Until recently, I didn’t want to see anyone else with HD. Sometimes it was unavoidable. My six-monthly check ups at the National Hospital were difficult; the waiting room was full of people in wheelchairs in the late stages of the illness with stressed-looking carers or family members. I felt so sorry for them and sorrier for myself. This vision of my future was confronting, so I kept my eyes down, reading and re-reading the news pages of the Metro free-paper.
I’m not sure what has happened but I’m less scared now and more interested in fostering open communication with people like me: people who understand the challenges of living with HD and the momentous effort involved in keeping-on keeping-on. I want to share my experiences and hopefully learn from theirs. Few people have HD, and it feels foolish not to reach out to them. These days, in various ways, I have been connecting with the HD community. I’ve also been feeling more sociable. I’m still nervous of kitchen-table encounters because the rhythm and content of my conversations has changed, but the reward of connection outweighs the risk. I’ve never been good at telling anecdotes but I always liked talking about ideas with a cocktail in my hand. Yesterday, I’m ashamed to say, I forgot the word for woman-hating. I said ‘misanthrope’; then ‘The one that’s against women’.
At lunchtime on the second Thursday of every month, I go to a small but easy-to- locate café in Islington to meet other people living with HD. The group is convened by the North London branch of the Huntington’s Disease Association. It used to be held in a community centre but they put up the rent. It’s a bit cramped in the Corner Café and the number of people attending the meeting varies from month to month. It’s also a bit inhibiting to be in a public place when we are telling our stories. Last Thursday, there were five of us around the table; some familiar faces and a couple of new ones. The group is led by Graham, whose job it is to send endless reminders in advance of the meetings. He always gets there early in case someone else does. Graham’s wife died – I’m not sure when – but he has stayed in post. More than an administrator, he has a real talent for making us all feel comfortable, facilitating conversations that always feel meaningful because communication is hard won. Graham said his wife didn’t utter a word for years and he wasn’t sure if she was taking anything in. He talked to her, as we used to talk to my father, slightly self-consciously about the past and what their friends were up to. Every couple of days, he wheeled her around the garden they used to tend together. Then one day, when they were passing the flower bed, she said ‘golden rod’, which, like my daughter’s first words, would be remembered forever.
We are introduced to M who had travelled quite a distance to be there. He is worried about his first appointment at the National because he can’t speak very well and there’s a lot to say. I was surprised to hear that he’d only just been referred there by his GP. M had a wonderful infectious laugh. I was touched by his curiosity about my life, haltingly expressed. M asked about my father and when was I diagnosed with HD. ‘How old are your children?’ And, just as importantly, ‘What drugs are you on?’ The cocktail of medications which saw off my depression and made me more equable aren’t usually prescribed together. My specialist added Olanzapine to the mix, an anti-psychotic that stopped me from punching doors. Like Graham’s wife, I also had trouble sleeping, but Olanzapine and Zopliclone have helped, and we wrote the names of the drugs on a scrap of paper. Graham thought it would be better for M if someone came with him to his appointment.
The meetings are great but I’m tired when I get home. Writing is easier than speaking. I was pleased to receive an e-mail from P, a woman with HD who identified with my blog. Like me, she hates speaking on the phone, but longs to communicate however she can. By e-mail, we have talked about meeting up. We are both poor travellers and live some distance from each other. In the meantime, we have been writing backwards and forwards. She writes vividly and precisely about a childhood overshadowed by HD. My father had a late-onset HD, so he was very much himself when we were growing up, and I’m very grateful for that. Her mother had it, but nobody ever explained to her why her home wasn’t full of love and laughter like the homes of her friends.
My children did know why I was behaving so strangely, but I was anti-social before I became symptomatic. For the past few years, our family home has felt like a battleground. Before that, it was subtly socially selective. A few carefully-vetted feminists who shared my world view were allowed across the threshold, but the parents of my children’s friends were never encouraged. There may still be time to turn this around. I want Christmas to be the start of a new era where everyone feels welcome here, including my husband’s large extended family and my Christian cousins. My mother loved talking to people but never invited anyone round, which was weird now I think about it. She was shy but it looked like disdain. Or maybe she was disdainful. It never occurred to me to wonder why she didn’t have many friends because she was so hospitable to mine. Our front room in Brighton was full of chain-smoking Goths, not grown-ups.
My correspondent P has been thinking through various Christmas scenarios. She lives on her own; she has separated from her husband; and her children are older than mine. She gets on with one of them but her relationship with her other child has broken down. I’m worried that she doesn’t have enough help or company. She is in a new town and has no carers. She says she doesn’t have the energy to go to Social Services as she still appears to be well. It’s hard to convince them that you need help with basic tasks. I remember going through this myself, but I now feel so grateful for the infrastructure around me as it allows me to make the most of my life. I am picking up the children every day and although I can’t be much fun with them, my husband has recruited a creative teenager who grew up in a house with no TV and she can doodle for hours with my son J without getting bored.
I was pleased to hear that P’s son will be visiting her over Christmas, and they are going out so she doesn’t have to cook. Like her, I have been planning my Christmas outfit(s). I might do the Santa Dash around Victoria Park to raise money for the HDA. You don’t have to walk but you must dress as Santa. I want to go as an elf.
Forgetting myself 