Academic journal article The Oral History Review

The Struggle to Breathe: Living at Life Expectancy with Cystic Fibrosis

Academic journal article The Oral History Review

The Struggle to Breathe: Living at Life Expectancy with Cystic Fibrosis

Article excerpt

Abstract The first sizeable cohort of people living with cystic fibrosis (CF) has now reached adulthood. Gradual improvements in the diagnosis and treatment of the disease have increased life expectancy to approximately 32 years. Members of this cohort have lived all their lives near, at, or slightly beyond life expectancy. The authors tell the story of Lori Morris-Hughes, a 36-year old who balances the demands of work and family life with life-long terminal illness. Whereas many accounts of medical advancement write the lived experiences of the ill out of history, Morris-Hughes's illness narrative provides an account of the ways in which the temporal and social conditions of existence are problematic for those who live during times of increased life expectancy. Oral history is a particularly appropriate method of research in the field of illness narrative.

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It is through our bodies that we experience and come to know the realities of our worlds.

SUSAN M. DIGIACOMO

The epigraph on the Cystic Fibrosis Foundation (CFF) homepage says that the Foundation is "adding tomorrows every day." (1) The phrase speaks to the ways in which recent medical research (funded in significant part by the Foundation) and recent improvements in the treatment of cystic fibrosis (CF) have gradually increased the life expectancy of those who have the disease. Currently, life expectancy for those with this genetic lung disease is a little more than 32 years. Though this is less than half the life expectancy of adults living in the United States and other similarly industrialized nations, it is a dramatic improvement over what it was for those with CF just decades ago. Fifty years ago, for example, life expectancy for those with cystic fibrosis was less than two years. (2)

The improvements in the treatment of CF that have enabled this increased life expectancy are of course to be applauded. However, on neither the CFF web page nor in most accounts of the improvements in the treatment of CF does one find descriptions of what it is like to live life in an era when one's tomorrows are being added every day. Indeed, it is worth noting that more than 40% of all people living with CF in the United States are now over the age of 18, and although the CFF publicizes its role in the improvements to life expectancy that have enabled this demographic shift, there are no adults portrayed on the home page of the CFF website. There are only images of smiling children. One imagines that this is done for fundraising/ development purposes. Images of children tend to pull at the heart and purse strings in ways that pictures of adults do not. However, such imagery can only contribute to the perception that CF remains a childhood disease, making it all the more difficult for others to understand the issues confronting adults with the disease and for those adults with CF to live their lives. (3) How does one go about living when one always lives one's life at or beyond life expectancy? Indeed, for those people with CF who live beyond age 32, what is it like to be alive when you are expected to be dead? What is life like for adults living with cystic fibrosis?

In October 2000, 36-year-old Lori Morris-Hughes addressed these and other questions in an oral history interview conducted in her room in The Johns Hopkins Hospital in Baltimore, Mary land. (4) Lori has CF and when she was born in 1964, life expectancy for those with CF was about 12 years. By the time she reached that age in 1976, expectancy had increased to just over 20. When she turned 20 in 1984 it was up to about 25. By the time she got to age 25, life expectancy was 28 years. Thirty-six years of age at the time of our interview, Lori was four years beyond life expectancy. She has lived her entire life near, at, or beyond the age at which she was expected to be dead. Though she is a relatively young woman, she is among the oldest people living with CF. …

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