美国国家公共电台 NPR To Help Others, One Couple Talks About Life With Early-Onset Alzheimer's

 

AILSA CHANG, HOST:

Researchers say as many as 200,000 Americans experience early-onset Alzheimer's disease. They develop dementia-like symptoms in their 40s and 50s. And that can mean struggles with jobs and money or with identity and family. Bella Doolittle is confronting all of this. She and her husband, Will, are talking publicly about her illness in a series of essays and podcasts. North Country Public Radio's Brian Mann spent some time with them.

BRIAN MANN, BYLINE¹: Bella Doolittle is in her kitchen filling little brown bottles.

BELLA DOOLITTLE: I just finished making my annual Christmas presents. It's homemade Kahlua. It's the best you will ever drink.

WILL DOOLITTLE: Why don't we give him a little sip²?

B. DOOLITTLE: And I have my vanilla³ beans imported from Madagascar.

MANN: Bella is a young-looking 59 years old. She wears a T-shirt and has a bright red tangle⁴ of hair. She watches my face as I take a sip.

Oh, my God.

B. DOOLITTLE: I make it every year.

MANN: But this year is different. Bella says for a while now she's just felt off. She says her brain gets fuzzy.

B. DOOLITTLE: I got lost a couple of times in neighborhoods that I'm familiar with. It was dark, but I thought to myself, that should not have, you know, put me out there that I couldn't figure out where - how I was going to get back home.

MANN: The Doolittles live in Glens Falls, a little suburban⁵ city in upstate New York. They raised four children - two grown and gone, two still in college. She and her husband, Will, started traveling to Albany about an hour away for test after test. Last February, her neurologist said the words.

B. DOOLITTLE: Well, we figured out what's going on with you, and this is it - Alzheimer's. And I'm like, no, it's not.

W. DOOLITTLE: You asked them - you said, well, how long does this take, or how long do I have or something? And he said, on average, eight years.

B. DOOLITTLE: Yeah.

W. DOOLITTLE: That really upset you.

B. DOOLITTLE: That really pissed me off. It did, absolutely. I mean, I was pretty devastated⁶. I'm like, eight years? I haven't even gotten wrinkly yet.

MANN: Bella says after she heard the diagnosis⁷, she sat in the car and cried. Will Doolittle writes for the local newspaper. After the shock of the diagnosis eased, they decided⁸ that they would tell their story in his column and also in a new podcast.

(SOUNDBITE OF PODCAST, "ALZHEIMER'S CHRONICLES")

W. DOOLITTLE: I'm Will Doolittle, and my wife is Bella. We're facing a lot of practical questions about finances, and wills and whether Bella will keep working or retire. And we're facing personal questions as our relationship is challenged by this. And as we react to the changes it brings, it's a journey.

MANN: That first episode of "Alzheimer's Chronicles" appeared in November. Bella says the decision to talk publicly about her illness wasn't hard.

B. DOOLITTLE: I don't feel like it's something that's, like, Some bad secret. It's not something I brought on myself, and it really isn't - I mean, it isn't something that people should be embarrassed about. But I know a lot of people who have this are afraid for other people to know.

MANN: Other doctors have told Bella that that eight-year timeline - it's not certain at all. There's a lot of variation in the way this disease progresses. But for Bella and Will, things are already moving frighteningly fast. In the first podcast, they're still debating whether she needs to leave her job at a local community college. A month later, the decision's been made, and we hear she's not happy.

(SOUNDBITE OF PODCAST, "ALZHEIMER'S CHRONICLES")

B. DOOLITTLE: It's not my condition's fault that society isn't ready yet to acknowledge that just because you're not perfect, you're not as useful.

MANN: Bella says he's convinced with a little help and support, she could've kept working. But as she talks about it, she gets confused, loses the timeline.

B. DOOLITTLE: So I stayed for a couple of more years, and I recently retired⁹.

W. DOOLITTLE: So you didn't stay for a couple more years. You stayed for, you know, ten more months.

B. DOOLITTLE: That was a couple years ago.

W. DOOLITTLE: No, it wasn't, hon. That was last spring.

B. DOOLITTLE: Was it?

MANN: So Bella, I see Will already helping¹⁰ you with memory. How does that feel?

B. DOOLITTLE: I appreciate it. I mean, there's nothing he can do that will make me angry.

MANN: One irony¹¹ - kind of painful, kind of bittersweet - is that Bella and Will are experiencing a kind of honeymoon¹² during this crisis, a new kind of romance. Part of that is because Bella's personality is already really different. They talk about it on the podcast.

(SOUNDBITE OF PODCAST, "ALZHEIMER'S CHRONICLES")

W. DOOLITTLE: You're a little more goofy, a little more upbeat and jolly.

B. DOOLITTLE: (Laughter) That's a little oxymoron.

W. DOOLITTLE: It is? Why?

B. DOOLITTLE: Because I've been diagnosed with a disease that I have an expiration¹³ date with. So I should be, like, depressed¹⁴ and walking around like the world is about to end because it is.

MANN: Bella agrees. She's kind of a different person now - warmer, less of a perfectionist. Will says he misses the part of Bella that's gone, misses that bossy¹⁵, Type A, sometimes fierce woman.

W. DOOLITTLE: Well, of course, I mean, you know, we fell in love. We've had a long marriage. And we had - you know, I - it's not like I wanted parts of her to fade away. You know, I didn't wish for that. I'm not saying I exactly miss (laughter) our fights, but, you know, that's a part of who we were as a couple. And that's not there now. It just really isn't.

MANN: So the Doolittles are making all kinds of adjustments as they try to figure out where this goes next. Will has taken over managing their finances. A lot of that used to be Bella's job. Early-onset Alzheimer's is a complicated condition. Bella will eventually require special care. In the meantime, now that she's not working, she's arranging to take art classes, thinking about trying to start a home business. On the podcast, she sounds committed to managing this, maintaining some control even as her mind changes.

(SOUNDBITE OF PODCAST, "ALZHEIMER'S CHRONICLES")

B. DOOLITTLE: I feel like I can go with the flow. But if the flow isn't going the way I want it to go, I'm going to change that direction.

W. DOOLITTLE: So that's an optimistic way of looking at it.

B. DOOLITTLE: Yeah, it is optimistic.

MANN: Bella says she hopes to break down some of the stigma¹⁶ of Alzheimer's, showing she can be productive and hold on to the best parts of herself at least for a while.

B. DOOLITTLE: It doesn't stop me from doing life. The one thing that I really dislike about the disease is that I'm afraid that I'm not going to have as much time with my husband as I would like. I want us to be really old together. But if I die early, he'll be on his own, and I feel bad about that.

MANN: Bella and Will plan to continue the podcast as her Alzheimer's advances, talking candidly¹⁷ about this part of their marriage, about their love and about this disease, the things they're gaining and the things slipping away. Brian Mann, NPR News.

(SOUNDBITE OF U137's "LET ME KEEP THIS MEMORY")

CHANG: You'll find a link to the Doolittles' podcast "Alzheimer's Chronicles" at our website, npr.org.

(SOUNDBITE OF U137's "LET ME KEEP THIS MEMORY")

1 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。

2 sip   

v.小口地喝，抿，呷；n.一小口的量

参考例句：

• She took a sip of the cocktail.她啜饮一口鸡尾酒。
• Elizabeth took a sip of the hot coffee.伊丽莎白呷了一口热咖啡。

3 vanilla   

n.香子兰，香草

参考例句：

• He used to love milk flavoured with vanilla.他过去常爱喝带香草味的牛奶。
• I added a dollop of vanilla ice-cream to the pie.我在馅饼里加了一块香草冰激凌。

4 tangle   

n.纠缠；缠结；混乱；v.(使)缠绕；变乱

参考例句：

• I shouldn't tangle with Peter.He is bigger than me.我不应该与彼特吵架。他的块头比我大。
• If I were you, I wouldn't tangle with them.我要是你，我就不跟他们争吵。

5 suburban   

adj.城郊的，在郊区的

参考例句：

• Suburban shopping centers were springing up all over America. 效区的商业中心在美国如雨后春笋般地兴起。
• There's a lot of good things about suburban living.郊区生活是有许多优点。

6 devastated   

v.彻底破坏( devastate的过去式和过去分词)；摧毁；毁灭；在感情上（精神上、财务上等）压垮adj.毁坏的；极为震惊的

参考例句：

• The bomb devastated much of the old part of the city. 这颗炸弹炸毁了旧城的一大片地方。
• His family is absolutely devastated. 他的一家感到极为震惊。

7 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。

8 decided   

adj.决定了的，坚决的；明显的，明确的

参考例句：

• This gave them a decided advantage over their opponents.这使他们比对手具有明显的优势。
• There is a decided difference between British and Chinese way of greeting.英国人和中国人打招呼的方式有很明显的区别。

9 retired   

adj.隐退的，退休的，退役的

参考例句：

• The old man retired to the country for rest.这位老人下乡休息去了。
• Many retired people take up gardening as a hobby.许多退休的人都以从事园艺为嗜好。

10 helping   

n.食物的一份&adj.帮助人的，辅助的

参考例句：

• The poor children regularly pony up for a second helping of my hamburger. 那些可怜的孩子们总是要求我把我的汉堡包再给他们一份。
• By doing this, they may at times be helping to restore competition. 这样一来, 他在某些时候,有助于竞争的加强。

11 irony   

n.反语，冷嘲；具有讽刺意味的事，嘲弄

参考例句：

• She said to him with slight irony.她略带嘲讽地对他说。
• In her voice we could sense a certain tinge of irony.从她的声音里我们可以感到某种讥讽的意味。

12 honeymoon   

n.蜜月（假期）；vi.度蜜月

参考例句：

• While on honeymoon in Bali,she learned to scuba dive.她在巴厘岛度蜜月时学会了带水肺潜水。
• The happy pair are leaving for their honeymoon.这幸福的一对就要去度蜜月了。

13 expiration   

n.终结，期满，呼气，呼出物

参考例句：

• Can I have your credit card number followed by the expiration date?能告诉我你的信用卡号码和它的到期日吗?
• This contract shall be terminated on the expiration date.劳动合同期满，即行终止。

14 depressed   

adj.沮丧的，抑郁的，不景气的，萧条的

参考例句：

• When he was depressed,he felt utterly divorced from reality.他心情沮丧时就感到完全脱离了现实。
• His mother was depressed by the sad news.这个坏消息使他的母亲意志消沉。

15 bossy   

adj.爱发号施令的，作威作福的

参考例句：

• She turned me off with her bossy manner.她态度专橫很讨我嫌。
• She moved out because her mother-in-law is too bossy.她的婆婆爱指使人,所以她搬出去住了。

16 stigma   

n.耻辱，污名；(花的)柱头

参考例句：

• Being an unmarried mother used to carry a social stigma.做未婚母亲在社会上曾是不光彩的事。
• The stigma of losing weighed heavily on the team.失败的耻辱让整个队伍压力沉重。

17 candidly   

adv.坦率地，直率而诚恳地

参考例句：

• He has stopped taking heroin now,but admits candidly that he will always be a drug addict.他眼下已经不再吸食海洛因了,不过他坦言自己永远都是个瘾君子。
• Candidly,David,I think you're being unreasonable.大卫，说实话我认为你不讲道理。