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Guest post: Living with Huntington's Disease

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MumsnetGuestPosts · 17/10/2017 16:35

I have Huntington’s disease, a degenerative neurological illness that typically manifests in mid life. I’m 48. I’ve been symptomatic for the past eight years, deteriorating slowly, with less and less to do.

My friends are all busy juggling jobs and young families. Their lives look enviable from where I’m sitting. My life is becoming ever more constrained. I really don’t have much time left, but I need to be realistic about what I do with it. I can’t take off on a Triumph or flee the city in search of a more authentic off-grid existence. I want to spend more time with my children so I’m picking them up from school while I still can. My carers cook for us all, I can’t multi task, but the school run is still challenging. My nine-year-old son’s school is 10 minutes walk away but I’m often late. If I am there early, I look at my phone rather than talk to anyone. HD makes everyday interactions difficult. I find the melee at the school gate tricky to navigate; I can’t seem to make the right expression or even remember who his teacher is. Yesterday morning, I went to the school office to pay his dinner money and I didn’t know what class he was in. My HD brain is like Teflon.

The headmistress knows about my condition and I’ve only told a couple of the mothers, but they have been very supportive. Once in a while, when it’s not raining, I go to the skate park for a moan with a depressed mother who is a ‘stuckist’ artist with a spiritual side.

When we get home it’s hard to think of creative things to do with my son J. I can’t make fairy cakes, or understand the rules to Labyrinth so J plays this two-player game on his own. We used to have a child minder who was a beacon of positivity. J really misses her.

I really miss the collaborative projects that made me feel most myself. The cruel thing about HD is that it impairs quickly but takes years to dispatch you. I can’t read or think clearly, or get to meetings on time. My brief run as editor-in-chief of an online feminist magazine ended as it had begun - in stressed out sleepless nights and self -recrimination. My colleagues knew about my condition but called me out for my unprofessionalism. I’ve had to scale back all my work commitments but I’m hoping to see Feminist Times 2 rise from the ashes as a print publication in March. This time, my role is consultative, and I have been clear about my limitations. My daughter will be pleased if it comes back as her perspective was always valued. She misses the personal and political conversations around my kitchen table.

On the bathroom wall, there are painful reminders of past times that I can’t bring myself to take down. Unfairly, I am competing with my former, pre-HD self. There are framed pictures of Liam Gallagher and Tracey Emin’s unmade bed. I’m so glad I was young in the nineties and early noughties, when watching Big Brother was anthropological not voyeuristic. I was briefly a columnist for The Guardian, I’m proud to say I hated Tony Blair before it was fashionable. I did repeat myself though, it’s hard not to. Bored of the sound of my own voice, with nothing left to say about The Spice Girls, I gave up my column to write a book.

At the best of times, writing is isolating. I have an office in the garden with no wi-fi away from the family. I never go in there though. The bottom of the garden still feels like a long way away. So I work in a room next to the kitchen where the comings and goings of my children are a reassuring background hum. Even when the noise is amplified Spotify playlists, I still prefer it to silence.

People keep saying: “are you writing?” and, “what are you working on?” I regret not finishing my book. My carer helps me with my blog. I have never blogged before but the form really suits me as I can shoehorn it in between the endless appointments and picking up the children.

There are support groups for people with HD but they only meet once a month. Should I volunteer? Or join Class War? My dear friend Murray brings me anarchist literature whenever he visits. Opposing social cleansing certainly keeps him busy. I went to one of their actions outside the offices of Zaha Hadid. He is too cool to have a mid life crisis, but he is always reinventing himself. I am inspired by his example.

Charlotte blogs about living with Huntington's Disease on her blog here

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sparkleyes · 27/10/2017 07:13

Hi lecs

Thanks for sharing your story here you are both such strong women and rightly should be proud of everything you achieve everyday. No one can understand this disease who isn’t affected by it it’s just too huge, the repercussions too great that’s what really gets to me.

I’m interested in how people affected by it have had the discussions with their children. It’s all so new to my family we haven’t yet broached it with the children, my DH is dead against mentioning anything to them. I am torn.