The author's older sister, Michelle, was diagnosed with cystic fibrosis alongside her at infancy. Both were not expected to survive beyond elementary school, yet they defied these odds. As the disease progressed into adulthood, they spent increasing amounts of time in the hospital. However, Michelle's final hospitalization marked a turning point.
Michelle was admitted to the ICU with severe respiratory distress. Her airways were blocked by thick mucus, and despite high oxygen levels, she struggled to breathe. Facing the possibility of needing a ventilator with a 50% survival chance, she expressed a need for her loved ones to accept her potential passing. Four days later, at age 35, two years shy of the life expectancy predicted in their childhood, Michelle died.
The author, Lisa Zaccaria, was haunted by unsaid words and unanswered questions, particularly a lingering guilt over a past unkind interaction. Years prior, when Michelle was preparing for sinus surgery, a common procedure for CF patients, Zaccaria had reacted with anger, telling her sister to "grow up." She later regretted this harshness, realizing her own fear of confronting her sister's vulnerability stemmed from her own anxieties about her health. Zaccaria, also living with CF and other medical complications, had spent much of her life consumed by fear and the expectation of an early death.
In the aftermath of Michelle's death, Zaccaria was going through her sister's belongings. In her desk, she found a neatly folded copy of Linda Ellis's poem "The Dash." The poem reflects on the dash between a birth date and death date on a tombstone, emphasizing the importance of how one lives during that time. This discovery profoundly impacted Zaccaria, leading her to realize she was "merely existing" rather than living.
This realization propelled Zaccaria to make significant changes. She took on new challenges, including parasailing, an activity that once would have been unimaginable due to her fears. She described the experience of soaring hundreds of feet above the water as a moment of calmness and a departure from her lifelong anxiety.
Zaccaria, now 48, reflects that 16 years after her sister's passing, she has embraced a life of adventure and bold choices. While acknowledging that individuals with CF still face health risks, she is committed to living without regret. She believes her sister's spirit accompanies her as she lives her life fully, honoring both her sister's memory and her own existence.