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影星福克斯谈帕金森症

柳仕鲁(Andrew Nusca) 2019年04月23日

回顾以往,福克斯说有两件和自身疾病有关的事让他感到意外。

今年3月,《财富》杂志的主编黎克腾和演员、制片人及活动家迈克尔·J·福克斯促膝而?#31119;?#20869;容是福克斯在1991年就已经确诊的帕金森症。

福克斯对黎克腾说:“如果我?#37038;?#23427;、承认它、注视着它并对它以诚相待,我会说:‘它就是这样’……我可以把它记录下来。”如果“我对它视而不见,那它就只是一团奇形怪状的东西,而且渗透到了我生活中的每一个角落,让事情变得混乱。”

福克斯的同名基金会致力于寻找治愈帕金森症的方法,并在为患者开发改进疗法方面提供协助(该基金会已经为研究帕金森症投入大约9亿美元,和美国政府的同类支出相当)。福克斯在对话中介绍了他怎样鼓励患者主动为研究做贡献。

他说:“我们这些患者都是帕金森症专家。我们有作为患者的责任——如果我们想让别人做我们需要他们做的事,就得让他们充分了解我们的经历,让他们知道哪些对我们管用,我们对什么有反应以及我?#24378;?#20197;做出什么样的贡献。”

该基金会的另一位创始人黛比·布鲁克斯和福克斯一起?#37038;?#20102;采访。她说还?#34892;?#22810;工作要做:“我们仍然没有掌握任何已经证明对这种疾病有作用的东西。”黛比?#24618;?#20986;,这项挑战在很大程度上是要弄清楚帕金森症到底是什么(这就需要数据收集工作来发挥作用)。

回顾以往,福克斯说有两件和自身疾病有关的事让他感到意外。

第一件事是什么?#20811;?#24494;笑着说:“我之前没有意识到我们的起步点是Kitty Hawk(飞行汽车制造商),而我们想造的是航天飞机。”

第二件呢?“我?#40723;?#31449;着。”

出于这个原因,58岁的福克斯最近纹?#35828;?#19968;个纹身,?#21450;?#26159;一只乌龟穿过五个环,每个?#21453;?#34920;他生命中的10年。他把这个纹身放在前臂上,提醒自己为什么要设立这个基金会。福克斯?#39038;擔?#36825;个纹身也是提醒自己“正确对待这种疾病,并在不受它影响的领域大展拳脚”。

福克斯说,帕金森症?#23433;?#27809;有覆盖我生活的所有?#26041;凇?#24403;然,我做动作的方式,我走路的方式……我失去了一些自主能力。有损失。但也有同等数量的收获,那就是我?#21592;?#20154;的理解、体验或者和别人的接触,不得这种病的话是不会有的。看到所取得的进展让我觉得无比?#20197;恕!保?#36130;富中文网)

译者:Charlie

审校:夏林

In March, Fortune editor-in-chief Clifton Leaf sat down with actor, producer, and activist Michael J. Fox to discuss the disease that has been present in his life since it was first diagnosed in 1991: Parkinson’s.

“If I accept it, and I recognize it, and I look at it, and I’m honest with it, and I say, ‘This is what it is’…I can keep track of it,” Fox told Leaf. If “I don’t recognize it and I don’t accept it, it’s just this amorphous blob of goo that seeps into every cranny of my life and confuse things.”

Fox’s namesake foundation is dedicated to finding a cure for Parkinson’s disease and assisting the development of improved therapies for those living with it. (The foundation has deployed some $900 million to research the disease, rivaling the U.S. government’s spending.) In conversation, Fox explained how he’s encouraging patients to come forward and contribute to research.

“Parkinson’s patients, we’re the experts on what we have,” he said. “We have a responsibility as patients—if we expect these people to do what we need them do, they need to be fully informed on our experience, what works with us, what we respond to, what can contribute.”

Debi Brooks, who cofounded Fox’s foundation and sat with the actor during the interview, said there’s much work to be done. “We still don’t have anything that has been proven to interfere with the underlying disease itself,” she said, adding that a big part of the challenge is deciding what Parkinson’s disease actually is. (That’s where the data collection comes into play.)

Looking back, Fox said he has been surprised about two things as it relates to his disease.

The first? “I didn’t realize we were starting with Kitty Hawk and we wanted to build a space shuttle,” he said with a smile.

The second? “I’m still standing.”

That’s why Fox, 58, recently got his first tattoo, a turtle swimming through five hoops—one for each decade of his life. It’s on his forearm and reminds him of why he started the foundation. It also reminds him to keep his disease “in proportion and find ways to flourish in areas that it doesn’t affect,” he added.

Parkinson’s “doesn’t reach every part of my life,” Fox said. “Certainly the way I move, the way I walk…I’ve lost a certain amount of spontaneity. There are losses. But there are equivalent gains, whether it’s an insight or experience or exposure to people that I wouldn’t otherwise meet. I’ve been incredibly privileged to see progress being made.”

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