A posthumously published account of the 21-year-old cystic fibrosis sufferer’s decision to undergo a lung transplant offers a memorable testament to her resilient spirit.
This finely wrought chronicle about choosing to live to the full in the face of death admirably balances the author’s fears and hopes. NPR Radio Diaries contributor Rothenberg is neither mawkishly self-pitying nor unrealistically optimistic as she reviews her life and the choices she faces. After she was diagnosed with cystic fibrosis and underwent surgery when she was three days old, she experienced countless operations, hospital stays, and ER visits. She saw fellow sufferers die young, and had no illusions about the disease; statistically, her midlife expectancy was 28. But at 19, the year the memoir begins, she is contemplating a lung transplant. A student at Brown, she swims, loves writing, and has numerous friends, but, as she notes, “here I am at college, and I can’t write about the future.” Her pancreas doesn’t function, she must take insulin, her lungs are congested, and she can’t have children. She’d be happy to have vacations that didn’t involve hospitalizations. As she mulls over whether she should undergo the 12-hour operation that will deter the disease’s progression, she admits fearing that it won’t work. Once decided on surgery, she writes in diary entries and e-mails about her feelings, activities, friends, and family as she waits for a suitable tissue match. The operation in July 2001 is brutal, and so is her recovery; she suffers bowel obstructions, pneumonia, and lymphoma as her body rejects the lungs. But despite the hospital stays, Rothenberg sees friends, goes back briefly to Brown, and is determined not to let “my health rule my life.” An epilogue written shortly before her death in March 2003 acknowledges that she’s experiencing acute rejection, and doesn’t know whether it is easier to live or die.
Moving for all the right reasons.