子四肢不断地抽搐。 来自《现代汉英综合大词典》
• My eyelids keep twitching all the time. 我眼皮老是跳。 来自《现代汉英综合大词典》

5 gene   

n.遗传因子，基因

参考例句：

• A single gene may have many effects.单一基因可能具有很多种效应。
• The targeting of gene therapy has been paid close attention.其中基因治疗的靶向性是值得密切关注的问题之一。

6 spasm   

n.痉挛，抽搐；一阵发作

参考例句：

• When the spasm passed,it left him weak and sweating.一阵痉挛之后，他虚弱无力，一直冒汗。
• He kicked the chair in a spasm of impatience.他突然变得不耐烦，一脚踢向椅子。

7 spasms   

n.痉挛( spasm的名词复数 )；抽搐；（能量、行为等的）突发；发作

参考例句：

• After the patient received acupuncture treatment,his spasms eased off somewhat. 病人接受针刺治疗后，痉挛稍微减轻了。 来自《简明英汉词典》
• The smile died, squeezed out by spasms of anticipation and anxiety. 一阵阵预测和焦虑把她脸上的微笑挤掉了。 来自辞典例句

8 extrovert   

n.性格外向的人

参考例句：

• A good salesman is usually an extrovert,who likes to mingle with people.一个好的推销员通常很外向，喜欢和人们交往。
• Do you think you're an extrovert or introvert?你认为你是个性外向的人还是个性内向的人？

9 jaws   

n.口部；嘴

参考例句：

• The antelope could not escape the crocodile's gaping jaws. 那只羚羊无法从鱷鱼张开的大口中逃脱。
• The scored jaws of a vise help it bite the work. 台钳上有刻痕的虎钳牙帮助它紧咬住工件。

10 clench   

vt.捏紧（拳头等），咬紧（牙齿等），紧紧握住

参考例句：

• I clenched the arms of my chair.我死死抓住椅子扶手。
• Slowly,he released his breath through clenched teeth.他从紧咬的牙缝间慢慢地舒了口气。

11 interactive   

adj.相互作用的，互相影响的，（电脑）交互的

参考例句：

• The psychotherapy is carried out in small interactive groups.这种心理治疗是在互动的小组之间进行的。
• This will make videogames more interactive than ever.这将使电子游戏的互动性更胜以往。

12 contemplated   

adj. 预期的 动词contemplate的过去分词形式

参考例句：

• The doctor contemplated the difficult operation he had to perform. 医生仔细地考虑他所要做的棘手的手术。
• The government has contemplated reforming the entire tax system. 政府打算改革整个税收体制。

13 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。

14 cramping   

图像压缩

参考例句：

• The bleeding may keep my left hand from cramping. 淌血会叫我的左手不抽筋。
• This loss of sodium can cause dehydration and cramping. 钠流失会造成脱水和抽筋。

15 insidious   

adj.阴险的，隐匿的，暗中为害的，（疾病）不知不觉之间加剧

参考例句：

• That insidious man bad-mouthed me to almost everyone else.那个阴险的家伙几乎见人便说我的坏话。
• Organized crime has an insidious influence on all who come into contact with it.所有和集团犯罪有关的人都会不知不觉地受坏影响。

16 weird   

adj.古怪的，离奇的；怪诞的，神秘而可怕的

参考例句：

• From his weird behaviour,he seems a bit of an oddity.从他不寻常的行为看来，他好像有点怪。
• His weird clothes really gas me.他的怪衣裳简直笑死人。

17 bugs   

adj.疯狂的，发疯的n.窃听器( bug的名词复数 )；病菌；虫子；[计算机]（制作软件程序所产生的意料不到的）错误

参考例句：

• All programs have bugs and need endless refinement. 所有的程序都有漏洞，都需要不断改进。 来自《简明英汉词典》
• The sacks of rice were swarming with bugs. 一袋袋的米里长满了虫子。 来自《简明英汉词典》

18 guilt   

n.犯罪；内疚；过失，罪责

参考例句：

• She tried to cover up her guilt by lying.她企图用谎言掩饰自己的罪行。
• Don't lay a guilt trip on your child about schoolwork.别因为功课责备孩子而使他觉得很内疚。

19 tragic   

adj.悲剧的，悲剧性的，悲惨的

参考例句：

• The effect of the pollution on the beaches is absolutely tragic.污染海滩后果可悲。
• Charles was a man doomed to tragic issues.查理是个注定不得善终的人。

20 remarkable   

adj.显著的，异常的，非凡的，值得注意的

参考例句：

• She has made remarkable headway in her writing skills.她在写作技巧方面有了长足进步。
• These cars are remarkable for the quietness of their engines.这些汽车因发动机没有噪音而不同凡响。

21 risky   

adj.有风险的，冒险的

参考例句：

• It may be risky but we will chance it anyhow.这可能有危险，但我们无论如何要冒一冒险。
• He is well aware how risky this investment is.他心里对这项投资的风险十分清楚。

22 intervention   

n.介入，干涉，干预

参考例句：

• The government's intervention in this dispute will not help.政府对这场争论的干预不会起作用。
• Many people felt he would be hostile to the idea of foreign intervention.许多人觉得他会反对外来干预。

23 stimulation   

n.刺激，激励，鼓舞

参考例句：

• The playgroup provides plenty of stimulation for the children.幼儿游戏组给孩子很多启发。
• You don't get any intellectual stimulation in this job.你不能从这份工作中获得任何智力启发。

24 implant   

vt.注入，植入，灌输

参考例句：

• A good teacher should implant high ideals in children.好教师应该把高尚理想灌输给孩子们。
• The operation to implant the artificial heart took two hours.人工心脏植入手术花费了两小时。