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    6. 9個萬分之一的相聚

    9個萬分之一的相聚

    Author 袁鵬偉、顧潔如、陳道怡、劉家幗、羅 揚、李淑惠、賴志銘、尤文瀚、蘇瑞臻
    Publisher 張老師文化
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    Released
    2014/03/14
    Language
    Traditional Chinese
    File format
    PDF (7MB), fit in large screen and Pubook
    Pages
    242
    ID
    30154
    ISBN
    9789576938061
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    9個萬分之一的相聚

    Author 袁鵬偉
    Publisher 張老師文化
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    Released
    2013/01/23
    Language
    Traditional Chinese
    Pages
    240
    ID
    544532
    ISBN
    9789576938061
    DRM
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    NT$252
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    • Intro

    • Chapters

    • Author

    本書是集結九位罕病病友從生命淬煉出的血淚文字。經由病友親自執筆,去領會、詮釋疾海人生,或許筆鋒半熟不熟,或許言未能盡意,但並不因此受限,而是透過自己的探尋,以主體性敘述,更真確地傳達出罕病者的思維。這過程,於寫作者是一場艱辛洄溯,於世人則是意義深重的禮物。
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    我是含著淚水在讀這本書 王建煊(監察院長)
    九色彩虹 陳莉茵(罕見疾病基金會共同創辦人)
    生存.價值.夢想 袁鵬偉.漸凍人(肌萎縮性側索硬化症)
    迎面尋自在 顧潔如.紫質症
    不完美的完美人生 陳道怡.重型海洋性貧血
    17+3 劉家幗.恰克-馬利-杜斯氏
    渺滄海一粟 羅 揚.黏多醣症
    帶著泡泡遨遊 李淑惠.遺傳性表皮分解性水疱症
    從來沒想過 賴志銘.多發性硬化症
    遇見罕見 尤文瀚.逢希伯-林道症候群
    帶病三分好修行 蘇瑞臻.性聯遺傳型低磷酸鹽佝僂症
    【側記】疾海中的修煉 鄭慧卿(營隊召集人)
    【插曲】Skype點燈 共同對話(顧潔如整理)
    【附錄】9種罕見疾病醫療小檔案 罕見疾病基金會
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    袁鵬偉:肌萎縮性側索硬化症患者。生病前走過35個國家,生病後秉持「活在當下」好好過每一天。成功開發LED溝通板,成立漸凍人暨家屬作品的銷售平台「有故事的店」,讓更多病友及漸凍家庭找到尊嚴及助人的喜悅。

    顧潔如:紫質症患者。生病初期,傻傻憨憨地,沒太多悲傷和恐懼;漸漸熟悉疾病後,開始學習愛自己,找尋生命中的感動,開始享受三十萬分之一的罕見際遇。

    陳道怡:重型海洋性貧血患者。一個從小混血為生的女孩,一個熱愛藍天白雲、崇向自由自在的水瓶子,一個像雲般難以捉摸、像霧般難以看透的難搞女人,一個比醫生預測存活年數多活了一輪的奇妙女子。

    劉家幗:恰克-馬利-杜斯氏症患者。黑色幽默的創造者。「我出國囉!如果沒回來,去兩廳院售票領江蕙的票,給爸媽的喔!.......iphone留給我小妹。照片要選那張我自己的素描,千萬不要請人念經,放亂彈阿翔跟伍佰的專輯,念《傷心咖啡店之歌》馬蒂去馬加斯加那一段給我聽。跟『她』說我寫給她的信在love0913那個gmail........ 」

    羅揚:黏多醣症患者。長期以來在別人的期待下成長,總希望能成為眾人心中所謂的好學生或好地球人之類。經過不斷自我審問,發覺能做自己才是最幸福的事。疾病的痛苦阻擋不了自己的行動力,脫離心靈的桎梏是最渴求的願望。

    李淑惠:遺傳性表皮分解性水皰症患者。土生土長的鄉下囝子,喜歡一大片綠油油田園與花田的視野,徐徐微風中忘卻身體的不適。二十七歲投入文化公益活動,慢慢領悟人生的價值與意義。三十八歲第一次穿起短袖,展開如沐春風的人生。

    賴志銘:多發性硬化症患者。一個乳臭未乾的小子,不知天高地厚,自認與眾不同,能使世界某些地方有些不一樣,充滿著矛盾與衝突,遊移於正邪兩端。經歷MS罕見疾病大風浪後,只想是一個平凡人,隨著世界洋流浪潮前進、浮沉。

    尤文瀚:逢希伯-林道症候群患者。喜歡特立獨行,上天似乎也迎合這點而賦予一輩子的「獨特」。藉由旅遊與思考漸漸發現,生命的開始其實就是在等待結束,走完平凡的人生是一種簡單的幸福,而能有幸體驗純粹獨特的生命,就好好地、努力地活著吧。

    蘇瑞臻:性聯遺傳型低磷酸鹽佝僂症患者。一個很用力的人,常把生活過得太嚴肅,後來,慢慢學用「難得糊塗」待人處事。現在有點明白:生命不是輕省的,但也不必然沉重看待,正在練習「舉重若輕」的生活態度。
    More
    • Intro

    本書是集結九位罕病病友從生命淬煉出的血淚文字。
    經由病友親自執筆,去領會、詮釋疾海人生,或許筆鋒半熟不熟,或許言未能盡意,但並不因此受限,而是透過自己的探尋,以主體性敘述,更真確地傳達出罕病者的思維。
    這過程,於寫作者是一場艱辛洄溯,於世人則是意義深重的禮物。
    More
    More
    asnd askw
    More
    More

    Details

    Released
    2014/03/14
    Language
    Traditional Chinese
    File format
    PDF: Fit in large screen
    Provide Adobe DRM
    Provide PDF
    Offer DRM free license
    No
    ID
    30154
    ISBN
    9789576938061
    Released
    2013/01/23
    Language
    Traditional Chinese
    Pages
    240
    ID
    544532
    ISBN
    9789576938061

    心理勵志

    生命故事

    疾病書寫

    罕見疾病

    自我成長

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