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HYPERMOBILE EHLERS DANLOS SYNDROME

living with an invisible disability

For 15 years I’ve been in constant pain. Chronic pain. Nerve pain. The type that just doesn’t go away. I have a collagen deficiency: Ehlers Danlos Syndrome, so I dislocate really easily; it causes cramps and spasming, affects a number of my organs, and to add to the cocktail, anything too cold that touches my skin makes it feel like I’m being burned. But for years, I’ve mostly hidden the accoutrements from view whenever possible, to start with crutches, then my wheelchair, walking sticks, and especially the grimaces, so if you just know my photo and voice from Radio 3, you really wouldn’t know there’s anything going on. I’ve designed it that way. 

 

At the same time, I’d say 9/10 of the medical professionals I’ve encountered have said to me ‘use your music - it’s in your bones’ and ‘you have access to one of the greatest resources’. But this derails me. Because if there’s one element I can’t square with my pain it’s music. When my pain’s loudest, I don’t want to use music to battle it. I battle the pain to make space for the music.

 

But now I’ve written and presented a feature for BBC Radio 3, with an accompanying Early Music Show, and they’re designed to re-open conversations about pain, one of the most widespread hidden disabilities among musicians. Art has the ability to conjure the agonies (and ecstasies) of pain, but it’s hugely subjective - and how powerful or helpful is music in relating shared experiences? In this feature I talk to fellow Radio 3 presenter Fiona Talkington about musical language, and to violinist Nicola Benedetti about the importance of listening to our bodies. Theatre Director Rachel Bagshaw leads me into a world in which she’s channelled pain into a creative space, and neuropathologist turned musician Malcolm Galloway tells me about how being on stage is, for him, the best medicine. Finally, Goldsmiths' Professor Joydeep Bhattacharya helps me to explore the medical science behind the phenomenon of ‘Flow’ – explaining how I once suppressed painful sensations long enough to perform as a flautist.

BBC RADIO 3  -  08 NOVEMBER
SUNDAY FEATURE

The Silence of My Pain

BBC RADIO 3  -  08 NOVEMBER
THE EARLY MUSIC SHOW

How Pleasing the Pain Is

 
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