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今年3月，《財(cái)富》雜志的主編黎克騰和演員、制片人及活動(dòng)家邁克爾·J·福克斯促膝而談，內(nèi)容是福克斯在1991年就已經(jīng)確診的帕金森癥。

福克斯對(duì)黎克騰說：“如果我接受它、承認(rèn)它、注視著它并對(duì)它以誠相待，我會(huì)說：‘它就是這樣’……我可以把它記錄下來。”如果“我對(duì)它視而不見，那它就只是一團(tuán)奇形怪狀的東西，而且滲透到了我生活中的每一個(gè)角落，讓事情變得混亂。”

福克斯的同名基金會(huì)致力于尋找治愈帕金森癥的方法，并在為患者開發(fā)改進(jìn)療法方面提供協(xié)助（該基金會(huì)已經(jīng)為研究帕金森癥投入大約9億美元，和美國政府的同類支出相當(dāng)）。福克斯在對(duì)話中介紹了他怎樣鼓勵(lì)患者主動(dòng)為研究做貢獻(xiàn)。

他說：“我們這些患者都是帕金森癥專家。我們有作為患者的責(zé)任——如果我們想讓別人做我們需要他們做的事，就得讓他們充分了解我們的經(jīng)歷，讓他們知道哪些對(duì)我們管用，我們對(duì)什么有反應(yīng)以及我們可以做出什么樣的貢獻(xiàn)。”

該基金會(huì)的另一位創(chuàng)始人黛比·布魯克斯和福克斯一起接受了采訪。她說還有許多工作要做：“我們?nèi)匀粵]有掌握任何已經(jīng)證明對(duì)這種疾病有作用的東西。”黛比還指出，這項(xiàng)挑戰(zhàn)在很大程度上是要弄清楚帕金森癥到底是什么（這就需要數(shù)據(jù)收集工作來發(fā)揮作用）。

回顧以往，福克斯說有兩件和自身疾病有關(guān)的事讓他感到意外。

第一件事是什么？他微笑著說：“我之前沒有意識(shí)到我們的起步點(diǎn)是Kitty Hawk（飛行汽車制造商），而我們想造的是航天飛機(jī)。”

第二件呢？“我還能站著。”

出于這個(gè)原因，58歲的福克斯最近紋了第一個(gè)紋身，圖案是一只烏龜穿過五個(gè)環(huán)，每個(gè)環(huán)代表他生命中的10年。他把這個(gè)紋身放在前臂上，提醒自己為什么要設(shè)立這個(gè)基金會(huì)。福克斯還說，這個(gè)紋身也是提醒自己“正確對(duì)待這種疾病，并在不受它影響的領(lǐng)域大展拳腳”。

福克斯說，帕金森癥“并沒有覆蓋我生活的所有環(huán)節(jié)。當(dāng)然，我做動(dòng)作的方式，我走路的方式……我失去了一些自主能力。有損失。但也有同等數(shù)量的收獲，那就是我對(duì)別人的理解、體驗(yàn)或者和別人的接觸，不得這種病的話是不會(huì)有的。看到所取得的進(jìn)展讓我覺得無比幸運(yùn)。”（財(cái)富中文網(wǎng)）

譯者：Charlie

審校：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.”