As a poet and writer myself I love to read a “backstory” – the story behind the story of an artist’s primary mode of expression. Like other reviewers I also came across this memoir through reading Nancy’s poetry on the Goodreads group page. Holding breath: a memoir of AIDS Wildfire Days is the story of how a creative writing graduate and aspiring poet, Nancy Bevilaqua was in search of a job, answered an advert to become an AIDS caseworker – and a year later crossed the professional boundaries assigned to her by falling in love with one of her dying clients, a 41 year old heroin addict called David. For eight months she secretly lived with him in his Lower East Side apartment, caring for him and waiting with him for the inevitable end.
Before his death, David had asked Nancy to write a book about him. Twenty-two years later, after going through an unexpected and very painful period of something she learned was called “disenfranchised grief”, she finally published Holding Breath. Like its title, this memoir is breath-taking in its honesty, its tender depiction of a forbidden love and the heart-wrenching grief of losing that love. Nancy is not only a gifted wordsmith, but her story gripped me from beginning to end.
There are some who would criticise such a personal tell-all as being indulgent, or merely cathartic – Nancy’s extreme honesty elevates the book from being anything like that and for me the story is an important one in its wider sphere of application for two reasons. First, it gives a poignant insight into a particular slice of socio-economic and cultural history – the “wildfire days” of AIDS. I live today in an African country where AIDS is still stigmatised, but it is nevertheless, in present times a daily reality (I would guess that almost everyone I know knows someone with AIDS at some level of family, friend or mere acquaintance) and there are many, many people living with HIV as well as dying from AIDS-related illnesses (no one here actually dies of “AIDS”!) And so I found it fascinating to re-live Nancy’s experience of the early days of AIDS being this rare, terrifying and misunderstood disease that was, in its Western context, the fate only of homosexuals and drug addicts, not of “normal” family people. The very fact that someone like Nancy, with no professional training in Social Work and no medical background was employed at all in this role gives a clue to how stigmatised this group was at the time – and the fact that she managed to keep this relationship a secret reveals how little the state cared about such people or had any idea of what to do with them.
Second, Nancy’s story of ‘breaking the rules’ challenges many of the neat, educated boxes that are drawn around medical and therapeutic ethical issues. Yes, boundaries are necessary and helpful but it is not always easy to draw the line between what is “professional” and what is “humane” – and if we dare to be as honest as Nancy, what is simple “human”. The dilemma created by Nancy’s love for her client, which was probably a rare “aberration” in 1980s New York, is one that is played out daily in sub-Saharan Africa where aid-workers break laws and even their own protocols for the love of the people they are trying to help. The line between rescuing and helping is very thin – and sometimes we wonder whether “tough love” is indeed love at all? There is something about love which is in its very nature a breaking of boundaries, for good or ill.
Because this was a relationship beyond the rules, it became a hidden and lonely place and something that led to “disenfranchised grief” – a term used to describe the grief that is felt by those who have no socially accepted role in the life of the departed and therefore no place to mourn publicly or receive the comfort and support of the society around them.
For me this raises even deeper issues and connects Nancy’s experience to the deepest dreams and desires that we all wrestle with.
This is not a comfortable read but one which has the value of challenging our humanity. It is a gripping story and one which trumpets the belief that every life has value: well-worth reading.