SURVIVING SICKLE CELL

A sickle cell anemia sufferer recounts her life.

Johnson writes that as she approached her 17th birthday in 1990, she had a feeling of foreboding. It marked the year that doctors had said that she would die, if she hadn’t already, from sickle cell anemia, which they diagnosed when she was 5. Now in her 40s, she presents a memoir of decades of living with the hereditary blood disorder—one for which there’s no known cure. During her childhood, she says, she underwent traumatic blood tests that involved the use of straitjackets. Most often, she underwent outpatient treatment, but she was sometimes hospitalized for as long as six months. Nonetheless, she has an uplifting message for her readers, as she asserts that she learned to live a relatively “normal” life, and so can others with the disease. The key, she writes, is to embrace her outlook: “I do not have sickle cell anemia, sickle cell anemia has me.” She does note, however, that during acute episodes of the disease, such affirmations don’t work. Johnson says that, at its worst, sickle cell anemia can feel “like someone stabbing me all over my body with a large kitchen knife a million times.” Episodes such as these damaged her emotional health and personal relationships, she says, and her prose is often tinged with a feeling of grief; she experienced multiple miscarriages due to the disease’s effects, and she recounts these events and their aftermath in painful detail. These scenes are emotionally charged and vividly described, and they may be difficult for sensitive readers. There are moments of jubilation in the text, however; for instance, after she describes a difficult romantic relationship, she joyfully tells of how she finally gave birth to a healthy son. She also inspiringly writes about how she earned bachelor’s and master’s degrees in psychology and enrolled in a doctoral program on leadership. She later earned a teaching certificate, and currently has plans to become a school psychologist—a heartening path for someone who’s managed to beat daunting odds.

An inspiring, if sometimes harrowing, remembrance.