解放日报--给无力者力量 中/ English/French

摘自 解放日报
 

 

http://www.jfdaily.com.cn/gb/node2/node142/node143/userobject1ai268687.html

                       给无力者力量    
  
     http://www.jfdaily.com 2003-9-7 10:55:13       稿件来源:解放日报    
  
--------------------------------------------------------------------

    曾经有病人这样描述,得了这种病,人就像树木渐渐枯萎一般,不知道明天会变成什么样子。
  ———采访手记


  一群特殊的病人
  这是一群特殊的病人,肌肉不停地病变萎缩,今天还能蹒跚挪步,明天可能就得坐轮椅。生命的最后驿站,也许就剩下眼睛的间或一眨,或是嘴唇轻微翕动,却再也发不了声。
  也许你对于这种“神经肌肉疾病”还有些陌生,但史蒂芬·霍金的样子你一定记得,这位被尊崇为继爱因斯坦之后最杰出的科学家,丧失了语言能力,全身只有三个手指头能动。
  专家介绍,神经肌肉疾病种类繁多,目前国内尚无系统的流行病学调查,但仅其中的杜兴氏肌营养不良症(简称DMD),在每3500个成活男婴中就有一例。这是一种遗传性不治之症,他们中的许多人甚至过不了青春期,就寂然而去。对这一疾病的诊断直到上世纪80年代才有了重大突破,在国内连许多医护人员对此都缺乏认知。
  个中痛苦自不待言。一而再、再而三地被误诊,是许多病人共同的遭遇。他们尝试了各种偏方,不少人卖房借债四处求医,以致生活难以为继。
  生理上的弱势,伴随的是心理上的积弱,无声无力的生存状态下,是更加无助无望的精神深渊。孑然一身似乎是他们不得不作的选择,即使惊诧爱情动人的瞬间,自卑感和有可能遗传的阴影也驱使着他们逃避。眼睁睁看着自己一天天萎缩,生命力一丝丝地从体内抽离,他们却一筹莫展,不敢计划未来,也无从计划未来。


  在生命底线上抗争
  抗争,为了活出尊严,活出价值,他们中的一些人一直在与疾病抗争。
  在病友的眼中,身为大学老师的朱常青和他们一样,又和他们不一样。同样的是病,不一样的是性格中的无比坚韧。
  她从不轻言放弃。10年前,当身体出现异样,她拿着学生的考卷和脸盆,从容住进了医院。上下班挤公交车,踏板太高跨不上去,父亲就用一张小板凳送她上车。手不能高举写板书,她就花几个钟头把讲义做成多媒体教案,两只手累到痉挛。一次半夜急病发作,四肢冰凉,差点一口气没缓过来,可天色放亮她仍赶到学校,一连上了7节课。就是在相依为命的父亲中风住院的日子里,她打着点滴,拖着瘦弱的身躯,仍在学校、医院间奔波往返。
  “趁我还能走得动,给自己希望,也给别人带来希望。”其实她所谓的“走”,那一高一低的起伏,在普通人眼里已是艰难的跋涉。可她不仅为患者上学、就业牵线搭桥,组织专家和病友见面恳谈,还自费开设了国内唯一一家肌病专业网站(www.mdachina.org)。网站是在闭塞中起步的,缺乏权威及时的信息,她就自费出国参加论坛。在一次持续7天的国际会议上,每天从早上8点到晚上10点,她不停地与专家交谈,每天都累得要趴下。就是凭着这样一股毅力,网站得到了美、日、法、加等国家神经肌肉疾病协会的支持与授权。网站也是在困顿中起步的,所有的前期投入和后期维护,是她拿出了自己微薄的积蓄。网站更是在艰难中起步的,除了一些专家病友帮助翻译资料,真正全职的工作人员只剩她一个。一天仅5小时的睡眠,她仍觉得时间不够用。病情需要劳逸结合,可她在电脑面前一坐就是半天,怕上厕所她干脆不喝水。为了鼓励登录网站的病友,她主动打电话给他们,手握不住话筒,就整个人趴在桌上,左手撑着右手,右手勉强把话筒贴在耳旁,时间一长,全身都变得麻木了。
  林先生是坐在轮椅上接受采访的,他的双手已举不过头顶,双腿也伸不直了。谈及过去种种磨难,他笑说站在了不同的峰顶,看到了不同的风景。
  中学时挤公交车去学工,腿部力量不够,人多时根本挤不上,无奈之下,在门没有关之前,他就挤在最后,贴在车门上。从农场返城就读电视大学,教室在三楼,他只能右手扶楼梯,左腿跨两级台阶,撑住左膝盖用力站起,然后提起右腿,再直起腰。不想脱掉一节课,更不愿麻烦他人,他总是第一个赶到教室。参加工作后,他步行更加艰难,每天须穿过狭窄的马路菜场去上班。惟恐一摔不起,他站在摊位之间的空档,看准前后没有自行车,就走到前面摊位空档处,再看有没有车,再往前走……短短100多米,竟要战战兢兢走上10分钟,这一走就是多年。
  “我天天都很忙,没有时间去考虑痛苦。”而今除了为肌病网站翻译资料,他每天教小朋友学英语,还揽了一些打字的工作。
  尽管事先就知道,18岁的小冯患有先天性肌肉松弛症,但见到他的一刹那,仍有些震惊。他半坐半躺在电脑面前,双手被支撑固定着,尚且能动的两个手指头正在敲击鼠标。这是一个缺失了行走记忆的孩子,他从来就没有站立过。
  但他从不埋怨自己的命运,更不厌恶自己。他正在学习日语和电脑编程,在网上结识了不少朋友。从10岁起他就打定主意将来要独立谋生存,眼下正为一个网站做软件翻译。他喜欢这种团队的感觉,既需要别人,也为人所需要,这在他看来是最有成就感的事情。他的长远目标是做一名日语翻译。“我的生活没有灰暗过。”他清楚自己与社会有一些空间上的距离,但他自信在时间上是保持同步的。


  呼唤,让生命活出精彩
  抗争其实是生存状态的一种折射,是在无力无望中的绝地反击。如何改善他们的生存环境,使孱弱的生命个体能够活得更加从容,更加有价值,让我们携全社会之力一起来努力!
  采访每一个病人,从他们清澈的眼眸中,我们都能读出那份对医学突破的深切渴望。然而,目前国内的研究现状不容乐观:专家乏善可陈,科研环境也不尽如人意。由于研究经费的严重不足,一些专家被迫转变研究方向,而年轻人更不愿意承此衣钵。多一些重视,多一些投入,这将是众多患者的福音。
  “真正的快乐就是让自己有用。”许多病人在谈到活着的价值时,都希望为社会所用,而不只是社会的负担。生存价值的认同,就是对生命尊严的认同。然而,他们中的大多数却在偏离社会的轨道上生活,行动的不便,教育的缺失,就业的艰难,使他们的生活几无质量可言。可他们同样向往受教育,以点燃智慧的心灵。有的人在生病前就有一技之长,他们不想让自己的经验从此荒废,他们更希望社会能多提供一些生存途径。
  很多患者从疾病那里学会了未雨绸缪,家里的床、轮椅、凳子,甚至马桶都是同样的高度。而在一些发达国家,由政府或民间资助成立相应的组织,除了对患者的康复治疗加以指导,还对患者的活动能力进行全面考查,从而为患者设计调整居住、学习和工作环境,让他们尽可能自立。因此建立相应的协会和疾病康复机构,帮助患者创造无障碍环境,有很多工作等待着我们去做。
  访问量超过12万,论坛帖子超过9千,病友们纷纷争当版主,中国肌病网成立一年来正逐渐成为病友们的另一个家。然而,网站创办人朱常青对网站的命运却不无担忧:“现在维持已很艰难,不知今后会怎样。”网站的运作需要不断的投入,更需要工作人员和志愿者的竭诚加入。
  这是一次聆听,在他们难以承受的痛苦中,掩不住对生活的追求。
  这更是一次呼唤,让我们尽所有的努力,给无力者以抗争的力量。
  
  
    作者:本报记者黄海华实习生吕欢

捐款

"常青基金"人民币账号
‘Changqing Funds’
(RMB Currency Account)

名称:上海阎宝航社会公益基金会(请注明"常青基金"专项捐款并用短信,传真或Email告知以便确认和感谢)  
Name: Shanghai YanBaohang Foundation (please add “ ‘Changqing Funds’ for neuro-muscular disease  research and help”, and inform us by sending short message, e-mail or Fax. Thank you for cooperation.)


开户行:022210-工行上海市淮海中路第二支行
Bank: Shanghai Huaihai Road(M) No 2 Office, Industrial and Commercial Bank of China (ICBC),
帐号:1001221009014454290
Account Number:1001221009014454290

捐款联系方式:
Contract us:

MP: 86-13681966781
E-mail: cqzhu@mdachina.org
Fax:021-58788808



English

                         Give Force To the Weak
Once it was described by some patients that suffering form such kind of disease would make people wither just like trees. The patients of such kind of disease don’t know what will happen in the future.
--A Record of an Interview
A Group of Special Patients
They are special patients. Their muscles atrophy gradually. They can have a walk today. But perhaps they have no choice but to sit on the wheelchair tomorrow. In the last station of their lives, they are just able to wink their eyes, and move their lips. But they cannot say a word.
It is likely that you are unfamiliar with neuro muscular disease. But you must remember Stephen Hopkin, who is called the most distinguished scientist only second to Einstein. He lost his ability to speak. Only three of his fingers can move.
Experts said neuro muscular disease includes many types. Presently there is no systematic investigation of the epidemic. But only as the DMD, there is one case in every three thousand five hundred living baby boys. This is an incurable genetic disease. Some patients of this kind of disease even can’t live through the adolescence. Breakthrough didn’t appear until 1980’s. But many doctors in our country are lacking in the knowledge of the disease.
Pains of the disease can’t be expressed by words. The common suffering the patients face is the repeated mis-diagnosis.
They tried various treatments. Some patients even sold their houses and borrowed money to afford the medical expenses, which made their life difficult to continue.
The physical weakness accompanies the mental tiredness. Living in the state of silence and forcelessness, they become even more desperate. They have no choice, but to keep single even though the moving moment of love, takes up in front of them. They will be forced to evade love because of self-contempt and the fear of descending it to their children. They feel worried when they atrophy every day and the disease deprive their lives of their bodies. So they dare not plan their future and don’t know how to plan it.

Struggling on the Lifeline
Struggle! To live with dignity, to realize their value, some of them have been fighting against the disease for a long time.
In the eyes of other patients, Zhu Changqing as a university teacher is the same with them but meanwhile quite different. They are all ill, but the difference lies in her fortitude.
She never gives up easily. Ten years ago, when she fell ill, she went to hospital calmly with the students’ exam papers and her basin. When she has to take the bus with the crowd on her way to work, she can’t get on because of the height of the step, so her father sends her onto the bus with a platelet. She can’t raise her hand to write on the blackboard, so she has to turn the teaching materials into those displayed on the computer. Often she gets so tired that she has spasm with her hands. Once, taken bad at midnight, she got very cold all over her body and nearly lost her breath, but she still went to work the next morning and gave seven lessons on end. Even when her father got stroke and she herself had to have an intravenous drip, she still plied between the university and the hospital in a bad condition.
“I should give myself the hope and meanwhile give others the hope as long as I can move. ” Actually, the movement she meant is just the ups and downs of the feet in the eyes of the ordinary people, but it’s quite difficult for her. She not only helps her fellow patients to go to school and have a job as well as organizes the experts to communicate with them but also starts the only MDA website of China (www.mdachina.org) with all her own money. At start, there was not enough authoritive and up-to-date information, so she went aboard to attend the forum with her own money. Once, there was a international conference lasting for seven days. She discussed with the experts everyday and got exhausted. By virtue of this kind of fortitude, the website got support and authorization from the MDA associations of America, Japan, France , Canada and so on. At start, there was the problem of fund; from the investment to the maintenance she had to pay with her little amassment. At start, there were also many difficulties; she had to work all alone as the only one full-time worker of the website except some experts and patients helping to do some translation. She slept only five hours a day, but she still felt the short of time. Her ill condition necessitated her working with proper rest, but she always sit before the computer for a whole day. She hated the trouble of going to the WC, so she just didn’t want to have drink. To encourage the friends logging to the website, she often telephoned them. But it was very difficult to hold the receiver, so she had to inclined against the table with her left hand holding her right one and the right hand holding the receiver near her ear with much difficulty. In this way, her body often got numb.

Mr. Lin was interviewed on his wheelchair. His hands have already been unable to lift above the head and his legs unable to stretch straight. Talking about the past difficulty, he just smiled and said that he saw many different views on different submits.
When he had to take bus to learn in the factory in his middle-school time, he couldn’t get on the bus because of the lack of strength in the leg. So he had to follow others at last and lean against the door before the door was shut. When he had to come back from the farm and learn in the TV broadcasting university, he could only clang to the handrail with his right hand, went upstairs by two steps with his left leg, stood up difficultly with the support of his left knee, lift his left leg and then straighten his waist. He didn’t want to miss any lesson or trouble others. He was always the first one getting to the classroom. When he had a job, his movement became more difficult, because he had to go through the narrow commodity market on his way to work. Being afraid of not able to stand up after tumbling, he had to stand in the space between two booths and went to another space when he made sure there was no bikes in between. He went to another space, made sure no bike, went to another… just 100meters should have taken him ten minutes with too much fear. And he went to work like this for many years.
“I’m so busy everyday that I’ve no time to think of my pain.” Nowadays he does some of the translation for the MDA website, teaches the children English everyday and does some typing sometimes.
Though I knew that the 18 years old Xiao Feng was inflicted with the SMA, I was shocked at the first sight of him. He half sit and half lie before the computer with his hands supported by something. The only movable two fingers are using the mouse. He is a boy without any memory of walking, and he never stood up.
However, he never complains about his fate or hate himself. He is learning Japanese and to compile programs one the computer. And he made a lot of friends on the Internet. As early as ten years old he made up his mind to live independently in the future. He is a software translator in a website now. He like the sense of belonging to a team, needing others and being needed , which is of great success for him. His long-term goal is to be a Japanese translator. “I’ve no darkness in all my life.” He said. He knows that he really has some distance with the society as far as space is concerned, but he is confident that he is contemporary with the society.  
To struggle with the disease, which is a refraction of the state of life, is to counterattack forcefully in despair. Let us all members of the society try our best to improve their living environment and to make the life of the weak easier and more valuable.
When interviewing the patients, we can learn from their clear eyes that they are looking forward to the breakthrough of the medicine. However, presently, the status quo of research in our country is not that optimistic. We are lack of experienced experts and the environment of scientific research is also unsatisfactory. Due to serious lack of research fund, some experts are compelled to charge their research field. And the young are unwilling to succeed such kind of research. The more importance we attach to them, and the more we devote to them, the more hope the patients will have.
“The real happiness lies in making oneself useful to the society.” When many patients talked about the value of living, they all hoped they could contribute more to the society instead of becoming the burden of the society. Recognizing the value of living equals to recognizing the dignity of life itself. However, most of them live in the orbit, which deviates form the society. Their life has almost no quality because of their inconvenience of action, their lack of education and their difficulty in finding jobs. But they also yearn for education, which can make their soul wise. Some patients are good at one kind of skill before catching such kind of disease. They don’t want to give up their skill. They hope our society can provide ways of living for them.
Many patients learn from the disease that they make preparation before the unf0rtunate things happen. The bed, the wheel chair, the stool and even the stool are at the same height. In some developed countries, some related organizations sponsored by government or citizens not only guide their patients hoe to do their recuperative treatment, but carry out overall examination of their ability to move. Thus, the organizations can design the surroundings where the patients could live study and work, which make the patient try their best to live on their own. So we have a lot of work to do in order to establish related institutes, and recovering organizations, which help the patients live in a free environment. The website of mdachina established one year ago. During the one year, the visiting time surpassed thousand times and the visiting time of BBS surpassed 9 thousand times. Patients tried to become the host of the BBS. However, Zhu Changqing the founder-member of the website is worried about the fate of the website, “It is very difficult for us to maintain it. We don’t know how it will develop in the future.” The work of the website needs constant devotion. It needs more people and volunteers to participate.
We listen to them respectfully. Though it is very difficult for them to endure such kind of infliction, the disease can’t prevent them from their pursuit of live.
We call for the help of our society. Let’s make our efforts to give the weak more force to struggle with the disease.

Donate:

‘Changqing Funds’
(RMB Currency Account)


Name: Shanghai YanBaohang Foundation (please add “ ‘Changqing Funds’ for neuro-muscular disease  research and help”, and inform us by sending short message, e-mail or Fax. Thank you for cooperation.)

Bank: Shanghai Huaihai Road(M) No 2 Office, Industrial and Commercial Bank of China (ICBC),

Account Number:1001221009014454290

Contract us:

MP: 86-13681966781
E-mail: cqzhu@mdachina.org
Fax:021-58788808



-------------------------------------
French
           La dépêche vient de :le quotidien « La Libération »      
Autrefois il y a eu quelques malades ont décrit comme ça ,si l’on attrapait cette maladie ,on ne saurait pas comment on deviendrait le lendemain .
----------la note d’interview
Ce sont des malades spéciaux dont leur muscle s’affaiblit sans arrêt ,peut-être ils marchent avec peine s’assoyant dans le fauteuil roulant demain . A Le dernier pas de la vie ,il ne leur reste que cligner les yeux parfois ou qu’ouvrir la bouche ,mais ils ne peuvent pas pousser le son.
Tu aurait pas connu « la maladie musculaire et névrosée » ,mais tu dois te rappeler de  Stephen Hawking ,nommé le meilleur scientifique du monde après Albert Einstein ,qui a perdu la compétence de parler en restant seulement 3 doigts utiles.
L’expert disait qu’il y a toutes sortes de maladies musculaires et névrosées dont la Dystrophie musculaire Duchenne arrive à un sur 3500 bébés (masculins),mais on n’a pas fait l’enquête d’épidémie systématiquement . C’est une maladie incurable génétique ,parmi ceux qui l’ont attrapé la plupart ne pouvaient  même pas passer la jeunesse ,et mourir avec solitude.On n’a fait le grand progrès sur le diagnostic de cette maladie que jusqu’aux années 80 du siècle dernier, en Chine un grand nombre de médecins et infirmières manquent la connaissance nécessaire . beaucoup de maladies connaissaient la mauvais diagnostic fois par fois ,leur peine est souvent inexprimable.
Ils essaient de diverses ordonnances officieuses,de nombreux personnes aller voir médecin partout après avoir vendu leurs maisons ou dû la dette ,enfin ils manquent de quoi de vivre . La faiblaisse du corps avec celle de la mentalité,se trouvant sous la situation de manquer de la force et de la compétence de parler,ils croient surtout dans le gouffre mental sans aide sans espoir.Ils n’ont que la choix d’être solitaire,malgré le moment de le bon amour ,le complexe d’inférioité et l’inquiéude de la maladie génétique potentiele les pousser à s’enfuir. En voyant moi-même depérir de jour en jour,la vie est apparue petits en petits,ils ne savent quoi faire,osent pas imaginer l’avenir
faire appel à,laissons vivre confortablement
En réalité, la lutte est la réflexion de la circonstance de la vie,est aussi le dernier coup sous le désespoir.Comment améliorer la condition de la vie,laisser le faible vivre à son gré et avec valeur,nous allons tous ensemble faire des efforts .
On peut comprendre le grand désir d’essor médicale en voyant leurs propres yeux pendant l’interview. Mais,en ce moment la situation de la recherche n’est pas très bien :faute des experts,des problèmes de l’environnement de recherche. Il existe quelques spécialistes étant obligés de changer la direction de la recherche et les jeunes ne pas vouloir les  suivre non plus à cause du manque du capital.Si l’on y attache l’importance plus grande, y jette plus d’investissements,les patients pourront tenir la bonne nouvelle.
  ¨Le vrai joie c’est de rendre moi plus utile.¨ Bien des malades espèrent être utile pour notre société au lieu de la charge en parlant de la valeur de vie. L’admission de la valeur de vie est aussi celle de la dignité de vie .Pourtant la plupart d’entre eux ne peuvent pas vivre une vie normale,l’inconvénience de la marche,le manque del’éducation,la difficuleté de cherchant du travail,tout ça rend leur vie plus misérable. Bien que cela ils désirent aussi être élevés pour remplir leur coeur d’intelligence.Quelques uns ont des compétence avant d’être malade,ils ne veulent pas laisser tomber leurs expériences,et ils espèrent bien la société qui pourra offrir plus de façon d’existence .
Il y a des malades sachant faire des préparations par la maladie,à la maison le lit ,le fauteuil roulant ,les chaises,même la vespasienne sont en même hauteur.Et dans les pays développés,des organisations soutenues par le gouernement ou la société ont fait des enquêtes sur la compétence d’action du malade à part le conseil du traitement pour qu’ils guérissent mieux,et qu’on les aide à régler l’environnement de la résidence ,d’étude ou celui de travail en laissant vivre compter sur eux –même plus vite possible. Il nous reste baeucoup de choses à faire ,par exemple :établir des associations concernant et des organisations où les malades pourront guérir,aider les patients à créer un meilleur environnement.
Le nombre de visites a dépassé 120mille,celui des articles du forum a été plus de 9mille,les malades ont tous voulu d’être maître du webpage,www.mdachina.org devenait éventuellment la deuxième famille des malades depuis une année .  Mais,l’initiative du website---Zhu Changaing s’inquiètait du destin du web : ¨c’est déjà difficile de le maintenir,je ne sais pas comment ça sera dans l’avenir.¨Le fonctionnement du web a besoin des investissement sans cesse,le plus important la participation de travailleurs et celle des volontiers.
C’est une occasion d’écouter leur coeur,ils ont montré la suivie sur la vie bien qu’ils aient des douleurs insuportables.
C’est aussi un appel,nous devons faire des efforts le plus fort possble en donnant la force à ceux qui en manquent pour résister à la maladie.
                           Auteur :le journaliste de notre journal—Huang Hua le stagier—Lv Huan

 

 

©2002 MDAChina.org All rights Reserved |联系我们|关于我们|留言
最佳分辨率800×600;建议IE5或以上版本浏览