Nineties journalism darling Charlotte Raven who had an affair with Julie Burchill tells how Huntington’s disease has caused her to ‘lose her identity’ and led to the end of her marriage in new memoir
Journalist Charlotte Raven has spoken about her experience of living with Huntington’s disease in a new memoir.
掠夺, a darling of Nineties journalism known for her provocative views and blistering writing, was diagnosed 15 几年前, after discovering her father had the inherited condition on the morning of the 7/7 bombings.
Huntington’s disease (HD) is a degenerative neurological condition, inherited from a person’s parents, that stops parts of the brain working properly over time.
Symptoms vary but can include difficulty concentrating and memory lapses; 四肢和身体不自主的抽搐或烦躁的运动; 情绪波动和性格变化; 吞咽问题, 说话和呼吸; and difficulty moving. Symptoms typically first present between 35 和 45.
‘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 监护人.
Journalist Charlotte Raven, known for her provocative views and affair with Julie Burchill (一起画在 1995), was diagnosed 15 几年前, after discovering her father had the inherited condition on the morning of the 7/7 bombings
‘You lose your identity, and some of your humanity, while remaining aware enough to keep a tally of every loss…
'为了我, it started with small, unexplained absences: car keys, 眼镜, a million lighters, 鞋, 衣服. Then I lost the world, city by city. Familiar places became a scary tangle of streets, so I stayed in the house.
‘Then the car itself started to go missing: when we stopped at services, I could never find my way back to it.
‘Bigger human losses followed. I lost my sexuality. Friends stopped remembering to visit me. And then I began to lose my own past: as my short- and long-term memory were affected by HD, the story of my life receded into the distance and became increasingly inaccessible to me.’
The title of the book comes from Raven’s role as ‘Patient 1’ in a pioneering drug trial examining the effects of a drug, later called tominersen, that could lower the production of the mutant huntingtin protein in the spinal fluid.
The trial was ultimately aborted in March this year.
现在, 15 years on from testing positive with the Huntington’s condition, 掠夺, is at a stage where she needs to be spoon-fed by carers and has problems with swallowing, 根据 时代.
Journalist Charlotte Raven (剩下) has spoken about her experience of living with Huntington’s disease in a new memoir, Forgetting And Finding Myself (对)
But on top of her ‘daily tally of loses’ is the end of her marriage to Tom Sheahan, a film director.
Sheahan and Raven were introduced at a party in Notting Hill in 2002 and went on to have daughter Anna, 17, and son John, who was born two years after Raven’s diagnosis, after much consideration by the couple.
Memory lapses, 情绪波动和性格变化: The slow deterioration of Huntington’s disease
亨廷顿病是一种随着时间的推移会停止部分大脑正常工作的病症. 传了 (遗传) 来自一个人的父母.
随着时间的推移，它会逐渐恶化，并且通常在长达一段时间后是致命的 20 年份.
症状通常始于 30 至 50 岁, 但可以更早或更晚开始.
亨廷顿病的症状可能包括: 难以集中注意力和记忆力衰退; 萧条; 跌跌撞撞; 四肢和身体不自主的抽搐或烦躁的运动; 情绪波动和性格变化; 吞咽问题, 说话和呼吸; 移动困难.
病情后期需要全职护理. 这通常是致命的 15 至 20 症状出现多年后.
1 在 2 (50%) 他们的每个孩子都有机会患上这种疾病——受影响的孩子也能够将基因传递给他们拥有的任何孩子
非常偶尔, 在您的家族中没有病史的情况下，有可能患上亨廷顿舞蹈病. 但这通常只是因为您的父母之一从未被诊断出患有此病.
‘It took us a long time to decide whether to have another child, knowing they would have a 50 per cent chance of inheriting the gene mutation,’ writes Raven.
‘But ultimately I didn’t want Anna to be an only child, coping with weird me and having no one to play with.’
随着时间的推移, Huntington’s took its toll 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 reason to believe I was prematurely unempathic. 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 now lives with Tom down the road from Raven’s townhouse in Kentish Town, 北伦敦, but comes over every day after school while 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’s very difficult to say anything other than it’s probably the right thing for both people. It is a real struggle to care for a person and love them when they are not really the person you met and fell in love with.’
Raven’s colourful personal life made headlines in the Nineties when she embarked on a six-month affair with renowned controversialist Julie Burchill.
Burchill at the time was married to her second husband, Cosmo Landesman, whom she ultimately left for Raven. Together Raven and Landesman had co-founded the high/low pop culture magazine Modern Review with the journalist Toby Young.
Their lives remain entwined today. 在 2004 Burchill married Raven’s brother Daniel, 13 大三.
掠夺, who describes herself as at one point being a ‘narcissist without kindness or empathy,’ 根据《泰晤士报》, spent the Nineties ‘swanning around London’ and ‘taking drugs’. She still takes MDMA today.
Despite researching Dignitas at various points, Charlotte continues to look towards the future and credits her children with helping to drive her forward.
‘Every day John comes back and we get an infusion of joy, because he loves his school so much and he is an amazing character,’ she told The Times.
‘Every day it just feels as if the bolster is being built to reinforce me for a future that is better than I could have expected.
‘I am looking forward. I have the possibility of being myself again, which feels like a prize that I have won.’
Patient 1: Forgetting and Finding Myself by Charlotte Raven is published by Jonathan Cape on Thursday at £14.99