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主题：【原创】该如何面对疾病的一点思考 -- 南方有嘉木
这两日，有很多自省。有朋友说我到底是温室的花朵，并无需要挣扎着生活的体会，所以会对他人的一些言行不够宽容。我拿这话去问阿壳，阿壳大笑说，是，是这样的。他说最糟糕的是，我明明很娇气，但却自以为很坚韧，很能吃苦，还老嚷嚷自己是农村出身了解民间疾苦。其实呢，去干农活都是玩儿。
我说，哪有，我手上都有镰刀割破的伤疤。阿壳道你越强调越是你娇气且不懂干活的证明。哪个真正的农民会把刀子往自己手上割的？然道我以后每餐吃米饭还要想，这每粒米粉都有我老婆的鲜血不成？
和阿壳说完，我认真反省我这30年来的成长经历。确实一路顺风顺水；毕业后在北京，虽然工作辛苦，但公婆及其宠爱，生活优裕，几未坐过公交。
算来算去，也就是08年在美国吃了点苦而已。但是我再如何遇到困境，总有亲友在身后。我，从未试过真正被逼到一个人独立担当尽全力为生活打拼的困境，所以可能从未真正感受过心灵被生活磨蚀而给自己戴上假面的苦楚。
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这文字，大家都知道我当时是为何而发。后因一些事情或因自己的不宽容而删。这两日，因朋友和阿壳的提醒，也看到了自己的不足，又有河友回复或发信来问我可有底稿。我想或我当时写下的文字，对其他人如何面对疾病还是有价值的。所以现在以主题帖发在“人间指南”，我会在这个主题下面继续补入一些资料。希望不管是身体上的病，还是心理上的病，我们每个人都有勇气去直面，然后去抗争，去做一个更好的自己，愿河友们都能身心安适！
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每一个得知自己身患大病的人，可能都会有这样的怨气和苦楚：
“老天，你想怎么摆布我、摧残我、安排我都可以，而我呢？什么都不应该做，就应该接受你的安排么？我错了么？我做错过什么？为什么要接受这样的命运？为什么偏偏就是我得病？我是多余的人么，就该死么？”
----若没有，才不正常。阿壳生病到现在十多年，也常是“谁道病情抛弃久，每感疲倦，怨气还依旧”。那种时候，他完全会籍着些非常微不足道的小事朝我发火，我也是花了蛮久的时间才明白他看似指向我的怒火实则指向的是被迫得病的命运。所以作为病人的家属，有时候真要多担待些。
生病，对任何人或任何家庭来说，都是一个大问题，需要严肃认真的用最大努力来解决它。
首先，我们必须坦承癌症啊、白血病啊、尿毒症啊都是很难治的病，我身边得病的亲友不少，我深知其实不存在病愈一说，真得病了，那就只能接受这个事实，然后做带病生存的心理努力。但是，不要轻易地把这些疾病等同绝症。其实任何成年人在某种程度上都在带病生存，没关系，汽车没油了我们可以推着走，人得病了我们也可以在医学的帮助下接着活。让我们勇敢地接受这个底线，然后牢固地树立带病生存的信念。
其次，让我们看看治病最需要的几大要素。
第一，心态。生病最忌悲情，那会严重削弱和病魔抗争的意愿。向病魔屈服，然后顾影自怜，是一个太美丽的陷阱，尤其对沉迷古典的女孩来说，诱惑太深。我也曾在北京的病房手术后醒来深觉自己是全天下最可怜的女子，但是我会提醒自己，我允许自己沉溺片刻，甚至写下些许美丽的文字，但写完之后，我要对自己大喊一声“Stop”，我要拉开窗帘，让阳光照进去，我要对自己说，不，我不是琼瑶笔下的菟丝花，绝不做无法给自己找到对仗的李义山。
我知道要求一个病人拥有一个豁达的心态非常非常困难，因为病痛和医疗的苦都真真切切。任何一个健康的人对病人说不要过家家了，可能在病人读来都有点站着说话不腰疼。但是改变心态确确实实是去正面迎战病魔的第一步，不管你有多不愿意，你都必须去做。这不仅仅是对你自己生命负责的态度，也不仅仅是你对家人负责，这更是我们作为微薄的人类在面对造化的强大时，所应具有的一种承担。
我昨天在河里读到一位父亲写给新生儿的文章，里头有一段话，写得很好：
对自己更要有阳光的态度，要有担当，要有胆量，要坦然，要淡定，最重要的是，要乐观，嘿嘿，来，跟爸爸一起念：“是个人活着就饱经沧桑。就算你是苦孩子里的头头儿、黄连树的根根儿、苦瓜藤的尖尖儿、药罐子里的渣渣儿，既然长这么大不易，又何苦自己跟自己过不去呢？大江大河都闯过来了，个把头阴沟翻了船咱应该含笑爬起来。放开身子，修修小船儿，继续扬帆远去才对。”
第二，医生。不要轻易把自己的生命交给一个你不能信任的医生。多走几家医院，多寻访几个好大夫，直到找到你能信任，能有信心并真心的愿意和你一起去和病魔斗争的主治大夫。找到这样一位大夫的重要性，再如何强调都不过分！我本科上铺19岁得癌症，经历放化疗现已做母亲，她给我说，她最幸运的是遇到了她的主治大夫。这位大夫将她视若己出，用心周到，随时根据她的身体情况调整治疗方案，也时时给她鼓励打气。千万不要怕麻烦！病人和家属最容易犯的一个错误就是盲目地信赖你遇到的第一个医生，但那不一定是最适合你的，信我，货比三家是值得的。
第三，支持，包括亲友和金钱两个方面。如果家人不在就医之地，需要有朋友做好长期陪护的安排和计划。当年家在异地的同学得病，我们系的女生都排好了陪护的班表，每天去医院值班。
第四，严格的自我管理和毅力。病人最好远离古典诗词。是，我们也有很多意气风发的豪迈篇章，但总体来说在病人的心理和意志不足以驾驭诗词带来的影响时，古典诗词会是一个巨大的美丽泥沼，令人深陷哀怨不可自拔。必要的时候也远离网络，避免被干扰。一切都以治病为首要目标，其他有的没有的，都可以抛下。
在这里推荐一本书，是吴士宏的自传《逆风飞飏》。此书作者亦曾罹患白血病，我前述室友说她生病时读此书受益良多。我也读过，确实不错。
可以在这下载：
本帖一共被 1 帖 引用 (帖内工具实现)
刚给你发了个短信，才发现原来这里还有文章。
送花成功，可取消。有效送花赞扬。感谢：作者获得通宝一枚。
参数变化，作者，声望:1；铢钱:16。你，乐善:1；铢钱:-1。本帖花:1
先把文章贴上来，明天翻出来。
Coping With Crises Close to Someone Else’s Heart
By HARRIET BROWN
Published: August 16, 2010
Over the last few years, my family has weathered our share of crises. First our younger daughter was hospitalized for a week with Kawasaki disease, a rare condition in children that involves inflammation of the blood vessels, and spent several months convalescing at home. Soon after she recovered, our older daughter landed in the hospital with anorexia, which proved to be the start of a yearlong fight for her life.
Somewhere in the middle of that process, my mother-in-law was given a diagnosis of advanced lung cancer, and died less than 11 months later.
So we’ve had plenty of opportunities to observe not only how we dealt with trauma but how our friends, family and community did, too. For the most part, we were blessed with support and love; friends ran errands for us, delivered meals, sat in hospital waiting rooms, walked, talked and cried with us.
But a couple of friends disappeared entirely. During the year we spent in eating-disorder hell, they called once or twice but otherwise behaved as though we had been transported to Mongolia with no telephones or e-mail.
At first, I barely noticed; I was overwhelmed with getting through each day. As the year wore on, though, and life settled in to a new if unpleasant version of normal, I began to wonder what had happened. Given our preoccupation with our daughter’s recovery and my husband’s mother’s illness, we were no doubt lousy company. Maybe we’d somehow offended our friends. Or maybe they were just sick of the disasters that now consumed our lives; just because we were stuck with them didn’t mean our friends had to go there, too.
Even if they were completely fed up with us, though, they had to know that my husband and I were going through the toughest year of our lives. I would have understood their defection if our friendship had been less close; as it was, I couldn’t stop wondering what had happened.
In the wake of 9/11, two wars and the seemingly ever-rising tide of natural disasters, we’ve come to understand the various ways in which people cope with crisis when it happens to them. But psychologists are just beginning to explore the ways we respond to other people’s traumas.
“We all live in some degree of terror of bad things happening to us,” said Barbara M. Sourkes, associate professor of pediatrics at the Stanford University School of Medicine. “When you’re confronted by someone else’s horror, there’s a sense that it’s close to home.”
Dr. Sourkes works with families confronted with the unfolding trauma of a child’s serious, and possibly fatal, illness. “Other people’s reactions are multifaceted,” she said. “There’s no formula, and it’ll change from person to person.” The only certainty is that traumatic events change relationships outside the family as well as within it.
Often the closer one feels to the family in crisis, the harder it is to cope. “Most people cannot tolerate the feeling of helplessness,” said Jackson Rainer, a professor of psychology at Georgia Southern University who has studied grief and relationships. “And in the presence of another’s crisis, there’s always the sense of helplessness.”
Feelings of vulnerability can lead to a kind of survivor’s guilt: People are grateful that the trauma didn’t happen to them, but they feel deeply ashamed of their reactions. Such emotional discomfort often leads them to avoid the family in crisis; as Dr. Sourkes put it, “They might, for instance, make sure they’re never in a situation where they have to talk to the family directly.”
Awkwardness is another common reaction — not knowing what to say or do. Some people say nothing; others, in a rush to relieve the feelings of awkwardness, blurt out well-intentioned but thoughtless comments, like telling the parent of a child with cancer, “My grandmother went through this, so I understand.”
“We have more of a societal framework for what to say and do around bereavement than we do when you’re in the midst of it,” Dr. Sourkes said. “Families say over and over, ‘It’s such a lonely time and I don’t have the energy to educate my friends and family, yet they don’t have a clue.’ ”
The more vulnerable people feel, the harder it may be to connect. A friend whose son suffered brain damage in an accident told me that the families who dropped them afterward had children the same age as her son. They could picture all too vividly the same thing happening to their children; they felt too much empathy rather than not enough.
That was true for us, too, I realized. The friends who had disappeared had daughters exactly the same age as ours.
Dr. Rainer describes this kind of distancing as “stiff-arming” — creating as much space as possible from the possibility of trauma. It’s magical thinking in the service of denial: If bad things are happening to you and I stay away from you, then I’ll be safe.
Such people often wind up offering what Dr. Rainer calls pseudo-care, asking vaguely if there’s anything they can do but never following up. Or they might say they’re praying for the family in crisis, a response he dismisses as ineffectual at best. “A more compassionate response,” he said, “is ‘I am praying for myself to have the courage to help you.’ ”
True empathy inspires what sociologists call instrumental aid. “There are any number of tasks to be done, and they’re as personal as your thumbprint,” Dr. Rainer said. If you really want to help a family in crisis, offer to do something specific: drive the carpool, weed the garden, bring a meal, do the laundry, go for a walk.
I tested that theory recently, when a friend’s mother went through a series of medical crises and moved to an assisted-living facility in our town. Normally, I might have been guilty of pseudo-care, asking if I could do anything but never really stepping up. Instead, I e-mailed her a list of tasks I could do, and asked if any of them would be helpful.
To my surprise, my friend responded by asking if I’d visit her mother on a day she couldn’t. Her mother was glad for the company, and my friend felt reassured, knowing that her mother wasn’t alone.
And I had the chance to do something truly useful for my friend, which in turn let me show her how much I cared about her. The time I spent with her mother turned out to be a gift for me.
Thinking back to my own years of crisis, I wondered why I’d focused on the friends who didn’t come through when so many others had. In retrospect, I wished I’d taken a slightly more Zen-like attitude.
“The human condition is that traumatic events occur,” said David B. Adams, a psychologist in private practice in Atlanta. “The reality is that we are equipped to deal with them. The challenge that lies before us is quite often more important than the disappointment that surrounds us.”
运动和保持好的饮食都能离疾病远一些。
最重要的是，无论什么情况之下，有个好的心态~
人活着就要有一种精神。
生命是脆弱的，生命又是顽强的。
放开心中的包袱，开心积极过好每天，幸福就在你的身边，疾病会远离。
常常让我想起孔老夫子，悲天悯人却不悲观，自尊又尊重他人，很知性，很知性。
两千年前那个和气老头和一个现代摩登美女遥遥招手，灵异啊
怎样战胜坏的心态呢？目标明确，执行都会有问题。
身体背叛理想，还不让精神出轨，真要把自己憋成诗人？
以治病为目标是可以，不过病人自己似乎没什么可作，除了生活规律，准时吃药，没事做所以胡思乱想，还不如给他召点事做。
还是你家壳怎么了？
也许是不让家人担心，
也许是不让别人可怜自己，
也许是觉得每天发愁太痛苦，
也许是及时行乐，
也许是没有绝望，还要再和病魔斗一把，
也许是改变人生观，要用有限的生命做有意义的事情，
也许是明白了生老病死，淡看一切，
也许是发现亲人突然更关心自己了，感觉到了周围朋友的爱，
等等
这些都能让心态都会变好，可是有些却是矛盾的
对于很少经历疾病的人：如果把一个人获得一副什么样的身体比作一次“抽签”，你能抽到上上签固为幸事，但也不妨对那些抽到下下签的人多一点理解和尊重。（这个比喻是我听来的，觉得很贴切就引用一下。）需要说明的是，关键的态度是建立在尊重基础上的理解，而不必一味表达自己的同情和关爱。之所以说明这一点，是因为我看嘉木河友和一些热心河友，至今不明白那位被你们好意关怀的河友为何会如此动气。你可以说她过于敏感和骄傲，但是不是真的不可理解？设身处地想一想。对于自尊心较强的人，滥施同情也是一种侮辱，区别对待更不可取。所以，如果你不能设身处地，那么保持一般性的尊重、就事论事即可。
对于经历过或者正在经历病痛的人：如果你把生命看作一种客观的存在过程，那么疾病也只是这种过程的特殊状态，它本身是没有什么好坏之分的，好坏取决于人对待它的方式。或者，如果你把人生看做一段旅行，那么去到风光绮丽处，和地势险要处，也无非沿途景致的区别，气候不好路不顺，短期看来的确很麻烦，但决定旅行质量的，还是旅行者的心态和底气。
对于大多数身体状况还过得去，但也不妨未雨绸缪的朋友：身体状态未必是决定人心和气质的唯一标准，但说它会很大程度上影响人的心性和行为，或许不会有人持异议。薛宝钗比林黛玉随和大度，史湘云更是活泼灵动，心态然？体质然。任谁一天咳血三次，不伤春悲秋也难。所以呢，不管大家在生活中是更喜欢薛姑娘的通达，还是更欣赏史姑娘的率性，也不必非要去奚落林姑娘的。
当所有的信息都告诉你，你的病无法治好，或者治好的代价是你承受不起的时候，心中的那种绝望难以言表。.......
才国的铃。
无论是黄姑的敕命、摇篮的安慰，还是海船上孩子的话都不能触动铃，反而让铃把幸福的希望完全寄托在了同是海客的景女王身上。
直到最后，想明白的还是她自己，也只有靠她自己才能想明白。
说一千道一万，心态是最重要的。人快快乐乐也是一辈子，悲悲戚戚也是一辈子——唯有这，是完全由自己决定、也是只能有自己决定的东西。
我和阿壳都很好。
若你读出了我文字中的隐晦，是因为我不想伤害他人