Hello… I am Charlotte Raven.
I would like to introduce my children Anna and John, who are an incredible source of support and entertainment.
Anna is studying Politics and English and is happy to roast any tory peers at school.
John is training to be a dancer and dreams of being a choreographer. He couldn’t make it to Bologna because of a ballet exam.
If it wasn’t such a cliché I would like to communicate my journey to you.
I grew up in Brighton in the 1970s and 80s. My mother wanted to give me confidence but accidentally raised a narcissist bully. My father Murph was hard working but distant.
In my teenage years, I went from being a Mod who loved Northern Soul, to a Goth who loved hanging out in a nightclub called Subterfuge.
In the mid 80s, I thought there was going to be a revolution, as Margaret Thatcher was engaged in a battle with the coalminers. They were eventually defeated, and me and my friends cried at school when they made a dignified return to work.
I fantasised about working on a magazine called the Modern Review, which described itself as “low culture for highbrows”. I wrote what I hoped was an amusing letter to the editor.
I was thrilled when the editor wrote back inviting me to their offices, which turned out to be their front room. I worked there from 1992-94.
I got noticed by the right people, and was soon delighted to find myself descending the Titanic-like staircase of the Atlantic Bar and Grill, with Julie Burchill.
My memory is hazy, partly because of the HD but largely because of all the drugs.
Beautiful people in sharp suits and bodycon dresses were downing sea breezes, smoking and delivering killer lines.
If you can remember the 90s, you weren’t really there; I remember so little that I must have been there more than anyone.
Next I got my dream job as a columnist at The Guardian, and became a controversialist.
I was a provocateur for hire, and managed to offend everyone.
When people complained to the editor, the paper didn’t support me; I was hung out to dry on the letters page. I tried to be unrepentant but was secretly mortified.
My flat became party-central, until in 1994 I was carried out by men in white coats to The Priory – a five thousand pound-a-week institution filled with celebrities.
Apart from being ill I really enjoyed it there as I like institutions.
A mutual friend introduced me to Tom at a party. All the other men in my life had been dysfunctional, but Tom was both sane and interesting.
When we married in 2003 it was the finale of a long-running production of 90s excess.
Anna was born the following year in a water pool in the living room of our house.
When Anna arrived, I had been expecting to be the focus of attention, rather than the baby.
It took a couple of months to adjust to having someone whose needs took priority over mine. My narcissistic wound was slow to heal. Anna came slowly into view. Then I fell in love with her.
The day I found out how I was going to die began innocuously enough.
Tom had gone to work early, filming a documentary about the London Underground.
During breakfast, the landline rang. It was my dad’s old friend Eric.
He said there was something I should know: Murph had been diagnosed with Huntington’s disease.
I saw how an illness might explain some of the things I’d noticed about Murph. He was twitchy and fidgety, and there was a hesitancy to his stride.
So of course, I did the one thing you should never do : I googled Huntington’s.
Wikipedia made it sound like a mixture of Alzheimer’s and Parkinson’s, but worse than both.
Then there was the genetics. ‘The probability of each offspring inheriting an affected gene is 50 percent’.
So this might also happen to me or my brother, and if I had the gene, then my children would be at risk too.
“HD typically manifests between the ages of thirty-five and forty-five”. I was thirty-five.
I called Tom.
I was in tears as I explained what I’d learned, and then the phone went dead.
He had arrived at Edgware Road just after a bomb had been detonated on a train in the tunnel. It was the 7th of July 2005, and for the rest of the day he was caught up in the worst terror attack London had ever seen.
We had been knocked off-course. There was a sense that our lives had darkened around the edges.
When Tom came back into range, I was weeping with relief, but still unable to process the news.
Soon my father became properly ill, and we edged him to Queen Square Neurological hospital, where they confirmed the diagnosis.
The next nightmare to process was my own at-risk status, and whether to have the genetic test.
I wrote a list of pros and cons. There were always more cons than pros. I surprised myself when I decided I did want to know after all.
When I found out I had the gene, it was as if all the blinds had been closed.
Everything was darkening around me, with no one who could comfort me in the frame.
Someone once described HD as an illness of mourning. You lose your identity, and some of your humanity, while remaining aware enough to keep a tally of every loss.
For me, it started with small, unexplained absences: my car keys, a million lighters, clothes.
Then I lost the world, city by city. Familiar places became a scary tangle of streets, so I stayed in the house.
Bigger human losses followed. I lost my sexuality. Friends stopped remembering to visit me.
There was one gain: our son John, who was born on a lovely day in April.
It took us a long time to decide whether to have another child.
I didn’t want Anna to be an only child, coping with weird me, and having no one to play with.
Could we justify bringing another child into the world, knowing what was in store for them? We decided, perhaps irresponsibly, to procreate the old-fashioned way.
When I first met Ed in the HD clinic, we quickly developed a scientific and personal relationship.
He bore witness to me, without taking sides in my arguments with Tom, as I wanted him to.
It is hard to see why he chose a specialism where people are going to be angry with him, but I admired him.
I hated science at school.
I kept asking my teacher “What is the point of the periodic table?”
The only use I found for magnesium was to burn it in a satisfying fire hazard.
I found following HD research very difficult emotionally. Every bit of good news was followed by something bad that added to my suffering. I called this HDBuzzkill.
But I was enthusiastic to take part in any clinical trial.
I wanted to get on the Roche drug trial as soon as Ed mentioned it to me.
I pestered him about whether I was suitable for the trial, or heading back into my life. Ed says I am a very impatient patient.
Eventually he emailed to say, ‘It is overwhelmingly likely that you will get on this trial.’ And I did!
I was in a small add-on study called Gen-Peak, which offered open-label treatment with the huntingtin lowering drug.
I was admitted to hospital for a week.
At 11.43 on the second day, Ed gave me the first dose into my spine.
By a strange quirk of fortune, that was also my 50th birthday.
I felt shit, but in a way that was oddly familiar: it was another drug hangover, but this time from something that was meant to be in me. Ed was my dealer.
Later he gave me the drug packet that proved I was Patient 1.
I would sum up my experience as ‘intense and exhausting but worth it’.
In March 2021, in the middle of a covid lockdown, Ed rang me. When I asked him how he was, he said, ‘Shit – I’ve got something terrible to tell you.’
Roche had decided to stop treatments. The experimental therapy wasn’t working.
The world ended again; it felt exactly the same as the moment of my original diagnosis.
I’d been waking up every morning thinking about the drug. It was like being in love. Now that pinprick of light had been blacked out.
Now I can see it was still a step towards a cure, and I feel proud to have been part of it.
I’ve lived a fairly selfish life, so it seems oddly fitting that this last thing I did to save myself, might end up saving others instead.
Working on my memoir with Ed and my brother Dan has helped me connect more with the people around me.
I’ve finally been able to portray my family and friends as they really are.
Perhaps I do still have some empathy after all.
Lately I have become enamoured by the stars, and I’ve been telling people that if you go up into space, you go back in time. Which blew my mind.
It also blows my mind, that HD is such a rare disease, yet somehow attracts so many of the world’s brightest and best scientists. This is the most striking gift I can imagine.
Thank you to the researchers for what you do, and thank you for listening.