Chasing Falling Stars

Sometimes you don’t know what it is that’s been missing until you’re crying with relief in your kitchen after a day filming with BBC 3.

I’ve felt for a long time that I’ve been looking for something. Not knowing what that ‘something’ is, not having an X to mark the spot on a map – I’ve been aimlessly trying to connect with anything, everything. In the words of Jack Kerouac, I’ve been ‘running from one falling star to another’.

When I was first diagnosed with Neuromyelitis Optica (NMO) and was in hospital learning to walk again, those stars burnt bright, they were instant achievement earned through gruelling effort and unwavering dedication. I could catch the stars before they fell. As soon as I’d grabbed one star I could drop it and go for the next – sitting up, standing up, walking frame, holding hands, letting go…going. Star after star, after star. Eventually though, the improvements became more gradual, less exciting and considerably less significant than taking your first steps again. The stars came few and far between, and they didn’t shine as brightly. In honesty, I’ve missed it – not being seriously ill, paralysed and all of the other traumatic stuff, but the feeling in my gut that came with each achievement, saying ‘this feels incredible’.

I’ve found snippets of that feeling since coming home from hospital. Speeding down a hill on a pushbike not knowing how, or if, my unpredictable legs could stop it gave me a rush. But it didn’t last. I got a buzz when Kirsty was trying to teach me how to jump , swinging my arms up and throwing my body up, the exhilaration of knowing my toes had just, just left the floor! However, I can’t keep riding bikes down hills and jumping up and down in the living room to get my kicks. I can’t just carry on being the young woman with NMO who is doing really well ‘considering’. I can’t just celebrate achievements that come off the back of previously being paralysed and partially sighted. I can’t just carry on making the best of a shit situation, because as my mother so wonderfully put it, ‘you’re still in a shit situation’. Where is my identity in that?

Sitting at a table opposite the presenter, two cameras within a few feet, under the watchful eye of the producer, I came to life. All of those falling stars surrounded me and burned bright as I relived my story. Animated and energised, I felt good enough and interesting and likeable. Just for being me. The cameras, lighting, and mic pack felt bizarrely natural, as though that is where I’m meant to be and what I’m meant to be doing – in front of a camera, just being me. I left drama school disappointed (for reasons I won’t go into) in 2009. I haven’t acted or been in front of a camera since. But this felt right. Okay, this is something that has come off the back of previously being paralysed and partially sighted, but that wasn’t what felt good about it. It was something else. A connection, the thing I’d been seeking. My identity.

I dyed my hair deep pink. I got my nose re-pierced. I unpacked boxes from our old flat, and filled my shelves with trinkets, and books, and teapots, and photographs that are an expression of me. The entire time, unknowingly, I had been searching for my identity. Looking the part is one thing, but really connecting with your identity through action and activity is another thing entirely. Restricted by mobility, pain, and fatigue, I’ve been wondering how on earth I can be me. Illnesses like NMO slyly strip you of aspects of yourself, so slyly you can’t even figure out what’s missing. How do you find your place in the world when you don’t feel like yourself anymore? How do you visualise the future when you can’t even truly visualise yourself? Sit in front of a camera apparently. Find what it is that makes you tick.

Exhausted from a day filming, I sat in the kitchen with Kirsty explaining the buzz I felt. “I felt alive, and I’ve not felt that in a very, very long time”. And what a relief. Months of wearing myself out chasing falling stars all culminated in deep, relieved sobs by the kitchen sink. The nerve pain still seared across my back, my legs still hung heavily from the stool, I still felt drained, I still have NMO – but with the addition of a very important layer…me.

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3 responses to “Chasing Falling Stars

  1. You might have NMO, but NMO doesn’t have you. Just like I have MS, but MS doesn’t have me.

    Just have to grit your teeth, put on a smile and shout out that this is who I am, these are the cards I’ve been given and this is what I will play with.

    It might not be the best hand, but a good player can win even with the worst!

    I read your first post here from February 1st of 2013 and I must say, you’ve come a long way from there. A major life change in pretty much every way and you have my respect for having coped with it, as you have.

    Now it’s a new chapter ahead of you, and I bet you anything, this will be an inspirational story about coping with chronic illness, that will help many on the same path.

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