With a Caribbean cruise with friends booked for November and a job she loves, Ashley Kurpiel, 31, considers herself lucky. But she has struggled all her life with a condition that is slowly turning her muscles into solid bone - and has already cost her her right arm.
Now, the 31-year-old is hoping to experience as much of life as she can before her muscles seize up for good.
Ashley is one of an estimated 700 people worldwide with Fibrodysplasia Ossificans Progressiva (FOP), an incurable disease sometimes known as 'stone man syndrome' because its devastating effects can leave sufferers completely immobilized, like living statues.
31歲的女子 Ashley Kurpiel 對於她11月即將與朋友共乘加勒比遊輪而感到幸運。不過她從小罹患一種罕見疾病，面臨全身肌肉逐漸鈣化。Ashley Kurpiel 因此失去右臂，但她仍樂觀對抗病魔，認為自己很幸運能保有活動力，還希望盡情享受人生。
她是全球約700名「進化性肌肉骨化症」患者之一，是不治的極罕見疾病，對身體有破壞性的影響力，患者的肌肉會逐漸固化，所以又稱「珊瑚人」，患者有如活雕像。
- Seize up (機器)失靈 / 卡住
My joints seize up in the cold weather. 天氣寒冷, 我的關節都凍僵了。
- For good 永遠，永久 = for ever
I have given up smoking for good. 我已經永遠戒煙了。
- Syndrome (n.) 併發症狀
- Immobilize (v.) 使固定不動
The broken limb must be immobilized immediately. 斷肢必須立即加以固定。
'My condition has made me who I am - an optimistic person with an inner strength and determination to succeed,' said Ashley.
'If I want to do something, then I normally find a way to do it. I don't know how much longer I will have movement in my body, so I want to experience as much as I can now.
'In other cases of FOP people have frozen solid, their jaws locking shut. They can't move and have to talk through their teeth long before they get to my age. So I actually feel extremely lucky.'
The condition arises from a mutation of the body's repair mechanism which causes muscles, tendons and ligaments to convert to bone material when damaged.
Ashley was diagnosed with the condition when she was three years old - six months after her right arm was amputated by surgeons who wrongly suspected she had cancer.
「我的疾病造就今日的我－個性樂觀、充滿內在力量且決心成功的人。」她說：「如果我想要做一件事情，那麼我通常都會想辦法做到。我不知道我還有多少時間能夠自主的行動，所以我想要盡可能體驗現在的一切。其他的病患案例中，他們在活到像我這個年紀之前，上下顎就無法開合，只能透過牙齒溝通，所以我覺得我算是非常幸運。」
當受傷時，身體的修復機能衰退，導致肌腱與韌帶等組織逐漸鈣化。Ashley Kurpiel 3歲半被診斷出罹患疾病，而醫生誤判她罹癌，將她的右臂截肢。
- Jaw (n.) 顎；下巴 ﹡be all jaw 全是空話
- Arise from 由...引起
- Mutation (n.) 變種；突變；變化
- Mechanism (n.) 機制；結構
市場機制不是實現充分就業的最佳體制。
- Tendon (n.) 腱
- Ligament (n.) 韌帶
- Convert +to N. (v.) 轉變；轉化；轉換 = change, transform
The whole office converted to a new computer system last year.
去年﹐整個辦公室換了一個新的電腦系統。
- Amputate (v.) 截肢
Two of her toes were amputated because of frostbite. 由於凍傷﹐她的兩個腳趾不得不截掉了。
- Surgeon (n.) 外科醫生
'During my childhood my mobility was fine, because I was still young,' she added. 'But I was quite unhappy. I felt very different from the other children at school, and I didn't have many friends. I was quite shy and kept myself to myself. It wasn't much of a life.'
Her symptoms first began to show when she was a teenager, with gradual muscle stiffening accelerating as she grew older.
'I began to feel my body stiffen gradually. I knew I was finally facing the onset of the condition,' she remembers. 'I'd been told what was going to happen, and feeling the first symptoms made me want to experience everything life had to offer - before it was too late.'
She married Shawn Keeney, 31, a man she met online, but the pair divorced in 2005 after three years of marriage. 'I'm still on good terms with Shawn and I look back on our time together with nothing but fondness,' says Ashley.
「在年幼時期，我的移動性還很好。」她補充說：「但我並不快樂，在學校我跟其他的小孩不一樣，我並沒有朋友，我很害羞，總是一個人，並沒有很多正常的生活。」隨著年紀增長，病徵開始出現，Ashley Kurpiel 的肌肉加速僵硬鈣化。「我感到身體逐漸僵硬。」她回想：「醫生告知我未來命運，我決定在太遲之前，盡全力體驗人生。」
她嫁給了從網路上認識的 Shawn，但在結婚三年後便離婚。「我跟他仍然保持良好的關係，過去在一起的時光讓我感覺到滿滿的愛。」
- Symptom (n.) 症狀
A fever is a symptom of illness. 發燒是生病的症狀。
- Stiffen (v.) 使僵硬
His joints had stiffened. 他的關節變得僵硬。
- Onset (n.) 開始 = beginning, commencement, start, opening
He went to see a doctor at the onset of a fever. 他開始發燒時便去看醫生了。
- Term (n.) 關係；友誼
We are in good terms with our neighbors. 我們和鄰居和睦相處。
- Fondness (n.) 喜愛；鍾愛
She has a fondness for red wine. 她喜愛紅葡萄酒。
Despite her happy memories, in May 2006, Ashley's life took a turn for the worse after she was involved in a serious car crash. Her leg locked into a bent position permanently in May 2007, and Ashley was fitted with a special platform shoe to help her maintain as much mobility as possible.
Since the setback, Ashley has been determined to do more with her life and so far, has learned to surf and completed a five kilometre course in a specially-adapted wheelchair in August last year.
'I've been blessed to meet so many truly amazing people, especially the Dalai Lama - that was a real honour,' said Ashley of the religious leader, whom she met in 2007.
'I feel so humble that so many people have taken an interest, and hopefully found some inspiration, in my life.'
6年前的一場車禍導致 Ashley Kurpiel 病情加劇，她的右腿永久僵化成彎曲姿勢，依靠特殊設計的鞋來輔助她的行動。
就算遭遇挫折，Ashley Kurpiel 不氣餒，立志在人生中體驗更多事，到目前為止，她不但學會衝浪，還在去年八月完成了五公里衝浪賽。
「我何其幸運能夠遇到如此多這麼棒的人，特別是達賴喇嘛，我感到好光榮。許多人從我的人生經歷獲益良多，並得到鼓舞啟發，我感到非常榮幸。」
- Bent (adj.) 彎曲的
- Permanently (adv.) 永久地
- Setback (n.) 挫折；失敗
- Blessed (adj.) 受祝福的
- Humble (adj.) 謙遜的；謙恭的
