by Dr. Stephen Hume Joyce 譯

當(dāng)記憶漸漸消失

What Alzheimer’s Disease Feels Like

by Dr. Stephen Hume Joyce 譯

記憶慢慢衰退，各方面能力漸漸下降，和他人的關(guān)系、對(duì)自己的定位也不得不作出相應(yīng)的改變，這些都是阿爾茨海默病患者所要面對(duì)的困境。下面就讓我們一起走進(jìn)阿爾茨海默病患者的心路歷程。

I t was an uncharacteristically warm and sunny morning in Alaska. I was sitting on the1)aft deck of a cruise ship watching brilliant blue icebergs drift silently by, on vacation with my partner Candy. We had decided to go on a sevenday cruise through Alaska’s Inside Passage because I had always wanted to see the glaciers and time was running out.

Diagnosed six years ago with Alzheimer’s disease at age sixty, it was time for me to do those lifetime adventures. As I watched one small iceberg2)glisten in the sunlight, I was drawn to its facets and how as each one caught the sunlight a small piece would3)topple off. This is what it’s like to have this disease, I thought. My brain is the iceberg and every day I lose some little part of it. There are days when the sun is bright and I may lose a bigger or more obvious piece and there are cloudy, cold days when I don’t lose anything. Such is the life of an iceberg and a brain attacked by Alzheimer’s disease.

這是阿拉斯加異常溫暖、陽(yáng)光明媚的一個(gè)早上。我正坐在一艘游輪船尾的甲板上，看著美麗的藍(lán)色冰山靜靜地漂過(guò)。我和伴侶康蒂正在度假。我們已經(jīng)決定開(kāi)展一段為期7日的阿拉斯加內(nèi)線航道穿越之旅，因?yàn)槲乙恢毕胍幢?，而我已?jīng)時(shí)日無(wú)多了。

六年前我被診斷出患有阿爾茨海默病，那時(shí)我年值花甲，我想也該是去進(jìn)行人生冒險(xiǎn)的時(shí)候了。我看到一座小冰山在陽(yáng)光下閃閃發(fā)光，只要是陽(yáng)光所到之處，其表面就會(huì)掉落出一小片冰塊，我被這個(gè)景象吸引住了。我想，這就是患有阿爾茨海默病的感覺(jué)。我的大腦就是這座冰山，每天我都會(huì)失去其中的一小部分。陽(yáng)光燦爛時(shí)，我也許會(huì)失去更大、更突出的一塊。而烏云密布、天寒地凍時(shí)，我什么都不會(huì)失去。這就是冰山的生命歷程，也是一個(gè)阿爾茨海默病患者大腦神經(jīng)的衰退過(guò)程。

1) aft [ɑ?ft] adj. 船尾的

2) glisten [gl?sn] v. 閃光

3) topple ['t?pl] v. 傾倒

When I was frst diagnosed, it had become apparent to me that I was having cognitive problems. Once a creative,4)holistic thinker, I could no longer hold in my head the many ideas needed for this type of thinking. I had become much more linear in my approach to life.

Now Step 1 had to be followed by Step 2 and then 3. I could write these steps down and follow them at least most of the time. As my symptoms progress and I lose more and more, I have come to appreciate one aspect of this disease—forgetting. Every time I am aware of a change in my abilities it is only apparent for a short time. During that time I become distressed, but I know that in a very short time I won’t remember ever having it. I guess this is a protective process, and it does make life easier for me.

Our vacation was different for me this time. I knew that what I was experiencing was spectacular but I missed its intensity. It’s as if the colors of the sky or a sunset or the blues of the glacier were all grayer. There was still color and beauty, but it was just not the same.

As a psychologist, I learned that we store our memories in many different places in our brains. Often a smell or taste will5)elicit a powerful memory, even though the image has long been forgotten. Every night I’d try to recall what I’d seen that day. It was diffcult. Realizing this, I tried to create mental postcards and absorb the smells, tastes, and sounds of the places we went.

When I refect on what I have lost, I am still aware of two important things. One is my intelligence and creative drive; the other is my connection to others. Both of these have changed dramatically and I miss them greatly. Always a self-motivated (and some would say driven) person, I now need other people to help me fnd ways to be helpful to others. I have gone from being the person others went to for ideas and direction to being directed. This has changed my relationships in major ways.

在剛被確診時(shí)，我就明顯感到我的認(rèn)知能力出了問(wèn)題。以前，我的思維活躍、全面而富有創(chuàng)造力。但如今，我的腦袋已經(jīng)裝不下太多的想法，無(wú)法再進(jìn)行這種思考。我的人生體驗(yàn)變得越來(lái)越單調(diào)。

現(xiàn)在，我做事必須照著步驟來(lái)，步驟1，步驟2，步驟3。至少大多時(shí)候，我都可以寫下這些步驟然后跟著做。隨著我的癥狀日漸加重，我失去的東西也越來(lái)越多，但是我逐漸開(kāi)始感謝這個(gè)病的一個(gè)方面——遺忘。每當(dāng)我意識(shí)到自己能力有所改變時(shí)，這意識(shí)只會(huì)持續(xù)很短一段時(shí)間。在那段時(shí)間里，我會(huì)變得很痛苦。但我知道，很快，我就不會(huì)記得曾為此而痛苦過(guò)。我猜這是身體的保護(hù)機(jī)制，這也確實(shí)讓我的生活變得容易些。

這次度假給我的感覺(jué)有所不同。我知道自己正在體驗(yàn)的事物很壯觀，但我感受不到那種震撼。仿佛蔚藍(lán)的天空、絢麗的夕陽(yáng)，或是湛藍(lán)的冰山，都蒙上了一層灰蒙的陰影。事物依舊色彩斑斕，美麗動(dòng)人，但給我的感覺(jué)就是不一樣。

作為一名心理學(xué)家，我知道記憶儲(chǔ)存在大腦不同的區(qū)域。我們聞到或者嘗到一種味道往往會(huì)勾起一段深刻的記憶，即使你早已忘記當(dāng)時(shí)的情景。每天晚上我都會(huì)試著回憶當(dāng)天所見(jiàn)過(guò)的事物。但這很難做到。意識(shí)到這一點(diǎn)后，我努力在腦海里構(gòu)建意識(shí)明信片，把我們所到之處聞過(guò)、嘗過(guò)的味道，聽(tīng)到過(guò)的聲音記錄其中。

當(dāng)我回顧自己失去了什么時(shí)，我還意識(shí)到自己失去了兩樣重要的東西：一是我的聰明才智和創(chuàng)造力；二是我與他人的關(guān)系。這兩樣?xùn)|西都發(fā)生了巨大的變化，我對(duì)之非常懷念。我一向是個(gè)善于自我激勵(lì)（也有人說(shuō)是善于自我鞭策）的人，而現(xiàn)在我卻需要?jiǎng)e人的幫助才不至于給人添麻煩。我從那個(gè)為別人出謀劃策的人變成了需要?jiǎng)e人出謀劃策的人。這讓我的人際關(guān)系發(fā)生了巨大的改變。

I have had to learn to depend on my family and colleagues, which has taught me the value of joining. Although my bond with other people has diminished, I still want to be useful and productive—I just don’t always know how anymore. This disease has humbled me. It has given me a new understanding of myself and the world of others. I believe that with any chronic progressive illness, we are presented with moments of insight and opportunity. What we do with them defnes us in ways we might never have imagined.

The German philosopher Martin Heidegger wrote, “Anyone can achieve their fullest potential...who we are might be predetermined, but the path we follow is always of our own choosing. We should never allow our fears or the expectations of others to set the frontiers of our destiny. Your destiny can’t be changed but it can be challenged. Every man is born as many men and dies as a single one.”

I intend to be the author of this chapter of my life and actively shape the man I will die as.

4) holistic [h??'l?st?k] adj. 整體的，全盤的

5) elicit [?'l?s?t] v. 引出，引起

我不得不學(xué)會(huì)依靠家人和同事，這讓我認(rèn)識(shí)到了人與人之間關(guān)系的寶貴。雖然我與其他人的聯(lián)系減少了，但我還是想做個(gè)有用的、對(duì)社會(huì)有所貢獻(xiàn)的人——我只是不再總是知道該怎么做而已。這個(gè)病讓我變得謙卑，讓我學(xué)會(huì)以另一種方式看待自己與看待他人。我相信任何一種慢性疾病都會(huì)把智慧與機(jī)會(huì)帶到我們面前。我們對(duì)待它們的方式會(huì)讓我們自身產(chǎn)生始料不及的改變。

德國(guó)哲學(xué)家馬丁·海德格爾說(shuō)過(guò)，“每個(gè)人都能發(fā)揮出自身最大的潛能……我們的出身也許一早就注定，但我們卻可以選擇自己未來(lái)的人生道路。我們永遠(yuǎn)都不應(yīng)該讓自己的恐懼或者別人的期望來(lái)左右我們的命運(yùn)。你不能改變命運(yùn)，但你可以挑戰(zhàn)命運(yùn)。我們生來(lái)與他人別無(wú)二致，死時(shí)卻是獨(dú)一無(wú)二?！?/p>

我要成為自己人生終章的作者，積極塑造自己死亡時(shí)將成就的那個(gè)人。