Remember, Remember

I tried to write a memoir  but I couldn’t remember anything about my childhood. The past is another planet. It was hard to get to even when I was well, but now it’s further away. The present has also disappeared from view. HD has affected my short term memory. I wander around the house forgetting where I’ve put things. It can three hours to get ready in the mornings because I keep losing things, finding them then losing them again. Where am I? I have no future to speak of as my life has disappeared into the cracks between the sofa cushions.

My mind is muggy; my cognitive deficit makes simple tasks seem complicated. I can’t cut a loaf of bread or change the settings on my mobile phone. There are five TV remotes on the coffee table and I can’t work any of them. I have been ripped out of time and deposited in the quotidian, a world I can no longer operate. HD has altered my co ordinates. Where am I? This blog will look everywhere for me, even unlikely places. And who am I?

I went from being at risk, to gene positive and I’m now in the early stages of the illness. My personal drama is just beginning; my tally of losses is small and some impairments more upsetting than others. I need to eat all the time. I’m always hungry and hate thinking about food. And I’m demotivated and feel guilty about taking an hour to get out of bed.

HD is an illness of mourning; you lose everything slowly enough to be fully conscious of every loss. Will I learn anything about the human condition along the way? It would be comforting to think so. The illness memoirists certainly think they have something important to communicate to all of us. Does my illness give me special insight? I wonder whether HD will also be an opportunity for personal growth.

Step by step, I am learning to be independent. I have small window to do this, but I am determined to detach myself from my husband. I don’t text him every time I spill a cup of coffee, like I used to or send mayday cries for help in any other medium unless something really bad has happened. T is often away and I used to call compulsively as I was anxious about everything and moaning about the weather. Now I’ve really got something to moan about it sounds the same to him. So I must keep the lid on it. Rather late in the day, I need to learn stoicism.

Facing a long, degenerative illness, how can I do without it?

It’s not what happens to you, it’s how you react to it that matters according to Epictetus,  Stoic philosopher of the early second century.

Whatever else happens, I want inspire my children, and be at peace with myself.

Misspelt and Misunderstood

I have a genetic illness that no one has heard of. I used to quite like being special but now I just wish I didn’t need to spend so much time explaining myself to healthcare professionals.

Neither my GP, my carers or my therapist has heard of Huntington’s disease. It is often misspelt – the t mistaken for a d – like the town of Huntingdon in Cambridgeshire.

As far as I know there are no living celebrities with HD and only one dead one. I was perversely very pleased to read that the folk singer Woody Guthrie had it, but less so when I read that his mother was committed to the Oklahoma Hospital for the Insane where she died from HD complications in 1939. Guthrie was 14 at the time.

Was Guthrie’s compassion and fellow feeling born from this experience?

Folk singer Woody Guthrie inherited HD from his mother.

I hope my two children will inherit compassion, not my malformed gene.

I’ve lived with HD for a while without writing much about it. I did try a couple of times, but ended up painting it black like the Rolling Stones. Depression is one of the symptoms of this illness not a response to it.

I do have a pressing need to communicate something about my predicament. But how can I trust my judgment or know what my motivation is? People often say they are writing to help other people in their situations or to inspire the general reader. I’ve read a lot of illness memoirs, for business rather than pleasure and the ‘searing honesty’ sometimes belies the egotism of central character. I think a dramatic brush with death, if you emerge victorious, seems to make self important people even more so. One literary editor who’d had a stroke wrote about the celebrities at his bedside.

Salman Rushdie didn’t visit me on my sofa during the when I was beached there for 5 years.

The accounts of non celebrity sufferers of HD do read more honestly; their stories are heartbreaking, There are people self medicating with drugs , suicides and families torn apart. HD has been called the worst illness and I would concur. It muddles up your personality, ruins your relationships, makes you gradually more and more dependent on others and less and less loveable. It leaves you unable to communicate but takes decades to dispatch you. It starts in mid life, when everyone around you is having their second baby and enjoying the fruits of their labours.

It is a movement disorder that makes you restless and fidgety, progressing to writhing and pitching. And while you’re declining you have plenty of time to reflect on the image of your daughter or son in the early stages of the illness themselves and wrestle with the terrible burden of guilt for this toxic inheritance. What could be worse than that?

Incredibly, sufferers are programmed to find something positive in all this. I can’t decide whether this blog should be an inspirational read for other HD sufferers, a primer for the general reader to raise awareness about the illness; a theoretical meditation about identity and forgetting… I don’t feel qualified for any of these tasks.

Suggestions welcome.

Archie the Cat

Archie is our cat. He is a Maine Coon – one of the largest breeds of domestic cat – with a personality disorder. I blame myself for bringing him up badly. When he was a kitten, I was running a feminist magazine from my kitchen table and he kept getting in the way. When this happened I shouted at him.

‘Archie… get down!’

He never did. He kept knocking Diet Coke all over my colleagues’ keyboards and nipping their ankles. A few months after the demise of this project, one of them wrote a piece for the Huffington Post about Archie and the problem of unprofessionalism in feminist publishing.

A has tried to give Archie therapy but it hasn’t worked. Then she tried to train him by saying ‘sit’ before she gives him her food, but he never does. He has terrorized my poor carer by launching himself at her with bared teeth so he’s banned from the house when she’s here. I’m thinking of getting a dog – my neurologist thought it would improve my quality of life – but Archie is a big bruiser – the staffie of cats and I know who would come off worse.

In spite of this, I have compiled a shortlist of family friendly dogs who tolerate cats on a pre loved pets website. Dr Wild has seen his patient’s lives transformed by this motivational and non judgmental presence in the home. I have spent the past few years marooned on the sofa when I’m physically capable of going out and I know how much people living with HD benefit from regular exercise. When I do go for a walk, I sleep better and my restlessness abates for a few hours at least.

Archie, a formidable Maine Coon who likes nipping at ankles.

How I live now

In the working week my  husband goes to  work. My children are both at school. I am alone in the house when my carer isn’t here. I wander around losing things and ruining my clothes by washing them at the wrong temperature. My unconscious wants me to fail at these tasks so I can justify getting someone else to do them. At a recent care review they decided I had enough support but I lack companionship. I curse when I break the china (HD has made me clumsy) There are only two china bowls left and a couple of chipped cups. Every morning I spill coffee and breakfast all over myself, so I wear the same jumper every day.

We live in a big house in Kentish Town which we bought when Kentish Town was quite down at heel. It is big though, with grand proportions.  At the time I pictured fabulous parties and literary salons with drinks from the 50s cocktail book I bought in a charity shop. French 75s were my favourite; gin and champagne. When I look at the vola taps in the bathroom and the gentleman’s club wallpaper in the hall and the gold overmantle mirror in the sitting room and the wardrobes full of clothes in moth protector bags.

It all seems like a folly.

There are books everywhere, but I can’t read them. It’s not just a lack of concentration but something like aphasia which means I can’t understand the words. This isn’t that common in HD and they thought I’d be pleased to be a special case. I am, but that’s small comfort when I can’t pass the time as I’d like to. Everyone seems to be joining book groups and telling me about them. I did try audible but I couldn’t follow the sense of things. What happens to a writer who can’t read? The evenings are the worst. When my husband is out or working late, I watch The Nightmare Neighbours Next Door. Last night it took me a while to register that it was a repeat. In his nursing home, my dad watched the BBC news channel – which repeats everything –  on a loop with the sound turned up. Someone suggested watching classic films instead. Is that a good idea?

On the wall in the bathroom there are relics from my past. My mother’s Bob Dylan programme in a frame with 1969, the year I was born. My miners’ strike propaganda posters are among my most treasured possessions: A Closed Mind Closes Mines and Give Youth a Future. But I feel ambivalent about nineties me and also strangely competitive. I used to write regularly for The Guardian and there are covers in frames with my byline on.

One of my bylines in the Guardian in the nineties.

There’s a garden office that I insisted on because the hubbub of family life was stopping me from concentrating on my opus. I used this for a few months then came back indoors.

I’m not quite alone. I have Radio 4 and our vicious cat Archie for company. I keep hearing the Archers without ever listening to it. Apart from Rob, I couldn’t tell you the characters’ names. Why don’t I change stations? I like getting annoyed with the plays and comedy programmes. I feel like myself when I’m shouting at them.

Radiohead: I feel like myself when I’m shouting at the radio.

Are We There Yet?

I wish I was able to work. I haven’t been in gainful employment since the nineties. All my friends work and they are time poor. Most of them have young families and old parents who need looking after.

Should I volunteer? The woman from the Huntington’s Disease Association thinks it’s a good idea, but I’m too apathetic to organise this.

When the kids are at school, I watch Bargain Hunt and Escape to the Country. I brood on the past and wish all the therapy I’ve had actually changed me and allowed me to take responsibility for myself. It made me aware of my narcissistic tendencies but I didn’t become ‘other focused’ until very recently.

The truth is, I was impossible to live with before I became symptomatic. I never learned self-sufficiency. Without ever meaning to, my mother, Susan, nurtured clinging dependency and I clung to my husband for dear life when I should have been collaborating with him.

For reasons I will explore in later blog posts, Susan didn’t want me to be independent.

Me and my mother in 1984

I think I used Huntington’s Disease as an alibi for behaving badly. My life with my husband T flashes before me. He supported all my projects and paid for childcare when I was working on my book and feminist magazine. He has never been anything but kind to me and his family embraced me in spite of my spikiness.Last summer, when we were on holiday with his family I was grumpy and difficult. It really was like having another child.

‘Are we there yet?’ I kept saying in car journeys of more than 10 minutes. I sat with the children at dinner and moaned about the walks in the medieval towns and kept asking T to buy me an ice cream.

T has a big family and mine is dwindling. My mother died in 2001 and I met T shortly afterwards. She never got to meet him but I’m sure she would have approved. I often think how different things would have been if she had been alive. She would have been a wonderful grandmother and she would have cared for my father and supported me during my illness. Contrariwise, I’m glad she died without knowing about HD. My father, Murphy, kept his at risk status from all of us and, unlike my children A and J, I grew up in blissful ignorance of HD.

When Murphy was diagnosed, he couldn’t face telling me. An old family friend called me and told me, this must have been very difficult. I’m not very good with dates, but I know this happened on 7/7/2005, the day of the London bombings. Tom was filming on the tube and I couldn’t get in touch with him. When he did call, I had googled Huntington’s Disease and the world went spinning off its axis.

It is a rare genetic disorder that typically strikes in mid life. I was in my mid thirties at the time.

My father died in his care home in Henfield last October.

I am profoundly lonely. I want to use my blog to talk about the problems of having Huntington’s Disease and my day to day experiences living with it.

I want to connect with other people who are affected by HD.

Please feel free to get in touch,

Charlotte.