The Celebrity Story That Unexpectedly Helped Me Accept My Meniere's Disease
It’s extraordinary how a few warm words from someone you’ve never met can pull you out of dark hole. About six years ago, I started developing a condition called Meniere’s disease. This has unpleasant symptoms including progressive deafness, extreme vertigo and nausea. The disease left me at a low ebb and struggling to cope. I was made redundant twice, I struggled to look after my two preschool children and I stopped being able to enjoy the thing I’d loved intensely all my adult life — music. And then I stumbled across an article by a fellow sufferer, TV naturalist Chris Packham.
Meniere’s affects the inner ear. It’s the build-up of pressure in the cochlea which distorts hearing, affects balance and over time can cause permanent hearing loss or deafness. For some people it occurs in one ear, for others it affects both. At least, that’s how a doctor might describe it.
My Meniere’s didn’t feel like that. It was more akin to being strapped to a roundabout. Inside a washing machine. Being pushed off a tall building. There’s the sudden, unpredictable and uncontrollable vertigo attacks. For the first three years, these came along around three or four times a month, each lasting about eight hours and being accompanied by constant churning nausea and vomiting. Then there’s the slow burn of the incessant howling banshee tinnitus. This doesn’t ever leave — remaining even when your hearing has slowly and permanently ebbed away.
Meniere’s is progressive, but it’s one of the few conditions for which that can be a good thing. The damage to the cochlea means that as hearing disappears, so too can some of the other symptoms. It’s about three years since I had my last attack of the spins, and I’ve habituated the tinnitus to the point where it no longer hinders concentration or stops me from sleeping. Most significantly, so far it’s only affected one of my ears. As long as you’re not sitting on my left and there isn’t too much background noise, I can hold a conversation.
But mentally I fell into a bit of a black hole, with the Meniere’s triggering all kinds of other changes.
Most comprehensive has been my changed relationship with music. For 25 years, music had been my constant companion, offering consolation and encouragement, energy and empathy. Now the disease had made it sound all wrong, and I didn’t want to hear it. I can’t remember the last time I bought any music or saw a live performance. I stopped loving music — and much else besides.
It was a dark time, and I began to consult Doctor Google about how I could make my Meniere’s go away. Doctor Google’s judgment at such times is famously terrible; he just directed me to bewildered and desperate people and obviously fraudulent miracle cures. But on one fateful occasion he directed me to an article about Chris Packham’s life with Meniere’s. This really shouldn’t have helped. I am belligerently and willfully resistant to the power of celebrity, so a tabloid human interest article should not have been the stuff of revelation that it was.
My inner cynic remains deeply disappointed with me, but here was someone I admire talking openly about things that affect me. More importantly, he was doing so in a way that accepted a chronic condition without being defined by it.
It helped me to raise my eyes and challenge the fear and the self-obsession. I’ve since been filled with glee at the sight of the non-human world getting on with life. I have become mildly obsessed with moths, tree leaves, apples. The physical feeling and sound of the wind — even a light breeze — has become spellbinding. I wonder if what I take from the natural world has expanded to fill the void songs and music had previously occupied.
They say if you lose one of your senses, then the remaining ones adapt and improve to compensate. You just have to be open to it.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.