Katie became their full-time job. Whenever she was in the hospital, one of them was nearly always with her, day and night. When she wasn't in the hospital, their days were filled with doctor's appointments, rehab sessions, and the search, always, for something new that could help her. Acupuncture. Massage. A chiropractor. A personal trainer. A nutritionist. Music therapy. Spiritual and healing services. They googled for information, posted updates for friends on a Facebook page, and used a dry-erase calendar to track their schedule.
照顧凱蒂成了他們的全職工作。每當她住院的時候，家人中需要有人日夜陪伴著她。當她不在醫院的時候，他們的日子里充滿了醫生的預約、康復治療，以及總是在尋找新的可以幫助她的東西。針灸、按摩、脊椎指壓治療、私人教練、營養師、音樂療法、精神和治療服務。他們在谷歌上搜索信息，在Facebook頁面上發布朋友的更新信息，并使用可擦日歷來跟蹤他們的日程安排。
Two years after Katie arrived at the clinic, I met her and her parents in the waiting area of the plastic surgery department, a large, sunny room that marks one of the many odd crossroads of modern American medicine. Here, patients suffering significant facial disfigurement and scarring wait for their appointments alongside buffed and gleaming clients who come in for Botox injections and face-lift consultations.
在凱蒂來到診所兩年后，我在整形外科的候診室見到了她及其父母。整形外科是個陽光充足的大房間，代表著現代美國醫學眾多奇怪的分支。在這里，面部嚴重毀容和瘢痕病人在等待他們的預約，與他們一起來的還有肉毒桿菌注射和整容咨詢的光鮮客戶。
Katie arrived in a wheelchair pushed by her father. She wore a surgical mask over the lower half of her face and a brightly colored head scarf. She looked small and vulnerable, though I soon learned she wasn't. She took my hand and said a cheerful hello, and as we chatted, I saw that in this space, at least, she seemed entirely comfortable. Maybe that's because she didn't stand out. In one way or another, everyone there was dissatisfied with his or her face.
凱蒂坐著父親推的輪椅來了。她下半部臉被外科口罩遮住，同時戴著色彩鮮艷的頭巾。凱蒂看起來又小又脆弱，盡管我很快就知道她并非看起來那樣。她拉著我的手，愉快地跟我打了個招呼。當我們聊天的時候，我發現至少在這個空間里，她看起來很舒服，也許這是因為她并未顯得獨立特行。無論如何，這里的每個人都對自己的臉感覺不滿意。
When I visited the family at the Big Mac House, as Robb calls it, Katie was almost always in a recliner, tilted back and covered in fleece blankets. Alesia tended to her nonstop, dispensing medications, bringing her water in a child's sippy cup, rubbing her hands and feet with scented lotions, and heating slippers and eye masks in the microwave.
當我去巨無霸漢堡店拜訪這家人時，凱蒂幾乎總是躺在躺椅上，向后傾斜，身上蓋著羊毛毯子。阿萊西亞不停地給她配藥，把水倒進孩子的吸管杯里，用有香味的洗液揉手和腳，用微波爐加熱拖鞋和眼罩。
Katie usually listened passively to the conversation but sometimes interjected a comment or a joke, giving me a glimpse of the funny Katie her family frequently described. One day we were talking about religion, which is central to their lives. What happened to Katie shook their faith a bit but didn't kill it. It also didn't kill their marriage -- a common repercussion when a child dies or has overwhelming medical problems. Where Alesia is emotional, Robb tends toward intellectual discourse. He has a bushy beard that enhances his sagelike manner, and when Alesia is fired up, he gazes at her with a tender smile.
凱蒂通常被動地聽著談話，但有時會插話或開個玩笑，讓我一瞥她家人經常描述的“有趣凱蒂”真容。有一天，我們開始談論宗教，這是他們生活的中心。發生在凱蒂身上的事動搖了他們的信念，但并沒有摧毀它。這也沒有扼殺他們的婚姻，孩子夭折或出現嚴重的醫療問題時，總會伴隨著婚姻崩潰。阿萊西亞的情緒容易激動，而羅柏則傾向于理智對話。他有著濃密的胡須，這增強了他的智者風度。當阿萊西亞生氣時，他會溫柔地微笑看著她。
評論
打印
