Charlotte Raven

This is a short confessional memoir by a woman living with a hereditary degenerative disease. It feels like a very personal book, sometimes uncomfortably so.

Charlotte Raven was in her mid 30s, married with a one year old daughter, when she was told that her father had been diagnosed with Huntington's disease, and that although this is a rare condition, it is hereditary, and that there is currently no real cure or medications which impact on the disease's severity/progress and slow the effects, After long consideration, Raven was tested and found that she was carrying the gene. Her father Morph only became really ill in his 60s, but apparently normal onset is between 35 and 55, and Raven has indeed been unwell since her 40s.

The memoir doesn't actually contain a lot of the gory details of the humiliations of the illness and care needs, as much as the impact on Raven's behaviour and relationships, especially those with her (ex) husband and two children (now teenagers). It does include an account of seeking a place on a medical trial, one with far more people hoping to be included than spaces. And there is an afterword from the doctor who got her on to that trial and faced further difficult truths with her.

I knew Charlotte Raven slightly at university and had followed her career as a media person, including stints working on a literary journal, as a controversialist Guardian columnist and an attempt to relaunch a feminist magazine, Spare Rib, with curiosity. This also included some weird scandals. Wisely, though, Charlotte Raven has chosen not really to write about these people, and I think that may be for complicated diplomatic reasons, but also, the focus is about how she learns to live with the illness and its impact on all aspects of her life and the people who are really close to her. She is quite harsh on her former self, her behaviour and demands on those close to her.

A very personal, thoughtful and thought provoking memoir about . This was published a year ago and I don't know whether there have been any developments since.… (más)