Selling your soul to the devil: an autoethnography of pain, pleasure and the quest for a child

Abstract

In this article I present an autoethnography in the form of a quest narrative linked as a self‐reflexive text to my continuing research of children and adults with spina bifida. My story centers on the themes of chronic illness, pain and sexuality, highlighting gaps in the literature related to these topics. I narrate my story as a manifesto for women with physical impairments to break their silence and talk about their sexuality. I recommend autoethnography as a method of understanding disability as embodied.

Faustus: Now tell me, what says Lucifer thy lord?

Mephistopheles: That I shall wait on Faustus whilst he lives,

  So he will buy my service with his soul.

(Christopher Marlowe, Dr Faustus)

Notes

∗ Department of Occupational Science and Occupational Therapy, University of Southern California, 1540 Alcazar St CHP‐133, Los Angeles, California 90089‐9003, USA. Email: aneville@ usc.edu

Arthur Frank (1995), a sociologist, identified three types of illness narratives. The first, restitution narratives, tell of health, illness and a return to health. Restitution stories fail ‘when the person is dying or when impairment will remain chronic’ (p. 94). The second type, chaos narratives, ‘… imagines life never getting better’ (p. 97). Chaos stories stand in opposition to restitution. Quest stories, the third type, ‘… meet suffering head on; they accept illness and seek to use it’ (p. 115). In reality, illness stories include all three narrative types ‘… like patterns in a kaleidoscope’ (p. 76).

Spina bifida, a birth defect that occurs when the spinal cord fails to fuse during the first month of fetal development, occurs in one out of every 1000 births each year in the United States (Kinsman & Doehring, 1996; Lary & Edmonds, 1996). A person's limitation can be quite variable depending on the extent of the damage to the spinal cord. For example, some children have lower extremity paralysis and use wheelchairs, while others, like myself, can walk unassisted. Bowel and bladder continence can be problematic, but new technologies have enabled children to become independent in managing these issues.

Only recently have studies investigated the incidence of sexual dysfunction in women taking antidepressants. Researchers now report the prevalence of sexual dysfunction in those taking Paxil to be as high as 65% (includes both men and women). Specifically, anorgasmia or no ejaculation was observed in 48% (includes both men and women) of individuals who had a sexual dysfunction while taking Paxil (Montejo‐Gonzalez et al., 1997). Packaging inserts that accompany Paxil continue to document the incidence of anorgasmia in women as occurring in between 2 and 9% of cases (GlaxoSmith Kline, 2002).

A reservoir of intestine is created and hooked up to the ureters. The urine then drains into a bag taped to the outside of the abdomen.

For example, male orgasm trumps female orgasm as evidenced by the development of sildenefil (Viagra) and its widespread distribution for treating male erectile dysfunction. Physicians diagnose women's sexual complaints as psychiatric disorders. To date, the FDA has not yet approved Viagra for use with women, although a number of studies point to its efficacy (Modelska & Cummings, 2003).

Additional information

Notes on contributors

Ann Neville‐Jan ∗

∗ Department of Occupational Science and Occupational Therapy, University of Southern California, 1540 Alcazar St CHP‐133, Los Angeles, California 90089‐9003, USA. Email: aneville@ usc.edu