Charlotte Raven, a journalist has shared her experiences with Huntington’s disease in a new memoir.
Raven, a beloved Nineties journalist known for her provocative views, blistering writing and provocative writing, was diagnosed with the condition 15 years ago after her father was diagnosed with the inherited condition.
Huntington’s disease (HD), a degenerative neurological condition that affects parts of the brain, is passed down from parents.
Symptoms vary but can include difficulty concentrating and memory lapses; involuntary jerking or fidgety movements of the limbs and body; mood swings and personality changes; problems swallowing, speaking and breathing; and difficulty moving. Symptoms usually present between 35-45 years of age.
‘Someone once described HD as an illness of mourning, which seems very apt,’ Raven writes in Patient 1: Forgetting and Finding Myself, as featured in the Guardian.
After discovering that her father had the inherited condition, Charlotte Raven, a journalist, was diagnosed with the condition 15 years ago.
“You lose your identity and some aspects of your humanity, but you are still aware enough to keep a running tally of all your losses…
“It started with small, unexplained absences like car keys, glasses and a million lighters. Shoes, clothes, and shoes were the first. Then, I lost the whole world, one city at a time. I decided to stay in my house because familiar places became a terrifying maze of streets.
“The car started to disappear. I couldn’t find my way back to it when we stopped at services.
‘Bigger human losses followed. I lost my sexuality. Friends stopped remembering how to visit me. I started to lose my own life: as HD affected my short-term and longer-term memory, the story of me became more distant and less accessible to me.
Raven was ‘Patient 1″ in a pioneering drug trial that examined the effects of a new drug. The title of this book is a result of Raven’s role. Tominersen was a drug that could lower the production mutant huntingtin protein from the spinal fluid.
The trial was ended in March 2012.
Now, 15 years on from testing positive with the Huntington’s condition, Raven, is at a stage where she needs to be spoon-fed by carers and has problems with swallowing, according to The Times.
Charlotte Raven, a journalist, has shared her experiences with Huntington’s Disease in Forgetting and Finding Myself (right).
Her ‘daily loss count’ includes her marriage to Tom Sheahan (a film director).
Raven and Sheahan were first introduced at a party held in Notting Hill, in 2002. They went on to have daughter Anna (17 years old) and son John (18 years after Raven’s diagnosis). This was after much consideration and planning by the couple.
Raven writes, “It took us a long while to decide whether we wanted to have another child. Knowing that they would have a 50% chance to inherit the gene mutation,”
‘But ultimately I didn’t want Anna to be an only child, coping with weird me and having no one to play with.’
Huntington’s took its toll over the years on the marriage.
Raven writes: ‘People with Huntington’s disease may sometimes seem uncaring and thoughtless… In these situations, the person with HD is not being deliberately awkward, wilful or unkind – their apparent self-centredness is a consequence of the loss of mental flexibility associated with the disease.
“Tom has good reasons to believe that I was precociously inempathetic.” Our relationship wasn’t loving or collaborative in the first place, so there were few reserves of goodwill to draw on when HD came to call… My lack of empathy delivered a mortal blow to my marriage.’
John lives now with Tom just down the street from Raven’s Kentish Town townhouse, north London. Anna, who is studying for her A levels, lives with her mother.
Professor Ed Wild, Raven’s doctor and a consultant neurologist running a research team at the University College London Huntington’s Disease Centre, who wrote the afterward to Raven’s book, explained in The Times that HD is ‘a burden that is almost impossible to bear and many, many marriages end’.
“And when they do, it is very difficult to say anything but it’s probably right for both of them. It can be hard to care for someone and love them when they aren’t the person you fell in love with.
Raven’s colorful personal story was highlighted in the Nineties when she had a six month affair with Julie Burchill, a renowned controversialist.
Burchill was married to Cosmo Landesman at the time, who she later left for Raven. Raven and Landesman co-founded Modern Review, a high/low magazine about pop culture with Toby Young.
Their lives are still intertwined today. Burchill, who was 13 years younger than Raven, married Daniel in 2004.
Raven, who described herself as a narcissist without kindness and empathy at one point, according to The Times, spent her Nineties’swanning about London’ and consuming drugs. She still takes MDMA today.
Charlotte has researched Dignitas many times, but she continues to look to the future and credits her children for helping her get there.
She told The Times that John always comes back every day and brings us joy because he loves his school so deeply and is such a great character.
“Everyday it just feels like the bolster is being constructed to support me for a better future than I could have imagined.
‘I am looking forward. I have the potential to be me again, which feels like I have won a prize.
Patient 1: Forgetting and Finding Myself by Charlotte Raven is published by Jonathan Cape on Thursday at £14.99