A husband’s account of his wife’s courageous battle with Lou Gehrig’s disease—and his joys and sorrows as her primary caregiver.
The inspiration for Lee’s debut memoir began when his wife, Terri, began extensively researching amyotrophic lateral sclerosis after her diagnosis with the disease. Lee met Terri in his native Jamaica in 1988, and the couple, both in their 30s, instantly hit it off. They married in 1990 and had two sons. Their family life was idyllic until Terri began experiencing a strange loss of coordination in her early 40s. Lee carefully maps the 12-year progression of Terri’s ALS—from her dropping things to using a walker to becoming wheelchair-bound. Against doctors’ advice, he refused to put her in a nursing facility. Lee was highly sensitive to his wife’s emotions, and he tried to make her feel attractive, even while he performed medical tasks. Lee also candidly reveals his failings, such as the times he made Terri wait for something she needed while he watched television, and the resulting regret as well as his recognition of his own extreme exhaustion. Throughout it all, his connection with his wife intensified: “It had gotten to the point where I would just know, somehow, exactly what she needed and when. I could literally look at her and feel that her left forearm needed to be rubbed, or that the spot on her head just above her ear needed to be scratched.” He movingly renders his bleakest moments, like the time he caught Terri online researching suicide, and his triumphs, such as helping her alleviate some symptoms with a healthy diet. Terri regained her ability to communicate when the ALS Association loaned her a free DynaVox Eyemax computer, which she also used to say her final goodbyes. The memoir moves quickly, and Lee’s prose is effective and unadorned: “To this day I can’t remember what she wore, or whether she sat or remained standing. I remember only her smile.” Those who are new to ALS may find a chapter on “Health Tips and Observations” helpful.
An affecting portrayal of caring for a terminally ill spouse.