‘My brain is in a war it will lose’ — writing with Huntington's disease
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(start voice controls)
(capital) I regularly trespass (period)(capital) In secret and not I (apostrophe) m not literally breaking in anywhere (comma) but my mind wanders (period)(capital) Daydreamer (comma) would be the polite term people use when they mean I (apostrophe) m now seriously forgetful (period)(new paragraph)
I readjust the headset, make sure the microphone is right in front of my mouth and talk the computer to life because my words literally have power.
“Open document,” I say, and the screen obeys, presenting a document that records my words in text.
(indent)(capital) Gratitude creeps in when I’m not expecting it (comma) because without this (capital) Assistive (capital) Technology (capital) I would officially be irrelevant now (period)(capital) Silenced (period)(capital) Forgotten (period)(capital) Because (capital) I can no longer type (period)(capital) Or hold a pen (period)(capital) Or sometimes get my words out (period)
I speak the words on to the page. The computer translates and I become one with the page. Something that was once so easy, speed-typing words, sending emails, working, living, now reduced to a laborious task that requires concentration, determination and technology.
I can still communicate, I think, I still have so much to say.
The day I was handed my diagnosis I’d never even heard of it. As the news seeped in, it wasn’t death that frightened me, or even dying, it was being a burden, being irrelevant.
“Your genetic test showed something,” the neurologist had said. “Unfortunately you have something called Huntington’s disease.”
At the time I’d been relieved. I’d never heard of Huntington’s disease so I naively presumed it couldn’t be that bad. Sensing my positivity, he quickly extinguished it.
“Imagine Parkinson’s meets ALS meets Alzheimer’s, in one disease — that’s what you have.”
In the moments that followed I learnt there was no cure. Very few treatments. That I was terminal. That my brain, slowly being destroyed by this disease, was in a war that it would lose. In the weeks that followed I refused to even discuss Assistive Tech, let alone accept I needed it. Until typing became so challenging I had to admit defeat.
That memory haunts me every time I sit down at this desk and slide the headset over my ears. I’m grateful for the technology, for the ability to still communicate, but there are also those moments that chisel away at my self-esteem, because when I look at the page I see another challenge: that once this is finished I will need to edit it. Remove the voice commands. Pretend I didn’t need them. Make them fit your world.
(indent)(capital) You fight infections (period)(capital) Fight cancer (period)(capital) But (capital) Huntington (apostrophe) s disease is like moving into a town where you go to fade (period)(capital) And everyone wants to leave (period)(new paragraph)
I tell the computer to save my work and prepare my body to stand. I think the thought stand but know that my body will only obey when it wants to. I need a break.
(indent)(capital) For me buying chocolate has become a political act (period)(capital) Not any old chocolate (period)(capital) It has to be (capital) Swiss chocolate (period)(capital) Silky (period)(capital) Smooth (period)(capital) Ideally from (capital) Marks and (capital) Spencer because somehow that makes me feel even more indulgent (period)(new paragraph)
As so frequently happens in M&S I’m stood between two women in the queue. Shopping basket lady who I bet owns a labradoodle. She looks like the type. Not that I think there’s anything wrong with labradoodles, or labradoodle owners, but with every inch of my temporal lobe gobbled up by this disease comes a darker sense of humour that sometimes only I understand.
Mrs Labradoodle has done her weekly shop. Freshly squeezed orange juice, pastries and pasta sauce placed skilfully on the conveyor belt. I watch her. I watch her knowing that I will never be her age. I am 31 and if I make it to 35, I’ll be doing well, so watching her at what I guess is around 55 I remind myself to let go of the breath I’m holding.
I place the chocolate bar down, fumble with my purse and pay. My political act complete. See, when people talk to me about Switzerland, they don’t mean skiing. They are politely asking if I’d considered Dignitas. The Euthanasia clinic. I know they think they are being compassionate but all I hear is, “if I were forced to live your life, I’d choose death.” When I’m still living, albeit differently, my neurodiversity doesn’t equate to me as making my life valueless, it just means things have changed. I eat that Swiss chocolate because I’m determined to live.
Back home, I face the computer. My work littered with the commands that I’m forced to use. I start to edit, to erase my disability. It’s like playing hide and seek: the structures that make my work mine are forced to hide in a forest, replaced by what the neuroaverage world wants. Full stops. Question marks. They want me to pretend that I can press those keys on my laptop just like everyone else.
(indent)(capital) And (capital) I do it (period)(capital) I want to fit in (period)(capital) Desperate to be accepted (period)(capital) But somehow (comma) with all the pretending (comma) editing and hiding (comma) instead of celebrating my disability (comma)(capital) I (apostrophe) m left questioning why inclusivity includes everyone (comma) but women like me (period)(capital) Neurodiverse (period)(capital) Brain damaged (period)(capital) Disabled (period)(new paragraph)
Assistive Technology isn’t perfect. My bank still isn’t fully accessible; like so many things online, accessibility is an afterthought, the poor relation. Even though there are so many of us, people like me who need information to be presented a little differently to welcome us into the community.
(indent)(capital) The way (capital) I experience the world co (dash) exists with (capital) Assistive (capital) Tech (period)(capital) It keeps the world open for me (comma) but without pressure and accountability most things online remain out of reach (period)(new paragraph)
“Delete bracket, replace word, symbol.” I may be a wilted flower by the standards of the world, one that must accept that the life I’d planned for will no longer be a reality, but I’m still in charge of my laptop, my words that dance across the page and speak the same language as the world.
The process of removing myself from the page is time-consuming, and although I try to see myself in the blank page around the words, all I see is where I need to be erased to make the world accept me. (capital) Gone, becomes (invisible me) Gone.
Once completed, as I hold the page, I can’t help but feel betrayed. When my work is finished, edited, and polished, although it ends up digestible for the world, it somehow does so by making my experience less.
(end voice controls)
The 2020 Bodley Head/FT Essay Prize
Every year, the Financial Times and The Bodley Head, one of Britain’s leading publishers of non-fiction, team up to find the best young essay-writing talent from around the world. This year we received more than 850 entries, submitted from writers all around the world.
The winner of the £1,000 first prize is Carrie Jade Williams, a 32-year-old based in County Kerry, Ireland. Williams has been writing for seven months, after being diagnosed with Huntington’s disease. “When I received my diagnosis I wrote a bucket list and decided I wanted to write a novel to leave behind, and that’s really how my writing started,” she says. “Getting a diagnosis that means you’ll stop being able to communicate is terrifying, but writing gave me back my voice.”
This year’s prize was judged by Alec Russell, editor of FT Weekend, Bodley Head publishing director Stuart Williams, and FT contributing editor Simon Schama, along with two guest judges: the award-winning writer Yiyun Li and the leading literary agent Emma Paterson. This year’s runners up are Saranya Subramanian, 23, from Mumbai, for her essay “Cockroach and I”, and Caroline Eaton Tracey, 30, in Mexico City, for “A River Passes By Here”. All three essays are available as Bodley Head eBooks.
Read more about the prize at ft.com/bodley
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