“The stereotype of the PWD (person with a disability) as asexual or as sexually unappealing is fairly clobbered.” So says Jennifer Clare Burke regarding the narrator she created in A Life Less Convenient. The unnamed narrator’s story unfolds across dozens of letters. She wants to make her relationship work with D, but her own failing body proves to be the most obsessive and selfish lover in her life.
Jennifer Clare Burke has created beauty in describing the life of a person with chronic illness within the letters of A Life Less Convenient. She creates this beauty from personal experience. The face of chronic illness was, in her younger days, not her face.
“In my health-ish years, I imagined someone who was…not me. The face of chronic illness had to be an old person. Or someone in a wheelchair who didn’t get out except to the supermarket. Or someone with visible badges of illness: a scar, an oxygen tank a limp. I hardly imagined that the face would by my face - the face of someone who continues to work regularly in different industries, to produce, to be valued as a breadwinner, to be highly regarded by my friends.”
Perhaps the biggest difference between a pre- and post-diagnosis life for Burke is sex. “It never occurred to me [before my diagnosis] that the chronically ill would desire a sex life let alone be capable of having one, albeit on the terms of their ability. Of my ability, I should say.”
The art of managing a sex life in between bouts of vomiting and pain and hospital visits comes to life in A Life Less Convenient. Typical romantic markers of eating meals prepared by a lover are balanced against real physical - and mostly negative - consequences experienced by the narrator. Dashing across a train depot parking lot don’t exist in the narrator’s world, where a tumble might result in a significant hospitalization.
What does love become for D, when the narrator forsakes D’s bed for the comfort of home, more than once? How can love survive when the narrator feels compelled to manage not only her illness, but monitor her partner’s reactions to her illness, concerned that D is becoming too overwhelmed by the narrator’s illnesses?
There is a dance of revealing and hiding within their relationship, a dance familiar to Burke. “I didn’t realize until illness struck that much of chronic illness is invisible to others: often, you can’t see another’s pain or limits because the person is like me - actively seeking to make sure I can blend in with the Normals, trying not to look like someone who should be rejected for the job, wanting to look as regular as the rest so as not to be pitied.”
(I will posting a series of interviews with Jennifer Clare Burke over the next several days. If you have not yet done so, please read the fantastic reviews of this novel that shares the joys and pains of sex, love and chronic illness.)