安然勇敢面對死亡的十五歲小女孩-陈玺安!

第一封信是写给她班主任的。班主任很年轻,26岁,失恋了,求助玺安,才有了这封信。

 哈,亲爱的傅老师,这应该是会是一封很长的信。。记录下这特别的一年!

先来说说我在还没查出癌症前的症状把。

其实从去广州办美国移民签证的那段日子,我已经觉得自己有些不太正常了,走路走不了直线,而是歪歪扭扭的s形,头痛腰痛,有时很认真地看某样东西会突然犯晕,眼前冒蓝星,跳拉丁舞使不出劲儿。妈妈带我去医院看过,貌似还拍过一张脑CT,可啥也没查出来。我自己也不把这当一回事情。

来到美国后,我的腰更加的疼了,从刚开始跑步不能跑,到后来走走路就要摔跤,家人一直都觉得是我坐姿不对,要我多在床上躺躺,保暖,可是都不管用。那时从腰部以下部分的知觉也慢慢没了,这才有了我的大日子,六月三号。

那天早晨,妈妈在摸我的腰时,我啥都感觉不到。妈妈马上带我去婶婶所在医院的急诊,拍了MRI核磁共振。医生说的确在片子里看到了些东西,但不知道是什么,于是一辆救护车把我送进了我现在所接受治疗的地方,westchester medical center,我住在一个非常好的医院,并且离家不远。在救护车上,我和妈妈两人还特兴奋:哇,第一次来美国医院就上这种车啊,太拉轰了吧!我直接进到了医院的重症监护室,隔壁房间的小孩子都是一副奄奄一息的样子,就我特清醒,像是来打打酱油的。从那天开始,我的手上就一直插了很多针管,直到医生为我做了一个手术,埋了一根管子到我的胸腔,这样输液和抽血就方便多了,不用用针扎我,我也不痛。哈,第一次做手术,我倒是不紧张,反正我睡我的大觉。后来医生又为我做了一个活检手术,将我癌细胞提出来一点拿去进行化验,确认到底是哪种瘤。因为我的这个癌细胞很难分辨,它们还把样品寄到了田纳西州(号称世界一流)的研究所作检验,最后结果出来,我的癌症叫做GBM,属于脑癌,不过我肿瘤出现的位置和形式,到现在医生还没找到过这种案例。医生说一般GBM都是一大团白色的东西集中在脑子里,而我的是粉末状,并且原发部位在腰部,他们从没碰见过。也真是幸运,脑中这些粉末状的东西基本没啥重量,所以没有很直接的压迫其他神经。

我入院那天,正好碰到了这里最有经验的女医生,Dr.Tugal值班。她是个和蔼可亲的老太太,我的第一个主治医生。(医生们是以团队合作的,还有神经科医生,放疗科医生等,Tugal在里面像是这团队的总指挥。)让我特欣慰的是这里医院的环境还有医生和护士。我所在的儿童医院,装修的有点象个小城堡,里面还有好多展览的地方,象小博物馆。房间都是单人间,配大厕所,打扫的也很干净,有电视,床还是气垫床,想坐起来和平躺都好调节。如果要叫护士的话按一下铃就可以了。房间外可以看到停直升机的场地。大片绿化。这里的医生都特别好,特别热情,让我觉得很温暖。在医院总能看见他们拖着个大箱子冲来冲去的身影。帮我做活检手术的医生,有时晚上11点了,他帮病人开好刀,手术服还没来得及换掉,就急匆匆跑上楼来先看我一眼。这里的护士也很负责,很nice,有时她们看我一个人很伤心无聊,会来劝我安慰我,与我开开玩笑。我来到美国,总希望给人留下好印象,见到所有人一般都是一张微笑的脸,很礼貌的对他们,所以他们也对我特别好。慢慢地,微笑成了我不自觉的习惯,我的标志,几乎每个来我房间的人都说记住了我的smiley face。

医院里还会有慈善组织来,我住院的时候,有一个组织叫Mikey’s way foundation来过,这位名叫Mikey的哥哥已经不在人世了,他考上哈佛,可是生了很罕见的胃癌。他在住院期间倍感孤独,于是觉得应该让病房里的小孩与外界开始沟通,了解了解病房外的世界,所以他希望送电子产品给病房里的小朋友。他的心愿由他的家人们帮他继续完成。推来的车上有ipad,iphone,itouch,小手提电脑,三星galaxy手机,平板电脑,可以从中选一个。我有点闷,看着这些机器,给大大的震惊了一下,那是我来美国后第一次真正的被触动到。他们了解到我以后想做服装设计师,就开始为我提各种各样的建议,向我推荐好的设计学校,一个个认真的写给妈妈。那天我感受到一颗善心的温暖,而我的善心也从那天开始,生根发芽。

医院里活动倒挺多,有看魔术,做蛋糕,画画,玩游戏等等,可惜对我来说都太小儿科啦。。于是在病房里的我开始拿起纸疯狂的画画,没事就翻翻手机的画报,看看有啥可以借鉴的图片,或是淘宝,看电视。在医院里,碰见了社工Rose,我们在美的第一个朋友。她曾经也是癌症患者,Dr.Tugal治愈了她。Rose是一个可爱的老人,爱把手机插在胸口背心里,肥肥矮矮的,一头金发加上她的樱桃小嘴,看上去特有童趣。她一直都在各种方面竭尽全力的帮助我们家,想让我开心。有时她出游看见有趣的小商店还会给我带礼物:)妈妈和她说我们以后会是一辈子的朋友,一定邀请她来中国玩一次。还有让我留下深刻印象的是护士Jeanie,她也对我特别好,经常跟我们开玩笑,一直想介绍自己女儿给我认识,让我们成为好朋友。我在这里感受到的,都是他们对我们的爱与对工作的热情。就连在医院门口做免费泊车的人,也会主动地帮妈妈搬下重重的轮椅。

当时他们为我打激素,所以我的胃口特别特别好,一会儿一个羊角面包,一会儿一个蝴蝶酥的,这脸肥的急死人。完全就是俩屁股夹着一鼻子。有时在病床上,看着自己的大肚子,轻轻摸摸,安慰自己,想象自己怀孕了。。住院期间还遇到一个好棘手的问题,那就是便秘。。有那么个连续的六天,啊偶,nothing comes out.当然医生又用大力神药,让本姑娘在一天里面与便便幽会六次。

出院后,我每天早上都要按时去医院做放疗。为了让我在放疗的过程中一动不动,医生们特制了一个我的模具,让我在过程中好舒舒服服睡在里面。每次化疗总能看见一个无比结识的黑女人和一个身材矮小的男子吵架,男的骂女的丑,女的骂男的歌太难听。。等到整个疗程结束,我还拿到一张签有所有放疗科工作人员名字的奖状,恭喜我完成治疗~

第一轮治疗的化疗药很厉害,我每次做的时候,(两周化疗一次)总是又吐又泻,肚子一阵一阵特别特别痛,那是一种令人窒息的感觉,感觉你身体里的五脏六肺要爆开了,这是我唯一出现过自杀念头的时候。。真想一刀刺死自己,怎么可以那么难受的。。随着治疗次数的增多,副作用也开始增大了。首先是头发,刚开始只是零零散散的掉几根,后来是稍微一碰就掉下一大把。我索性让老妈做乡村理发师,在院子里把我剃成了小光头。剪的时候我并没有伤心难过,我知道这是我必须要去经历的,所以不怕。妈剃完还担心我一下子接受不了,她不知道实际上我已经在手机屏幕里看见新的自己了~对于一个资深的爱美小姐,激素让我变胖我坦然接受了,可是让我光着头见人。。这不科学!刚开始我还带假发,叔叔他们来的时候,我会不顾命一瘸一拐冲进厨房(当时已经基本走不了路了),老妈过来大叫:“你不要命啦!?”叫完以后她那双愤怒的眼睛又一下子平静下来,她知道我心里的感觉。慢慢地,假发就被我淘汰掉了,太麻烦,大夏天头上箍这么个东西,真是脑子坏掉了。。于是我与心中在意了不知道多少年的漂亮形象分道扬镳!不管以什么样的形象出现,我就是我,美丽的我,不一样的烟火。

接着问题变成了吃东西。我原来的超大胃口都是因为打激素造成的,如今激素不打了,我的胃开始罢工。看见菜只觉得胃难受,味道吃到嘴巴里也总是不对,怪怪的。有时稍微嚼久了,好不容易吃下去的东西就会全部反上来。那段时间,我的体重如同中国那不给力的股市瞬间下滑。由于不能正常进食,我一点精力也没有,成天迷迷糊糊躺在沙发上睡觉休息。化疗其实就是像用一个重磅炸弹去杀蚊子,我的身体又不能接收应有的营养。。现在想来这应该是我生病期间身体状况最差和最不开心的日子。天天跟逃债似的不想吃饭。又累又昏。实在撑不下去了,发烧了,再次住院时,医生为我插了鼻管,这样就可以从管子输送营养液到我的胃里,至少能保证基本的营养。这是最好的办法,唯一的办法。我每次面对新事物都不怕,怀着一颗探索的心,所以第一次插鼻管我很乖的,不哭不闹,护士一下子就把管子成功插进胃里了。可这管子是得按时换的,而且我老是一而再再而三地把它吐出来。。于是医院总是上演插鼻管惊魂。。有时这管子插不进胃,从嘴巴出来;有时在喉咙里绕了个结(抽出来的时候都把我鼻孔弄大了!)基本上每次插都要出鼻血。。插鼻管又变成我最最害怕的事情,一听到就哆嗦,哭哭啼啼的。不过多弄几次,也就有经验了,窍门就是人坐直,头往下低,管子碰到喉咙内壁时开始做咽口水的动作。哈,这方法屡试不爽。基本都一次性成功。我天天都会出鼻血,因为化疗药同样杀死了我的白细胞,我没有抵抗能力,那段时间不可以去人多的地方,干啥都要小心翼翼,就怕细菌进入身体。有几个月,由于我的白血球指标太低,医生为了让化疗正常进行,为我配了升白针。刚开始我以为也是从我身上的管子里打进去,一点不痛的,谁知护士Jeanie亮出一包东西,里面都是一根根针啊,每两周中有个星期要天天打。好冤啊!我最讨厌这种扎针的痛了。。于是我的妈妈又变成了家庭小护士,她把液体推得好慢好慢,就怕我痛。

去年生日,无比奇葩,却终生难忘。飓风Sandi就是那天晚上来袭的,不知是不是闻讯来帮我过生日。。晚上一下子断电了,我在黑灯瞎火中吹蜡烛。令我激动的是我还收到同学们从中国发来的12点生日祝福,真是幸福感爆棚,感谢傅爹哈,我是真的老感动的,虽然看不见你们,不过心里却感受得到你们给我送来的美好。生病以后所有人都在关心着我,竭尽全力的让我开心。很多同学的家长在微博和微信上关注我的情况,为我打气,像Sophia妈妈,基本上我的每条微博她都要评论一下~Cindy和Angela还来看我,见到他们我瞬间变话痨,把几个星期才讲的话全部搬出来说掉。爸爸电视台的朋友还请我去纽约城里看中国达人秀和声动亚洲的巡演,那是我生病以后第一次的小旅行~住宾馆的两晚睡得可真香啊~而且从那次开始,我发现渐渐开始能吃点东西了。

圣诞节到了,Rose告诉我们有个机构叫Make A Wish,它们帮助生重病的小孩完成心愿。愿望可以是旅游,装修自己的房间,去见明星。。甚至还可以见总统。。。我想要一只小狗来陪我,哈,就是那只“Boss”,后来由于妈妈实在忙不过来还是送掉了。来的两名志愿者都特别开朗,她们非常认真的记录下我的每个小要求,并时不时发短信来关心我。把Boss送来的那天,她们还多给了2000多元的支票,说不希望我们因为觉得有了一只小狗而经济有压力。天哪,一切都是这么为我们着想。那么暖心。

这第一轮的化疗也进行了大半年了,肿瘤控制是控制的挺好,问题是,收缩捏?收缩捏?咱该给它个落幕了。

我的第二个主治医生Dr.Jubinski隆重登场!噔噔噔噔!这医生看上去简直是混混的气质,头发乱糟糟,胡渣不剃干净,说话随随便便,初次见面时感觉怪怪的。在我第一轮化疗不知何去何从的时候,正巧他带着自己的大胖助理Mocher来到了我们的医院,像是上天已为我们铺好了路一样。见过几次面以后才知道,他是耶鲁大学的教授,而且跟踪我这种GBM的病已经跟踪了五年了。我现在用的化疗药就是他自己研究自己配的,比第一轮治疗的副作用小得多,唯一需要担心的是血小板降低的问题。这轮的化疗其实概念靠近中医,保守疗法,在尽量不伤害其他细胞的基础上做化疗,也许治疗的时间会挺长的,但是我可以带瘤生存,象正常人一样生活。大家听到这个方案都觉得很满意,靠谱。有一个病人和我患同样的GBM,他的肿瘤已经重重的压迫到了神经,Mocher说第一次见到他时都觉得这孩子一定活不下来。这孩子的家庭一路跟着Dr.Jubinski,从耶鲁到这里,医生自己研制的药,8个月的治疗,他已经好了不知道多少了。我们听到这个都特别激动,说明治愈我有很大的希望。

治疗方案敲定,保险公司不买账啊。在美国都是买医疗保险的,上班族每个月交点钱,生什么病保险公司付钱。我们家申请的是低收入保险,不用交钱。医生的这些药巨贵(如果保险公司要付的话,他们每个月起码付两万美金以上)。加上这药是医生自己研究出来的,还没有足够的案例来表示治疗会成功,保险公司拒付。有一个月时间我没有进行任何的化疗,Rose与医生们和保险公司大战。哦你不知道Rose这个老太太身上惊人的爆发力,跟保险公司打电话的时候给气疯了,各种粗口。打完电话还不解气,竖中指。。Rose说他们这样做不是只是为了我一个小孩,如果保险公司这样推卸责任,那这种事情会越来越多,会有更多的小孩无法被医治。她还打电话给州议员,让他们一起帮忙。。牛掰。后来他们想到了一个很棒的方法,直接问药厂拿药。我的治疗已经拖了1个月,不能再等了。药厂一看我们家的收入情况,愿意给我们一年免费的用药,医生们就用这一年来和保险公司fight,时间足够。

因为这一个月,我脑中和背上的肿瘤稍微有一点增大,住院进行了几天的放疗以后,有明显的恢复,腰也不痛了,腿也抬的起来了。

唯独令人难受的是我的腿仍旧一直在自己抽搐,这个问题大半年来是无时无刻不缠着我,我的脚只有在睡着时和刚醒来时不抽筋,医生对此束手无策。不过这几天脚抽筋也比原来轻一些,我觉得一切都在一点点好起来。最近医生给配了少量的激素,我的胃口。。好大啊。。没几天就重了3磅,鼻管也不用了,哇咔咔。。而且有个超级会烧饭的大胖子蜀黍来,他曾经在瑞士学过一年的厨艺,当时还在学校教中国菜反赚了学校的钱。。这几天他把我喂饱了,并教了妈妈做好菜。

偶尔我也会有一些小忧郁,肚子里有一包委屈想要倾诉,可是却不知道该说些什么。让妈妈陪我聊聊天总让我感觉好点。比如讲想你们了,羡慕大家出去旅游了,怀念上海的商场了(上海的港汇。。美罗城。。来福士。。美国商场里的服装店都实在太难看,那个Abercrombie&Fitch,我现在最讨厌的牌子!一点设计感都没有,纯粹就是舒服罢了,还有那个Claire’s的首饰店,里面东西的配色怎么可以那么香气的,我还是喜欢来福士底下的Accessorize,可惜这儿木有,还有我喜欢的日系森女风,法国的浪漫风,在这里一点影子都找不到,我因为关注设计和画画,这些都让我好沮丧。)拉丁舞我也学了5年了,有时在老师家练舞的时候已经能完全沉醉其中。前段时间的舞林争霸我看得我心潮澎湃啊,怎么可以这么美这么美的,忍不住自己也跟着脖子扭扭屁股扭扭。我的情绪从来都是来得快去得快,稍微掉几滴眼泪,几分钟以后我就忘了,又想其它去得了。而且我发现自己其实超级表里不一,内心越激动表面上越淡定冷静。。

我记得得病后第一次哭是因为英国学校的事。来到美国以后的生活和在中国的生活是天壤之别,我并不习惯这里的慢生活,我也不喜欢回家啥事都没有的感觉。而且我和这里的学生完全没有共同语言,他们发来的短信完全在闲聊瞎扯浪费时间,一点意思都没有。我想到了与哥哥妹妹一样前往英国学习。我知道我一个人在那里上这种贵族学校会要面对很多,他们培养的是简朴的贵族精神而不是享受奢侈生活。并且出来后的学生以后都会穿梭在世界一流名校的,我也想通过自己现在对学习的热情,努力到那个程度。我知道其实爸爸心里很希望我能进普林斯顿这种大学。我一提出这件事情,大家就开始操作了,叔叔马上帮忙联系学校,学校连参观的邀请都发来了。怎么样都要进这校门,我内心是很坚定地。我把我所有的梦想,所有的激情以及对未来的期待都寄托在了这件事情上面,当我知道我要错过这个机会的时候,我只感觉自己被击垮了。。未来。。怎么办。。这条路。。怎么走。。我上次写给小妹妹的那封信你也看过,我相信你一定感受得出我那时文笔下所隐藏的热情。大家都劝我说身体最重要,没了健康的身体,啥都做不成,可我就是放不下,放不下。那种想要紧抓但是发现自己握空的感觉,好难受。我尽量不让自己去想这些事情,心情些许好点。时间过去的久了,我也就再次学会放下啦。我们小镇专门为我请了两位老师来家里为我授课。数学老师Mr.William 还有英语老师(她还负责教我科学和美国历史)Elise。Elise70多岁了,当了很多年的老师,对中国很感兴趣,她经常跟我讨论中国的新闻,鼓励我表达自己的想法。每次上完课她都对我妈表扬我,说我是她执教那么多年遇到的最特别的学生之一。不过我们跟学校的进度严重脱节,没办法,其余的只好等回到学校以后补了。数学老师Mr.William是紧跟着学校的学习速度来给我上课的,每周来一次,把一周的作业布置掉,然后还给我extra work。美国的数学是简单的,但是书上的英文是讨厌的,大片的应用题。有些内容我会把意思搞错,看不懂,或是有些东西我漏掉了没学过。不过因为以前中国的数学把我练得杠杠的,老师觉得我很流弊。最让他惊讶的是我的作业,他从没见过错那么少和那么整洁的。。这也是在世外养成的好习惯,要求自己一定要做的干净,我曾经最享受的作业就是整理笔记。

生病以后我最爱干的事情就是画画,一直在研究,发现了好多道道,比如彩色铅笔该怎么用,还有彩色铅笔还分种类这种的。。因为肿瘤的原因,我看书看不进去,白纸黑字一看就就犯晕乎,更别提阅读英语原文了。(哈,我最近在做的是搜集各种漂亮的立体书还有画册,天,这真真是一些画家和艺术家智慧的结晶。)叔叔为我找到一个很棒的画画学校,希望能请学校的老师来。刚开始我们选择的老师有一副画被挂在白宫里,不过她后来没有时间来给我上课。阴差阳错,遇到了现在的51岁的Joe。Joe那时刚好结束了他为期好多月的环球旅行,他后来告诉我说,在他听到我的时候他就觉得自己一定要来教我。就这样,大光头碰到了小光头。他一直都在鼓励我出自己的画册,我也在构思中。我觉得遇到他我太幸运了,他什么都会,他可以教我缝纫,可以教我做泥娃娃,可以教我设计。。Photoshop。。这货是万能的!!万能的!!而我原来选的老师,只会刻板的肖像画。与他初次见面时,我其实自己有点自闭,不喜欢和人交流,我已经太久不接触朋友,我不知道我该怎么做,怎么打招呼,怎么聊天。真的是他慢慢把我拉出来的。他看出我有些小自卑,所以一直都在给我阳光,一直在鼓励我,说话好温柔。。不过我的画也让他好满意。。他说基本上没遇见过那么爱画画的,而且那么容易教的。。他内心超级年轻,有时竟让我觉得自己和上海的同学朋友在一起。。记得某晚上我和老妈开玩笑说:“麻麻,你说是不是我再也碰不到安彻这种脾气那么好的人了呀?”妈斩钉截铁的回一句:“找Joe这种哒!”

通过Joe,我们又认识了思密达James以及一大圈朋友。我才来了一年。。朋友就比叔叔他们在这儿生活了20多年的多。。James以前是韩国特种部队的,来到美国以后开过首饰店,曾经为好多明星(诸如麦当娜)做过珠宝。他说一条Tiffany的项链,100美元,他用同样的材料,成本是2美元,坑爹吧。。每次她老婆生日或者结婚纪念日,他都会亲自做好看的首饰,我妈羡慕嫉妒恨啊。后来他遇见了他的师傅,我想这是他人生的转折点吧。他把开的珠宝店关了(因为满骗人的,现在开了一家干洗店,他说帮别人洗洗干净,也洗洗自己,我们经常在他的干洗店玩),有两年与师傅天天上山练功(具体练啥我不知道)。他们每天吃的仅仅是一些类似蔬菜汁的东西。James是生来就通灵的,不过他身上有很强的的能量,他还可以看透你的身体,并且感受你的灵魂。这两年他带着他的这圈朋友,一直在帮助癌症患者,希望用他们在练的气功,帮助提高病人自身的免疫力,让病人用自己好的细胞去和坏的细胞斗。很多病人医生都已经贴好死刑标签了,通过他们的帮助,现在都活了下来,并且肿瘤在缩小。关于这圈人实在有太多可以和你分享的神奇事情,好玩的也许以后当面聊天的时候我再告诉你吧(太多了- -)。信里我主要分享他们给我带来最重要的东西,也是我生病到现在学到最宝贵的东西。

从遇见James他们的第一次,他们就不断地给我positive的想法,告诉我一定没事的,让我学会说谢谢。和他们在一起总是很有爱,他们不管性别,想抱在一起就抱在一起,想打谁一下就打谁一下。James指着自己的心脏对我说过“我们这圈人之间不用脑子,用这儿。我们拥抱因为我们相爱,哪里还管男女呢。”我发现他们每个人吃饭的时候都会说一句“thank you,food!”我刚开始觉得这是一件好荒谬的事情,喝口水吃口饭也说谢谢,好有空哦。谢谢你,眼睛,你带我领略四季的变幻~谢谢你耳朵~你让我聆听到大自然的声音~谢谢你,手指~你让我可以给傅爹打字写信~~他们要我与他们一样天天谢谢地球上的万物。刚开始好不习惯,也挺不屑的,可是多说几次以后,我竟迷上了这种感觉。我喜欢每天清晨那种沐浴在晨曦中感恩万物的感觉,真美好,真幸福,小清新。我喜欢这种珍惜幸福的方法,让我觉得我活的好充实好充实,让我觉得我什么都有,啥都不缺。我感恩老天给我的一切,给我的生活,无数句小小的谢谢合成了一个幸福的小光头,活在蜜糖里的小光头。

我对现在的状态很满意。我感受到了来自家庭的深深的爱。如果不是这场病,我可能几辈子都悟不到这家庭能给我带来的力量和温暖。我感受到了家庭成员中那种紧密的联系,尽管有时一片大海会把我们隔开。妈妈在上海,从不打扫,从不做菜,来到这里后,所有事情基本都是她一个女人搞定的,我知道她真的很累。加上我的病,让她精神压力大大的。她属于急性子,而且对很多事情超级敏感,扶我走路的时候我膝盖稍微往下一弯她就可以急得要掉眼泪,有时我摔倒了,第一件事情是安抚她的情绪,告诉她我没事。James一直看出实际上我和我妈两个人中间。。我不是需要他们安慰的那个。。他上次和我妈妈说:“Chloe的灵魂真是太强大了,现在关键是你,你要淡定,相信Chloe会没事的。”他们现在每次都对着我妈说半天,让她学会平静,她自己也进步好多,我觉得她比以前稳得住了。我在家时能引她笑就引她笑,我觉得我把她带的越来越二逼青年欢乐多,我们俩不仅是母女,还是好亲好亲的朋友。有时我裤子有点下去了,她就红着脸娇羞的叫一句“娇臀~”,有时她就在啄磨该给我啥新绰号了。小光头?白煮蛋?还是猕猴桃?恩恩,还是叫小桃子?我问她,妈妈,你最大的愿望是什么呀?她笑着回:“我要俩小混血玩玩,一男一女哦。”(James已经帮我看过啦,我会有四个小孩,顺序是女,男,男,女,注意啊,是跟一个人生的啊,混不混血血那我就不知道了。)自从我生病以后,我想买什么就买什么。。上次Cindy来的时候。。我没看价格就拿了一盒觉得看上去很好的彩色铅笔。。后来老妈付钱的时候在大叫:“天啊,180美金?!”我也三天两头在网上选衣服,到处follow我喜欢的插画家的画册,买立体书,花去了不少钱,可是她从来没说过不买,都是一口气答应。有时我觉得价格自己也不敢直视了,我就让她看电脑的时候睁一只眼闭一只眼。。不过她都是二话不说立马给我买,这要是在以前。。早就给她骂的头破血流了。。某次花100块人民币在田子坊自己买了条裙子,(就是你说那条很有星范的长裙)她骂了我一下午。。。说我拜金女- -帮我算每月的开支。。靠,后来还不是拿照相机拍我拍的老欢的!!现在这种问题根本不存在,有时妈妈问我,茵茵,你咋那么乖啊,我说,因为你们啥都满足我啊,我要啥有啥,能不乖么。

让我最开心的,是我的爸爸。从小到大,他真的没骂过我一句。有次小时候不懂事儿拿别人东西,他们都对我很失望,妈是狠狠的骂我,老爸郁闷了半天还一脸平静地问我:“茵茵,为什么这样做?你喜欢我们可以买给你。”他不骂我,我也没感受到他多爱我。这么多年来,没有拥抱,没有亲亲,没有摸头,没啥交流,只是站在我身后默默的关注着我。他应酬好多,不出差却总是醉醺醺的晚归,还爱抽烟。我唯一记得和他在一起干的几件事情,就是1)很小的时候趁他刚起床,上衣还没穿,扒他内裤,他死命的逃。。2)和他对打拳击,可是到最后都在挠对方痒。。3)他带我出去,想买啥就买啥,不论多贵。其它,额,真的都想不起来了。。我心中一直有个小小的疑惑,爸爸到底爱不爱我,我知道,答案是必然的,可是,我好想感受到噢。把我点醒的,是那位烧菜好吃的不得了的胖蜀黍。他在去年九月的时候和爸爸一起来过一次纽约看望我。我们俩单独聊天时,他突然瞪大眼睛强调说:“茵茵呀,你的爸爸真的很爱你,很爱你。”这句话给我力量,我虽然表面平静的听着,心里却怦怦怦的。我慢慢去发现一些微小的事情。我发现自己难过时爸爸脸上掠过的表情,眼角的一点湿润。他超级关注着我头上的那些小草,人在纽约,每天要摸几下;人在上海,每天视频时都得看看。因为药的关系,我偶尔会发生大便失禁的事情,大半夜的他舍不得叫妈妈起床,于是轻轻地帮我拿新的衣服,清理马桶,弯下腰擦干净地上的东西,好像在做一件很熟悉的事情,脸上一点厌恶的表情都没有。我那次是真的被感动到了,回到床上偷偷的哭,论是让我想象一千遍,我也想不到我的爸爸可以为我做这样的事情。他在我心中的形象其实一直都是高高在上的,蹲下来给我擦大便。。太夸张了。。太夸张了。。后来与他提起此事时,他微微一笑:“你不知道我从小帮你弄大便的啊?小时候你的尿布都是我换的勒!”回到上海,他是给累垮了,有次回去38天,光应酬便是30多顿。视频里的他,睡不好,消瘦了不少。可他还是亲自跑遍古北的日本超市,就为了帮我找喜欢的零食。对他来说,烟是每天的必需品,谈事喝酒想问题时总是烟不离手。这是几十年的老习惯,以前怎么让他改他都不肯,现在他说他愿意戒烟。他与我做了一个约定。我只要天天开始尝试吃东西,并且天天锻炼,他也一点点剪抽烟的量,等到我能走路了,和正常人没啥区别了,他也就完全不抽了。噢买尬这件事情早就被我列在不可能发生事件里拉!!他居然可以为我戒烟!!!!!我给激动死了!!

爸爸以前在深圳有一份很好的工作,后来和妈妈结婚后他来到上海,从领着800元还要打八折的工资开始(当时妈妈已经月收入过万),一直奋斗到现在,给我们一家幸福安定的生活。当中也遇到过完全没钱的生活,也遇到困难,都挺过来了。妈的原话是“他43岁那年我们家像是被逼死了。”我心里其实一直很佩服他,可是和他总感觉隔着一堵墙。我不知道我心里的爸爸,是怎么看她这个女儿的。我好想知道他对我的感受。生病以后与他亲近了很多,交流也多了点。我渐渐地喜欢上他在餐桌上发表的演讲,(他吃饭的时候,有时会开百家讲坛,分享自己新看来的新闻或知识。。内容我原来都不感兴趣)感受到他的睿智。前几日来美之前,他突然发来微信说特别佩服我和妈妈 。

“上天发了个棘手的牌给你,你勇敢的接住了,并泰然地打了出去,好样的!”(他的短信原文)

我提出痊愈后想去旅游一年。(跟老妈讨论时,她说她比我还想去玩,不过这事儿她跟爸爸说不好,要我来提出来以后,爸爸肯定同意,然后她就跟在我后面跟着蹦跶~~~)我要自己做一份份详细的旅游攻略,自己查各地文化背景,好好地玩同时学习。爸管这叫“游学”。他觉得这比让我在这里上学有用多了。我和他谈论未来。我说也许我的求学之路就是这样很奇葩,可能我进不了那种精英学校,但是我知道我在走一条最适合自己的路,最开心满意的路。他回:“适合自己才正确,才是精英教育,社会是多元化的,那种学校培养不出多元化的人才。”他从不把我当一个小孩子看,有时即使是工作上的事情,或是他最近在看的书,他也会拿出来和我讨论讨论,我从中受益不浅。有时爸爸的朋友来访,和他们聊天也算是我现在学习的一种方式,学习他们的思维和遇到事情后的处理方式。

我和他之间的关系,越来越近。这种感觉真好。

生病后的我,过着很自由的生活,尽管大部分时间宅在家里,但我的思维确是无限广的,我开始一些我在上海永远都不会做或说做不了的事情,比如说疯狂的搜集立体书,跟踪喜欢的插画家,构思自己插画册,在amazon上翻任何关于艺术的东西。。在买衣服方面,美国对我来说是有局限性的,可是在买这种画册书籍方面,这儿是个天堂。我觉得我从当中学到很多,探索到很多。

我喜欢上这种生活。不紧不慢,没有压力。我感受到自己学会放下好多负担,累赘。我学会自嘲,学会给予而不是奢求,学会关注别人的感受,而不是只关心自己。看着妈妈天天这样劳累,揪心的难受。美国这个社会又让我善心发泄,立志以后有能力了一定也要帮助别人。短短的一年,我真的体会到了别人活了几十年都没遇到过的酸甜苦辣。体会到了和家人之间紧紧相扣的联系。我自己都惊异于自己的成长。这些,要不是这场病,我可能还要再悟几十年。说真的,我心里一直认为这场病是老天送我的大礼。让我发现身边的美好,懂得知足。我终于明白为何儿时大人们说我身在福中不知福。我一定是天底下最幸运的孩子,来到这个家庭。

傅老湿,我知道你前段时间碰到了不开心的事情,这么多天过去了,你的心情也应该调节的好些了。在这个上面,我也真的不知道该如何安慰你。。我现在是信佛人,所以我相信缘分。前世种下因,这辈子才会有果,若你们前世无缘那便今生无缘。如果你用未来的眼光来看现在,这真的会是一件好小的事情。那时候你可能已经有个幸福的家庭了,或是你更享受单身生活,谁又知道呢。缘它来了就是来了,你抵挡不住,可是它若要离开,你也拦不了。很多大道理我们都看过,只是这些我们还没彻底通。我失恋的时候也伤心,可是终究过去了,现在回看那八个月,真是特别美好的一段日子。我很谢谢他,那段时间对我太好了,是我实在不懂事。。不知道为啥最后一段时间心情特别的低落。。帮我跟他说sorry。。。。。而我也对他没啥留恋了,只是觉得与他做做朋友一定很好玩。好事坏事还不是跟着时间的风尘飘,慢慢都会平息。你说人生是苦难。我认为没什么词可以代替“人生”,苦难只是助你修行。你要明白你在修行什么。人到最后最宝贵的还是一个快乐美丽的灵魂,为你的下辈子积德。

我觉得佛教净化了我的灵魂。比如以前看见别人拿到啥好的东西了,心里会羡慕嫉妒恨,想着咋自己没。现在完全不会,我会好诚心的祝福别人,觉得这是他通过自己的努力得到的,他应该获得的。每次出现恶念的时候我都努力把自己的思维进行调转,久而久之,我的心灵变透彻了。面对很多人很多事,我都变得宽容起来,不去计较。别人说我坏话我也完全不生气。我不会吝惜对别人的感恩,我要抓紧时间对别人好,给别人带去快乐。妈问我现在怎么那么菩萨心肠,我碰碰自己脸上的肉肉,说:“你们天天这样把我当小活佛供着啊,你看,这脸都越来越有佛像了。”人在做天在看,我坚信老天不会放弃世间任何一颗美丽心灵。如果你有兴趣,你可以去网上搜搜卢军宏台长的白话佛法和卢军宏台长看图腾的视频。他就像观音菩萨的使者一样,不知道救活了多少人了。。。我从小最讨厌听讲座,可是唯独他的白话佛法,我听的津津有味,某晚晚上已经困得不行了还坚持听完。看图腾的视频,你运气好的话一下子就可以翻到那种法会现场鬼上身的片段,哈哈,我看了好多次了,不过视频里有些词你可能听不懂,比如“小房子”什么的,这是跟念经有关的,你要想知道我以后回来可以和你说,好多道道呢。。。我在这里也就适可而止了。我已经写不出啥感触了(词穷了,主要得自己体会),因为它实在改变了我太多,教会我太多。

傅胖胖,生活中总有不如意,可是当你把自己定位在几年以后,再看这些事情时,会觉得他们好渺小。如果我把一个人的一生,分成8个10年,是不是听起来很短。我觉得接下来的日子,要好好放大自己的幸福,学会感恩。这些谁都懂,但是要想办法通。如果要说我活到现在很重要的人,我除了爸妈第一个想到的是你啊!我们这些小怪兽即使遍布在天涯海角也想着你,流弊的你,给我们每个人的青春都带来了不同凡响的意义,这应该是你所享受的。14岁生日的那本子,我们满满的爱!真希望以后能有一次属于班级的旅行,一定能成为所有人重要的记忆。分别的确是一件特别痛苦的事情,可是因为有了分别,才有相聚的快乐,才有回忆的珍贵和分量。

我觉得天是很公平的,你缺了什么,它会在别的地方补给你,你多了什么,他又给你割掉点,最后合成无数段精彩人生。怎么体会人生,关键是自己的心态。

from 小光头,么么哒

2013年 5月30日

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A letter from Chloe

        Hi, dear teacher Fu, it will be a very long letter…to record this very special year!
        First I would like to talk about the symptoms I had before finding out about my cancer.
        Actually, in the days when I went to Guangzhou for American immigrant visa, I was feeling myself behaving quite abnormal physically–I can’t walk in straight lines. Instead, I walk in a curving S line. I started to have headaches and backaches. Sometimes when I’m focusing to look on one object, I will start to feel dizzy, seeing blue sparks before my eyes. When I was trying to dance Latin, I feel like I couldn’t exert all my strength to dance. Mom once took me to the hospital to check, and I did a brain CT, but couldn’t  find out about anything that’s happening to my body.
        When I arrived in America, my waist began to hurt even more than the beginning, I wasn’t able to run, and afterwards I began to trip over when I walked. My family always thinks that it’s because of my sitting posture, they asked me to lie on the bed more and keep warm, but it didn’t work. At that time, the feeling of my back and below began to vanish slowly. And all of that led to my big day, June 3rd.2012.
        That morning, when Mom was touching my waist, I couldn’t feel anything. Mom took me to the emergency of the hospital  and at once took an MRI. The doctor said in the X-ray he did see something, but he wasn’t sure what it was. Thereupon, an ambulance took me to the place where I am now taking the treatment, Westchester Medical Centre. I stayed in a very nice hospital, and it’s not far away from home. On the ambulance, Mom and I were quite excited: “Wow, we got to sit in this kind of vehicle when it was only the first time we come to an American hospital, this is wicked!” I was directly sent to the PICU, the kids in the room close to me looked like they were at their last gasp, but I was the only one who stayed wide awake. I looked like I was just coming in for a visit. From this day, my hand began to fill up with many needle tubing, until the doctor did an operation on me with burying a broviac straight to my thorax. Therefore, it was much easier for transfusion and drawing blood from my system instead of using needle to jab me! It wasn’t hurting that much after that. Ha, it was my first operation, but I wasn’t really nervous. Well, I would just sleep safe and sound until the whole process was over. Later, the doctor did a biopsy operation for me, to extract  few  tumor from me and take them for testing, to confirm which cancer I had. Because my kind of cancer was hard to distinguish, they sent those slices to StJude Children’s Research Hospital for pathology tests.  At last the results came out, my cancer was called GBM, belongs to the cerebral cancer. But according to the position and the form my cancer has appeared to be, doctors weren’t able to find that kind of case in history. The doctor said usually GBM appears to be a glob of white stuff concentrating on the brain, but mine was quite like powder spreading across the brain, and it originally started from the waist of my body, which they have never seen before. But luckily, the powder stuff in my brain hardly had any weight at all, so it wasn’t oppressing other nerves directly.
The day I was admitted to the hospital, I met the most experienced female doctor here just in time, Dr. Tugal. She was a nice and amiable old lady, my first attending doctor. (Doctors here work in team. There’s also doctors of neurosurgery, doctors of radiotherapy etc., Dr. Tugal is like the leader of the team.)What makes me really delighted was the environment, the doctors and the nurses. The children’s  hospital that I was in was decorated quite like a small castle, with lots of exhibition places that made it feels like a tiny museum. All the rooms are single rooms, with a clean toilet, swept and garnished. There was a TV inside and an air bed, adjustable for sitting and lying. If I want to call  the nurses, pressing the button is all I have to do. I can see the helicopter parking area outside my window, with lots of green planting area. The doctors here were kind and enthusiastic, that made me feel a sense of warmth. I could see those doctors hurriedly running, carrying suitcases in the hospital. Sometimes when it’s already the middle of the night, after doctor  Tobias finished doing the operation without taking off his surgical gown, he would come up the stairs hurriedly to check if I’m alright. The nurses here were also responsible and nice. Sometimes, when they saw me alone, sad or bored, they would come and comfort me with jokes and encouraging words. Coming to America, I always want to leave people with a good impression of me. Often I would give them a smile when I first saw them. Time after time, smiling automatically became my habit, my signature. Almost everyone that came to my room remembered my smiley face.
        Charity organizations often come to the hospital. When I was in hospital, there’s an organization called Mikey’s way foundation . The person that was called Mikey was no longer alive. He got into accepted Harvard, but had a rare kind of gastric cancer. He felt very lonely when he stayed in the hospital, so he thought it was necessary for children in the hospital to communicate with the outer world. His wish was fulfilled by his family. The trolley that came to my room consists of iPad, iPhone, iTouch, a mini laptop, Samsung galaxy mobile phone, tablet PC. I could choose one from them. I was quite bored at that time, so when I was staring at those devices, I was in a huge shock. It was the first time I felt touched after I arrived in America. They noticed that I wish to become a fashion designer in the future, they started to give me all sorts of advice—-introducing good designing schools to me,  written down carefully for  my mom. That day, I felt the warmth a good heart can bring, and my benevolence was also “germinated” from that day.
       There were various activities in the hospital–watching magic tricks, making cakes, drawing, playing games and so on. But it was too childish for me! So in the ward I began to draw with all my passion. In my free time, I would look at the posters saved in my phone, to see if there’s anything I could use for reference. I would also go surfing online and watch television programs. In the hospital, I met a social worker called Rose, our first friend in America. She used to be a cancer sufferer,  Dr. Tugal cured her. Rose is a lovely old lady who loves to put her phone into her breast pocket. She’s little short and chubby, with blonde hair and cherry lips, she looked really cute. She was always trying hard to help our family in every aspect, trying to make me happy. Sometimes when she goes for travel, she would bring presents for me in interesting stores. :) . Another person that set my remembrance most strongly was my nurse Geni. She’s very kind and often made jokes to me. She always wanted to introduce her daughter to me, and let us become good friends. What I feel here were their love for me and their passion for work. Even the people who did valvet  parking at the hospital  would help Mom to carry the heavy wheelchair.
        At that time I was being injected with hormones, so my appetite was huge. One croissant…and after a minute…another butterfly cookie…My face soon turned chubby, it almost looked like a nose was stuck in a butt. Sometimes when I was in bed, staring at my muffin top, I would fumble with it and comfort myself and imaging that I was pregnant….When I was in hospital, there was a tough issue,  that was constipation….For once, oh, nothing comes out in six days. Of course the doctor would use some powerful medicine that made me poop six times a day….
        After I got out of the hospital, I had to go there every morning for radiation therapy. In order to let me not moving during the process, the doctors made a cast especially for me, allowing me to sleep comfortably. After the whole therapy was over, I received an award with all the signatures from the radiation therapy department.
        The first round chemotherapy medicine was very strong. Every time I received it (once every two weeks), I always had vomiting and diarrhea, my stomach hurts with waves of pain. It was a feeling of suffocation, it felt like every organ in your body was about to explode. That period was the time I first came up with the thought of suicide. Sometimes I want to stab myself to death, how could it be so much pain?  The more the chemotherapy received, the more the side effects happened.  First, it was the hair. At the beginning,  a few hairlines was just falling off, later the situation got worse, a slightest touch would lead to a pile of hair falling off. So I just  let mom become “the country barber”,  shaving  all  my hair off  in the garden. When she was cutting my hair, I wasn’t feeling very sad or depressed. I knew it was the part that I had to experience so I wasn’t afraid of facing that.  Mom was worried that I couldn’t accept the truth instantly, but what she didn’t know was I have already seen the new me in my phone screen. For a professional beauty queen, hormones have made me chubby which I accepted fully at ease, but letting me greet people bareheaded….That wasn’t acceptable! In the beginning I would wear  wigs. When my uncle came, I would rush lamely to the kitchen (because I couldn’t walk at that time). Mom came and exclaimed at me: “Are you out of your mind?!” After a few seconds her furious eyes would return to calmness again, because she knew how I felt. Gradually, hair wigs no longer exists in my life. It was too much trouble, and in summer it would become even more of a problem. I finally deviated from the beauty queen path that I used to go for so many years! No matter how I appeared to be, I am just me, a beautiful me, just another beautiful firework bursting with flames.
           The next problem became eating food. My huge appetite was caused by injecting hormones, now I no longer inject hormones, my stomach began to become on strike. Whenever I see food, I feel pain in my stomach. Eating was even harder, the taste was weird. Sometimes if I chew food for just little time,  I would  throw up everything.  During that time, my weight was like China’s stock market, decelerating faster every day. Because I couldn’t take in food normally, I lacked energy, I would lie on the sofa in a daze, sleeping and resting. Chemotherapy is like using a nuclear bomb to kill a fly, and my body wasn’t able to take in nutrition I  was supposed to get. When I thought about those days now, it was the worst and the most miserable days of my cancer treatment period. Every day I tried to avoid food like running away from a debt. I felt dizzy and faint. When I finally couldn’t take it anymore, I got a fever and went into the hospital again. The doctor then put in a NG tube through my nose so that nutrient solution would go directly into my stomach , at least it could guarantee the basic nutrition I need. That was the best way, and the only way.
        I was never afraid when meeting new things, having an exploring spirit, so the first time I was putting the NG  tube, I neither cried nor screamed. Doctor put the tube into my stomach easily. But the tube needed to be changed every month, and it’s easily coming out when I was vomitting. So there were many troubles occurring in the hospital because of that. Sometimes the tube couldn’t get into the stomach but came out from the mouth, sometimes the tube was tied into a knot in my throat (when the tube was pulled out, my nostrils largen…) basically every time it was putting, I would have a bloody nose. So putting the NG tube became the thing I was afraid of the most. When I heard about doing it again, I would shiver, weep and wail. But the more times it happened, the more experience I had. The trick was to sit up straight, lower your head, and when the tube touched your throat, start swallowing your saliva. Ha, this trick worked all the time. Basically the process was non-recurring using this trick. I had a bloody nose every single day, because the chemotherapy medicine has killed my white blood cells at the same time. I lost my immunity and couldn’t go to public places. I had to do everything carefully, aware of the fact that bacteria could go into my body at any time. During a few months time, because my white blood cells index was too low, the doctor gave me the GCSF to allow the chemotherapy to continue normally. At first I thought it just go through the broviac in my body, with no pain at all. Well, who knows, nurse Geni showed me a pack full of needles. I had to take the injection every two weeks. How nice….The pain of being injected by needles was what I hated the most….As a result, mom became the family nurse. She pushed the syringe very slowly, only because she was worried that I would be in pain.
            My birthday last year, was quite weird, but unforgettable. Typhoon Sandy came that night, maybe arriving knowing it was my birthday….There was a blackout that night and I blew the candles in the dark. What touched me the most was I received the 12 o’clock birthday wishes from my friends in China. Thank you, teacher Fu, I’m really touched. Even though I couldn’t see you, I could feel the joy and happiness you brought for me. After I got sick, everyone was concerned about me, trying their best to cheer me up. Many of my classmates’ parents followed my Weibo and Wechat, encouraging me. Like Sophia’s mom, basically every tweet that I posted, her comments were below. Cindy and Angela came to see me, when I met them, I became more talkative than I used to be, spilling out everything I wanted to say in weeks. A friend of  dad from China Television invited me to see the show of China’s Got Talent and The Voice of Asia in New York City. That was the first mini trip that I took since I got sick. I slept well in the hotel. And ever since then, I found out that I could slowly begin to take in food.
        Christmas arrived. Rose told me that there’s an organization called Make a Wish, it helped sick children to fulfill their wishes. You could go to travel, decorate your own room, see celebrity….You could even meet the president! I want a dog to accompany me, Ha, “boss” came. But later because mom was too busy, and boss was barking too much that making me headache,  we had to give it away. The two volunteers that came was very out-going, they carefully recorded every little wish of mine, and sometimes texted to check if I’m doing well. The day “Boss” arrived, they gave an extra 1000 dollars check, saying that they wouldn’t want us to have financial pressure because the arrival of “Boss”. God, everything, everyone was caring for us. So touching!
       The first round of the therapy has gone on for half  year, the tumor was well controlled, but the problem was, did it shrink? I think we should give an ending to that.
        My second visiting staff showed up—Dr. Jubinsky!!!!
The doctor looked almost like a  (can’t find right words in English)  , messy hair, messy mustache. The first time we met, I felt strange. When my first round of therapy was not certain, he brought his assistant Mocher to our hospital, like God has already paved the path for us. After several meetings with him, I noticed he has followed my kind of disease for five years. The cocktail chemotherapy medicine I used for the second round was matched and studied by him, with fewer side effects than the former one. The only thing to concern was the decrease of the platelet. This round of chemotherapy’s concept was close to Chinese way of curing  a conservative therapy, doing chemotherapy and trying not to harm other cells. Maybe the time of curing might take longer, but I could live with the tumor, like a normal human being. Everyone felt satisfied with this plan. A patient had the same GBM like me, his tumor was compressing his nerves heavily. Mocher said the first time he saw him, he thought this kid wouldn’t survive. The kid’s family followed Dr. Jubinski all the way, from their hometown to here. After using Dr.J’s cocktail  medicine for eight months, his tumor has shrinked a lot. We were all excited when we heard about it, it meant I had a great chance being cured. The therapy was decided, but the insurance company wouldn’t take it. In America, everyone buys medical insurance. People who works pay every month, when they get sick, the insurance company would pay all the expenses. The cocktail medicine from Dr.J  was extremely expensive (If the insurance company had to pay, they had to pay at least twenty thousand dollars every month.) Since these cocktail medicines were researched by Dr.J himself, there was not enough evidence to prove the therapy would work, so the insurance company refused to pay. For about a month I wasn’t getting any treatment, Rose, the doctors and the insurance company had a “war”. Oh you wouldn’t know how much power was hidden in an old lady like Rose, she was furious when she was talking with the insurance company on the phone, swearing. After the call her anger hasn’t gone, so she gave a middle finger….Rose said what they did was not only for me, if the insurance company continues to be irresponsible, there will be more children that can’t be cured. She called the state councilor asking for help. Wicked! Later they came up with a great idea—asking the medicine factory directly for medicine. My therapy was already been delayed for a month, so we could not wait. The medicine company agreed to give us medicines free for one year. Doctors could use this one year time to fight with the insurance company, there was enough time.
        Because of that month, the tumor in my head and in my back increased a bit. After doing chemotherapy for a few days in the hospital, there was a distinct recovery—my back no longer hurt and my legs could be raised.
        The only thing that disappointed me was my leg was still cramped. This problem has troubled me for half a year. My leg only stopped cramping when I was asleep or when I just woke up. The doctors couldn’t do anything about it. But my leg hurt less these days, and I felt everything was getting better. Recently  doctor gave me a little hormones, and my appetite… was huge…I increased 3 pounds in a few days, but no longer needed my NG tube, Ha! Furthermore, there was a chubby uncle who was excellent at cooking came and visited me. He studied cookery in Switzerland for one year. At that time he was teaching Chinese cuisine in school, earned the school’s money….These days he stuffed me up with his amazing dishes, and taught mom a few.
         Sometimes I got a little depressed, there were a thousand thoughts in my mind wanting to be express, but not knowing what to say. Letting mom to talk with me always made me feel better. For instance, talking about how much I missed you guys, how much I wanted to travel, how much I missed Shanghai’s mall(Shanghai’s Grand Gateway….Metrocity….Raffles….The shops in America malls were not in my favor. That Abercrombie & Fitch, was what I loathe the most! It has no design at all, just comfortable. And Claire’s, all the items in there was quite tacky. I still liked Accessorize in Raffles City, too bad here there was none. And the Japanese natural style that I liked, the French romantic style, I couldn’t find any here. Because I was interested in designing and drawing, this all made me sad.)I studied Latin dancing for five years, sometimes when I was rehearsing in the teacher’s house I completely indulged myself in it. The dance competition that took place recently made me feel passionate. How could it be this beautiful? I couldn’t help but moved my neck and my hip with the beat. My emotions came and went quickly, dropped a few tears, but after a few minutes, it would all go away. And I found myself not like what I appeared to be, the calmer I appeared to be, the more excited I felt on the inside.
        I remembered the first time I cried was because of the British school. The life I had after I arrived in America compared to when I was in China was completely different. I wasn’t used to the slow motion life here. I also didn’t like the non-pressure I felt when I came back from home every day. Plus I had not enough common topic with the students here. I thought about going to Britain to study like my brother and my sister. I knew I would have to encounter a lot of obstacles alone in the elite school there. What they cultivate is the modest elite spirit instead of enjoying the lavish life. The students there would be in world’s top universities one day. I wanted to achieve that through my passion for study now. I knew dad secretly really wanted me to go to Princeton University. When I first asked about this, everyone started to help me. Uncle began to contact the school, and the school sent the open day invitation. No matter what I had to step in the school gate, I was sure of that. I placed my entire dream, all my passion and all my hope for my future on this. When I knew I was about to miss this opportunity, I felt I lost all my battles…My future…What to do…This path….How to walk….You have seen the letter I wrote to Black, so you could feel the passion inside my words. Everyone was telling me that my body health was the most important thing, without a healthy body, you couldn’t achieve anything. But I just couldn’t let go, I just couldn’t. That feeling of holding on to something so tightly but discovering that I’ve lost it hurts. I tried my best not to let myself think of those things, and I felt better. Time after time, I learnt to give in again.
        After I got sick the thing I enjoyed the most was drawing. I’ve been researching it and found many types, for example how to use color pencils, and the classification of color pens…Because of the tumor, I couldn’t focus on reading books, I felt dizzy once I saw black words printed on white paper, not to mention reading English novels. (Ha, what I’m doing currently is collecting pretty 3D books and designing books, God these are the combination of artists’ intelligence)Uncle found me an amazing art school, hoping that the school could send a teacher. At first what we chose was a teacher who got her painting hanging on the wall, but she was too busy to teach me. Luckily, I met my current teacher, the 51-year-old Joe. Joe just ended his world trip that lasted for months. He later told me that, when he heard about me, he felt like he should come and teach me. Just like that, the bid bare-headed met the small bare-headed. He was always encouraging me to publish my own drawing collection, and I considered about that. I thought I was so lucky that I could meet him, he could do anything, he could teach me sewing, could teach me to make mud dolls, could teach me to design…Photoshop….That stuff was supreme!!!!Supreme!!!!The teacher I was supposed to get could only do portrait painting. When I first met him, I was actually very reserved, didn’t like to talk to people. I haven’t made friends in a long time, I didn’t know what to do, how to say hi, how to chat with people. He really pulled me out of it. He saw that I was a little self-abased, so he always gave me warmth and sunshine, always encouraged me with soft words. But my painting always made him satisfied.  He said he never met anyone who liked drawing that much, and anyone who was so easy to teach. His heart was young, sometimes made me feel like I was with my Shanghai friends….I once remembered I joked with mom one night saying:” Mom, do you think I would ever meet someone like Arthur, who had such a good temper?” Mom said with a firm tone:” Find one like Joe!”
        I met the Korean James and a large circle of friends through Joe. I have only been here for a year….And I had more friends than uncle who has lived here for twenty years….James used to be from the Korean Special Forces, he opened a jewelry shop after he arrived in America. He used to make jewelry for many celebrities. He said if he uses the same material to make a Tiffany necklace which is worth 1000 dollars, it will only cost him 20 dollars…..Every time when it’s his wife’s birthday or their wedding anniversary, he would make pretty jewelry by himself. Later he met his master, I think it was the turning point of his life. He closed the jewelry shop (Because it was quite deceiving people….Now he opened a dry clean shop, he said helping people to do cleaning, was also cleaning himself inside. We always played in his shop.) And do spiritual exercises with his master for two years in the mountains. What they eat was only something like vegetable drinks. James was born a psychic with strong powers in his body. He could see through your body, and feel your spirit. These two years he worked with his group of friends, to help cancer patients to increase their immunity, letting the patients to use their good cells fight with the bad. Many patients were tagged “death” by the doctors, but through their help, their tumor is shrinking. About this group of people, there are so many magical things to share with you. In the letter I only shared the most important things they brought me, and they were the most precious things I have learnt since I got sick.
        From the first time I saw James, they always gave me positive thoughts, telling me that I would be fine, letting me learn to say thank you. It was full of love whenever I was with them. They didn’t mind the gender difference, they hugged whenever they wanted, and they hit each other whenever they wanted. James pointed to his heart and said to me:” Our group of friends didn’t use our rational thinking, we use here. We hug because we love, who cares if we’re man or woman.” I found out that they always said “Thank you, food!’ before they eat. At first I thought it was ridiculous. Saying thank you when you drink a cup of water? That’s absurd. Thank you, eyes, for letting me see the change of the seasons~ Thank you, ears, letting me listen to the sound of the nature~ Thank you, fingers, for letting me type letters to Teacher Fu~ They wanted me to thank everything on earth every day. In the beginning I wasn’t used to it, and I was quite disdain to do that. But after saying it for several times, I was in love with that feeling. I love the feeling when I was thanking all things on earth, soaking in the first rays of morning sun. It was beautiful, it was happiness, and it was pure. I love this way of cherishing happiness, making me feel that I am living fully, enriching my life, making me feel I had everything, and lacked nothing. I’m grateful about everything God has given me, the life God has given me. Countless “thank you” is combined into a happy bareheaded girl, a bareheaded girl who lived in honey and sugar.
            I am so grateful and gratified with my present life because I feel the profound love from my family. If there wasn’t this disease, I couldn’t ever perceive the strength and warmth my family gave me. I can feel and I can sense the connections between every family member, though sometimes we are separated by the boundless sea. I cannot even recall once that my mom has done housework or has cooked, however, after we came to this distant place, she has dealt with everything on her own. I know she is exhausted not only physically but also mentally because of my illness. My mom is always a pepperbox, and is also sensitive to the surrounding things. Every time when I bend my knees a little bit while walking, she is so worried that tears are gathering in her eyes. Sometimes when I fall, the first most critical thing to do is to comfort her and tell her that I’m fine. James has found out that my mom is the more vulnerable one between us and actually, I am not the one needing their comfort, from the very beginning. He convinced my mom once as the following: “Chloe has a really strong and pure soul, and she is a real believer and fighter. Now, the key problem is about you. You have to stay strong and calm. You should believe that Chloe will be fine.” James and his friends always talk on and on with my mom, to help her to stay calm. Now she has a huge progress and is more cool-headed, as I think. She is becoming more and more hilarious and lively, just like the host in talk shows under my tuning as I am always trying to make fun of her at home. We are more like best friends forever instead of being mother and daughter. Sometimes my pants slip down, she will be blushing and say “Wow, Bubble Butt!” And once in a while, she is thinking about giving me new nicknames. Little bare head? Boiled egg? Or kiwi fruit? Or little peach? Once, I asked her: “Mom, what’s your biggest wish?” She smiled, and answered without hesitation: “I want  two little half-bloods to accompany me, one boy and one girl.”(James has predicted that I would have four children in the future, and the order of their birth is: girl, boy, boy, girl. Pay attention, their father would be one person. As for if they are half-bloods, how would I know?) Since I got sick, I have had the privileged to buy everything I want. Last time when Cindy came to visit me, I chose a box of coloured pencils which was awesome without seeing the price. Later when my mom paid for it, she exclaimed: “Oh, my god! 230 dollars? Seriously?” My mom never refuses my request and fulfills every need I have, although I have spent a lot on purchasing clothes on the web, following the picture albums of my favorite artists, and buying pop-up books. Sometimes, when I cannot look at the price myself, I tell her that she should pretend she doesn’t know that. Merely, she still bought them for me without any complaints. If this happened four years ago, she would blame me. I remember once I bought a dress in Shanghai which was 16 dollars, she blamed me for the whole afternoon, called me “material girl” and used a calculator to show my monthly spending flow. Afterwards, she was quite satisfied and pleased with her photography on me in this pretty, 16 dollar dress. However, these kinds of problems and complaints never exist anymore now.
The most delightful thing is my dad’s behaviors. Actually, he has never blamed me once up till now. When I was little, I took away other’s stuff once, and my parents were both so disappointed. My mom blamed me, and my dad was depressed, really depressed, but he just said a few words: “Chloe, why do you do that? We can give you everything you want.” He didn’t criticize me, and I did not really feel his true love to me. All these years, the communication ways between him and me are hardly intimate, with no hugs, no kisses, no petting heads. That subtle figure is standing behind me and gazing at me. He has a lot of social niceties but no business trips, is always drunk and always gets the smell of the disgusting cigarettes. I only remember a few things I have done together with him: 1). I always pull his underwear off when I was little and he was trying so hard to escape 2).We did boxing together, but always started to tickle each other at last  3). He led me out, and bought whatever I wanted. Anything else? Eh. None. I am always confused and obsessed by one thing: Does he really love me or not? I know the answer must be a positive one, but I just want to feel it more. The person who illuminated me and answered my question is the uncle who really can cook very well. Last September, my father and he just came here to visit me. When he and I were having a private conversation, he suddenly stared at me and said: “Chloe, you father really really loves you, so much.” These words had truly given me strength and faith. Although I was seemingly calm, my eyes had already got moist and my tears were gathering. Gradually, I started to notice something I had never discovered, like his moist eyes when I felt sad, or like his special attention to my poor hair when he was in New York, even when we were on Facetime. Incontinence is one of the side effects of my sickness, but he never gets impatient with it. Sometimes when this happened in midnight, he didn’t want to wake my mom up, so he just quickly handed me over some neat clothes to me, cleaned the toilet, and bent down to clean the floor. He was so proficient about this that he seemed accustomed. I was so touched that I cried covering myself in the bed. I could never imagine that my dad could do these things for me. He was also presented in a prestigious form in my heart. This is so exaggerated, so overstated. Later, when I mentioned this, he just smiled and said: “Don’t you know that your diapers were all changed by me?” When he went back to Shanghai from New York, he was so exhausted. He had more than 30 appointments in 38 days once. He looked so sallow in the video, however, he insisted on going through all the supermarkets in our district to find all the things I like to eat. For him, cigarettes were something he is addicted to and can’t live without. They were there holding in his hands whenever and wherever. This had been his habit for decades and no matter how I persuaded him, he never gave in. But ever since I was sick, he has made a promise with me: as long as I try to ingest some food every day and exercise, he will reduce the amount he smokes. And when I can walk like a normal person, he will completely give up smoking. Oh my god! This had already been listed in the “Impossible”. How can this ever come true? I am so excited!
My dad used to have a really good job in Shen Zhen, but after he married my mom, he moved to Shanghai. He was a common employee like everyone else, getting low salary 80% of 100 dollars per month (at that time, my mom already could earn more than 1200 dollars per month). He was always working so hard, and until now, he has his own business and provides my mom and me with a cozy and comfortable environment. In this process, there were days with no money and a lot of difficulties, obstacles and setbacks, but he got over them one by one. In my mom’s words, it is: “We were almost at a dead end when he was 43.”I admire him a lot and regard him like a lighthouse in the dark, but I used to feel like there is a wall between us, separating us. I did not know how my dad felt about his daughter. I just wanted to feel it. But after I was sick, our relationship was closer and more often. I started to like his presentation at dinner time which I used to get sick of and totally have no interest in his lecture of the boring news articles and fun facts. For the first time, I felt his love, his passion and his wisdom. Just right before his departure from NewYork, I received a text message from him, which I was so sure I could not forget for my entire life. In this message, I heard the words that brighten my world: “Chloe, god dealt some thorny cards for you to play, you held them courageously and played them out calmly. I am so proud of you, my beloved daughter.”
I came up with an idea that I would like to travel around the world after I am cured. I did a plan for the whole routines, searched about different culture of different parts of the world and planned to study while travelling. My dad called this a “study tour” and considered this more useful than just going to school because this enabled me to look at the world from different perspectives and explore the beauty of the world. I told him about my planning for my future. Although my way of studying was odd and different and maybe I would never enter a prestigious university like Harvard, I was following a path which suited me most and made me most gratified and happy. He responded: “The path which suits you most is the best and this is elite education. The society is diverse, and universities like Harvard will not probably shape an all-round person.” He never sees me as naïve child, and he shares every idea he has with me, like the book he likes, or even his business. I have gained a lot from these, and I have learned his way of critical thinking and his scenarios for different situations.
We are closer and closer to each other. I can feel it now.
I got more freedom after I was sick. I felt free and unrestrained. Although most of my time was spent at home, my mind was free and broad. I started to do the things I had never done in Shanghai, like collecting pop-up books crazily, browsing the Amazon just to find something related to art, following my favorite illustrators, or even outlining my own illustrations. There are limitations for me to buy clothes in the U.S, but it is a paradise to buy art albums and books. I think I have really learned and explored a lot of potential things here.
I love this kind of life now, with no rushing and no pressure. I have learned to unload some burden and be humorous when facing negative things. I also have comprehended that giving is more meaningful than receiving and demanding, as well as thinking for others more and changing perspectives instead of being selfish. I feel so worried and distressed to see my mom being exhausted. The society in the U.S. makes me feel like helping others, and doing anything I can do to make a different. I am determined to help others and repay all the people who have cared about me and loved me. In just a year, I have experienced ups and downs which others may not encounter through their entire lives. I also have felt the connections between my family and me. I was even surprised by my own growth through last year. If I did not get this disease, it would take me decades to get these. Really, I always think that this disease is a gift from the god and I am the lucky guy to get it. It has let me find the beauty around me has let me learn the truth of life and has let me feel grateful and gratified for all I have. Eventually, I understand why adults always say we are the ones who do not know we are born in fortunate. I must be the most fortunate girl in the whole world to be a part of this family.
Dear Mr. Fu, I know you have been unhappy these days. But I think you must have adjusted yourself and feel better now since you are such an illuminating and optimistic person. I do not really know what the best way is to comfort you on this occasion. I believe in Buddhism, therefore, I believe in fate. The things you did in your past life results in your present life. If you two did not belong to each other in your past life, then you would not be made to be together this time. If you take a long-term consideration, it will not be a big deal any more. Maybe you will have already gotten a consummate family in a certain point of the future, or maybe you enjoy the life of being single more. Who knows? If you are supposed to be together, then nothing will separate you. In contrast, if you two are not the determined couple, you will eventually be apart someday. We all know these facts, but we just do not want to accept them and face them sometimes. I was once lovelorn too, but after all, it just passed. Now that eight-month relationship has been really splendid to look back and to recall. I really feel gratitude to him for all the happy time we spent together and for him looking after me. I just want to convey my apology to him because I had made some many mistakes in this relationship and had not cherished his love. Presently, I just want to be friend with him, a true friend. All the things no matter positive or negative will all be forgotten by time, through the wind year after year. You say that life is a misery. But I don’t think there is anything which can replace “life”. All the misfortunes are just a part of the series of experiences. You have to know what you are experiencing. The most precious thing to own is a pure soul, accumulating blessing to next life.
Buddhism, so far has purified my soul. For example, I would feel jealous when I saw other people owned something I am eager to get in the past. But now, I won’t. In contrast, I will congratulate them genuinely because that is what they deserved to have through their hard work. Every time when the evil side of me appears, I will adjust myself in time. Time over time, my heart has become clean, pure and honest. I have also become more tolerant and generous without any fussing. I will not be mad at all when others criticize me. Moreover, I won’t save my gratitude to others and I will try my best to do good for them. My mom asked me: “Why did your love become so universal now?” I pinched my chubby face and replied: “You all treat me like a little Buddha. You see, I have been more and more alike to a Buddha.” I believe God won’t abandon any of the pure hearts because everything we do has been supervised, although we don’t know. That’s pretty much I want to talk to you. (I’m so speechless now because I have gained so much from this illness.)
Mr. Fu, there are so many ups and downs in our life. But when you put yourself on the time of decades of years later, you will find out these difficulties are so insignificant. If I divide a person’s life in to several decades, it will sound really short, won’t it? As so, in the following time, I will magnify all the happiness and be grateful. Mentioning the most important person in my life, except my parents, is you. We, 27 class-9 students will miss you wherever we are, because you have brought us so many happy and unforgettable memories and somehow change our lives. You deserve all of the love from us. The 14-year-old yearbook is for you, forever and whenever. I really hope that we can have a graduation trip which undoubtedly will become everyone’s most meaningful and memorable experience. Saying goodbye is the most painful thing in the world, but it is farewell which makes reunion and gathering cheerful and makes the memory precious and important.
God is fair. When he closes a door, he will open a window for you. You will never be perfect, but you will have something worth cherishing. He will compensate for what you lose, and will take away something that is too much. However, these fragments are the ones formed a splendid life. The key of experiencing life is your mind.
From Chloe Chen
2013. 05. 30