'My body was rapidly unravelling': living with motor neurone disease

The Guardian 6 months ago

I was sitting on the commode getting washed on Wednesday morning when I heard the news about the death of Stephen Hawking. Although, like him, I have an impressive case of motor neurone disease (MND) and can no longer walk nor talk, I never really felt we had the same illness: his long life, not to mention his genius and academic career, seemed to put him in a different category to me. It was still a shock, though, so maybe I had identified with him more closely than I thought.

I was diagnosed with MND in May last year, 16 months after the fingers on my left hand started getting mysteriously stiff and a year from my first visit to the GP. This is entirely normal with MND, which is tricky to diagnose, but the months of inconclusive tests are horribly stressful. My body was rapidly unravelling, yet I still had to try to negotiate my life and maintain some semblance of authority as a secondary school classics teacher. To the anxious newcomer, MND presents an extremely unappetising vision of the future. Media coverage tends to be quite sensationalised, especially when dealing with people arguing for euthanasia. Journalists often focus voyeuristically on the horrors of the physical symptoms, which can make researching the illness quite a traumatic business.

This, in addition to the unpleasant fact that for my generation “spastic” was the playground insult of choice, made the months leading up to my diagnosis by far the most difficult and stressful part of the experience so far. I have been attempting to reclaim the word spastic, as spasticity is one of my chief symptoms, but it still provokes shock and denial.

Trying to keep pace with my rapidly deteriorating limbs was a challenge: I felt that MND kept moving the goalposts unfairly. I discovered the brilliant invention of a device called a key turner, which spared me the impossible task of putting the key in the lock, but soon I was unable to raise my arm enough to use it. Social services installed grab-rails around my house, but it wasn’t long before I couldn’t open my fingers enough to grab them. Lastly, a raised toilet seat preserved my independence for a while, but eventually my weakened thigh muscles banished me to a commode and a hoist.

It was my friends, colleagues and family who supported me during this time. We developed a kind of dance to get me out of cars, everyone developed their spoon feeding and nose-wiping skills and I learned that the friends and family members who you want in your life are the ones who will unflinchingly help you get up off the loo and pull your pants up. My lovely pupils also played an important part as they willingly got into the habit of carrying my books, logging onto my laptop and occasionally teaching their own lessons if I was having a meltdown. Thanks, boys – you are a kind and classy bunch. Finally, my employers were unbelievably sympathetic and made all kinds of thoughtful adjustments to my working life until the terrible day when I was declared unfit for work and embarked on my new career as a professional invalid.

As my speech slurred into a spastic sludge and I collapsed into a wheelchair I found that in the eyes of the world, my IQ halved and I ceased to be an adult. People started speaking to me loudly and clearly and became prone to murmuring “bless” as I rolled past. My shoulder gets patted and my cheek and hand are stroked; on occasion, people ask “how is she?” right in front of me, and once someone patted my arm and told me I’d done really well after I had performed the astonishing feat of drinking a cup of tea. I’m no Stephen Hawking but I’m far from stupid and I find this kind of patronising attitude utterly enraging and dispiriting.

My life has been saved – in a manner of speaking – by my Smartbox, a nifty little computer with a clever voice synthesiser which allows me to “talk” to people. I control it with a mouse attached to my glasses and it enables me to access the internet and change the world through the writing of my blog.

It’s difficult to respond to a prognosis of “about a year”: people with terminal illnesses often write that they were inspired by their diagnosis to maximise the remainder of their time and to purge themselves of evil or petty thoughts. I have had no such revelation nor, sadly, have I received a burst of divine wisdom from the jaws of death: I just bumble on in the same time-wasting manner as I have always lived. I feel I’m not really facing up to the truth of my situation, but I don’t know how to. I haven’t discussed it with my family either – how do you start a conversation like that?

From a global perspective, I’m aware that I am in an enviable situation. I have enough to eat, my house seems unlikely to be shelled in the near future and I have access to excellent healthcare for free. And yet, global situation apart, it’s incredibly painful to mourn your life in advance. One of the hardest things is worrying about the effect it will have on my family. I have nightmares about one of my nieces or nephews cracking up with depression because of Auntie Helen’s death. Each one of their birthdays I forget, I know it’ll be the last time. Of course this thought makes me cry, but which of us can choose our own destiny?

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