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書封 搖擺角夢想家
Rated by 0readers

搖擺角夢想家

Published
2026/01/01
Format
PDF
Category
Subject
ISBN
9786263647091
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◎一個搖搖擺擺仍能身心自在的角落,就是夢想的家!
◎不是傳奇,卻用盡生命書寫,寫給自己,也寫給罕症社群。
◎面對無法逆轉的命運,你只能擁有更多韌性、勇氣和對生命的熱愛。

❤我叫林詠寶
遺傳型脊髓性小腦萎縮症(SCA)的患者,
這種簡稱為小腦萎縮症的罕見疾病,在發病後協調能力將逐漸退化,
從行衡感漸漸喪失到無法行走,失去對肌肉的控制能力,
無法開口說話、進食,到最後躺病床。

❤為自己和家人行動
我的家族有著小腦萎縮症的遺傳病史,包含我與我的媽媽,
家族的三代九人都患有小腦萎縮症,
看著他們生命的掙扎讓我決定:
我要在我還能夠選擇時,為自己的人生行動。

❤我想留下一點甚麼
我想過虎死留皮,而我能留下什麼?
大人物做大事,小人物就「做我能做的事」。
我的這些生平故事,當然比不上網路小說纏綿悱惻,
但這些吉光片羽勝在真實,
是我當時遇事的感觸切片,是我短暫生命的領悟。

❤從搖擺到擺渡
我的一生或許稱不上傳奇,卻還是充滿著戲劇性,
同時也是我在面對每一個困境時,決定踏出那一步的勇氣。
從民國80年開始,在那個醫學還不發達的年代,
為了找出家裡的怪病,動員整個家族的人北上住院;
7年後小腦萎縮症終於被正名,透過報紙與傳媒認識更多病友
一同創立了「小腦萎縮症病友協會」;
與深愛卻終究無法並肩行走的丈夫離婚,爭取兒子的撫養權;
在宜蘭陪伴兒子成長,看他接觸古箏,找到生命中熱愛的事;
追尋自己的木工夢,在宜蘭把小廢墟動手修繕成自己夢想的家。

❤該被記住的時光
這本書記載了1/3左右我認為值得出版的文章,
來簡單真實陳述個人的生命史,
做個留念也跟罕症與病友及好友分享,
感恩大家長期一路上的支持與鼓勵!
  • Place of Publication 臺灣
  • Language 繁體中文

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