Life Expectancy
Life Expectancy
Reading medical journal articles clinically, impartially, notebook open, printer on, highlighter at the ready. Symptoms, confirmation, progression, prognosis; she made a file folder for them all. She read firsthand accounts about coping with the disease, about living with it. She learned that any children she might have had a 50% chance of contracting it from her. Would she have children? Did she have time to have children? She was sixteen, nearly seventeen. She’s always assumed she’d have children, but somehow thought she’d make that decision much, much later, like normal people, if she was ever in a relationship.
She read for hours, on a mission, single-minded. A ticking time bomb with a focused desperation for instructions on how to diffuse herself. Printing off information, neatly labeling file folders; it got so that she could read the most horrible statistics, the most jarring first-person accounts of living with the disease, without even flinching. She worked the rest of the night.
One last file folder. Disease: Cure. It was empty. So empty, so empty.
She got up stiffly, flipped through a photo album and selected one of the only pictures she liked of herself. Her, earlier this year, holding a therapy puppy they’d brought to Room 107. The picture was snapped just as the dog reached in to lick her face. She’d squirmed with one eye squinted shut, and she was laughing delightedly. The picture was pure happiness.
She put the picture in the folder. She stroked out Disease: Cure. There was no cure. Any developments there had been were about managing the disease. There was no room for pretending. She wrote The Future instead. Because, no lie, she still had some kind of future ahead of her.
I’m not going down without a fight, she thought.
She turned her mind to the desperately urgent business of living.
Sophie St. John is a high school student in her school’s Opportunity Class. As a class project, their teacher decides the group should put on a play, and she chooses Abomination, an adaptation of a famous novel by Sophie’s grandmother. Sophie begins to wonder about the story behind her grandmother’s novel and does some research into her family as part of her homework for her Legal Studies class. This confirms that she has a serious genetic disease, and Sophie realizes that she has always wondered why she felt different from her peers. The discovery leads her to major philosophical questions. How do you plan your life and set goals for yourself when you have no idea how long you may have any kind of quality of life?
Readers learn about Sophie’s condition along with her during the novel. In the beginning, she seems like a very moody young woman, prone to anger and often acting out either verbally or physically. She has little support other than a sympathetic classroom support worker. Sophie’s parents are academics and aloof, content with their respective ivory towers of literary academia for her mother and the law office for her dad. Mariam, the author of Abomination, is a completely dislikeable character who offered no parenting for her own daughter and who has even less interest in her granddaughter. While there are other students in Sophie’s class, they are dealing with their own sets of disabilities and haven’t the knowledge or understanding to really empathize with their classmate.
Alison Hughes takes on several difficult questions within the story. She ponders what constitutes justice and whether the legal system we depend on is truly just at its core. Readers see characters with various mental and physical disabilities, and Hughes upholds the viewpoint that absolutely everyone has value for society. This despite the fact that Sophie’s parents launched a lawsuit when she was born, citing the difficulty of raising a child with a serious disease and potentially reduced life expectancy.
Where Hughes – and Sophie – shine is their positive outlook regarding a terminal illness. Sophie has to do some soul-searching to know what she really wants in life. She ponders what activities may, in fact, waste the precious years she has ahead of her and alternatively what may give her the most joy and satisfaction. This moody, feisty, clumsy character may prod her young adult readers into looking at their own lives, perhaps realizing just how precious their time is and how important it is for all of us to live our lives fully each and every day.
Ann Ketcheson is a retired teacher-librarian and high school teacher of English and French who lives in Ottawa, Ontario.