Patient 1 by Charlotte Raven review – life with the ‘mourning’ illness
“If you can remember the 90s, you weren’t really there,” writes Charlotte Raven in her memoir, Patient 1: Forgetting andFindingMyself. “I remember so little of it that I must have been more there than practically anyone, Liam Gallagher excepted.” For those of us trying to get a foot in the door of media London in the late 90s, Raven and her friends at Modern Review were its undisputed aristocracy. She wrote a provocative column for the Guardian, courting outrage long before clickbait was heard of. She had a high-profile relationship with Julie Burchill (“I chucked her out but then she married my brother, so I’ve never really got rid of her,” she says). She rubbed shoulders with taste-makers at the intersection of politics and pop culture during the heyday of print journalism, but Raven, now in her early 50s, is not reminiscing fondly about that life so much as mining it for clues to her identity, as that threatens to slip from her grasp. “If my memory is unreliable, how can I find my way back to my biography?” she asks.
This is a question faced by any memoirist, but in Raven’s case it is more urgent and literal. In her mid-30s, she was found to have the gene for Huntington’s disease, an inherited degenerative illness from which her father and grandmother also suffered. There is no cure: “The day I found out how I was going to die began innocently enough,” in her memorable phrase. One of the cruellest aspects of the disease is the gradual nature of the sufferer’s decline. “Someone once described HD as an illness of mourning, which seems very apt. You lose your identity, and some of your humanity, while remaining aware enough to keep a tally of every loss.”
She began keeping a tally of her illness in 2017 in the form of a blog and discovered a community glad to hear someone articulating their experience. Huntington’s is relatively rare, with only 6,000 people living with it in the UK and as a result it can be difficult to find support even among medical professionals. To turn the scattered thoughts of a series of blog posts into a coherent book she has enlisted the help of her brother Dan as editor and Dr Ed Wild, a Huntington’s specialist. But the result feels like an authentic representation of Raven’s voice through the prism of her illness. If it reads as fragmentary and disjointed at times, well, that’s because it is. There is no criticism you can make of the book that she has not already pre-empted: “I wanted this book to be an accurate record of what it is like to exist with HD and to feel your brain and personality crumble,” she writes. “If it’s exasperating to read this, imagine what it is like for me to live it.”
But, in fact, the book is not exasperating in the slightest. It is insightful, frank and often moving; Raven chronicles not just the physical and cognitive aspects of her experience, but the effect of her illness on the people closest to her. She examines with unflinching honesty the disintegration of her marriage, chronicling her own failings as a partner and resisting the urge to blame them on the symptoms of Huntington’s. One distressing aspect of the disease is the way it erodes the mental flexibility required for empathy on the part of the sufferer. “People with Huntington’s disease may sometimes seem self-centred, uncaring and thoughtless,” Raven writes, but she is also clear eyed enough to acknowledge that she often displayed these traits in her younger years and especially in her relationship with her husband, Tom, long before she became symptomatic. “I just wasn’t a very nice person,” she concludes regretfully.
In the introduction, she expresses a wish that this should not turn into a misery memoir. Though there is an underlying note of deep sadness, more often she writes with humour, a dose of self-mockery and no small amount of courage. “No one has triumphed over personal adversity,” she writes in the epilogue, congratulating herself on avoiding the misery memoir trap. “No one has learned a lesson. No one has learned anything at all.” The failure of a high-profile drug trial (in which she was designated the titular “patient 1”) robs her of the happy ending that would have been a commercial gift to a book like this, but that is precisely the point: life doesn’t usually provide desirably neat resolutions. And it’s not true that nothing has been learned; it’s clear to the reader that she has acquired hard-won self-knowledge, patience and, ironically, as she points out, a greater degree of empathy.
• Patient 1: Forgetting and Finding Myself by Charlotte Raven is published by Jonathan Cape (£14.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply
Raven chronicles not just the physical and cognitive aspects of her experience, but the effect of her illness on those closest to her