My Chronic Condition Does Not Define Me
It’s 9:07 and I’m standing on a street corner in central London like some ‘early bird catches the worm’ hooker.
I think I’d favour that right now. If that was why I was here then at least I’d be doing something useful and potentially earning some money (if windswept hair, skinny jeans and chunky boots are your prossie attributes of choice.) But the truth is stranger and probably harder to digest. I’m Emma. I’m 32 years old. I have Parkinsons Disease. I’ve been stood in the same spot for 15 minutes because I can’t walk properly when my medication hasn’t kicked in. And I’m late for yet another meeting.
I bet that took you by surprise didn’t it? It surprised me a fair bit too when at 29 I was diagnosed with the degenerative condition I knew very little about. Similarly to most other people of my age I was drifting a bit, comfortable in my job, happy with my lot, I’d come through the angsty teenage years and was thinking ‘now what?’ I was going out too much, working too late and generally burning the flaming sambucca at both ends. I looked at my friends getting hitched and having babies and didn’t feel ready. So I floated. Plodded along. I think I was waiting for something to happen. And boy did it happen, just not in a way I ever would have expected.
For a year or so I’d been feeling an odd sensation in my right hand but had passed it off as a trapped nerve to anyone who asked me about it. It felt slow and stiff to the point that my work colleagues dubbed it ‘the claw’.
My parents however saw through my jokes and were worried so at my dads 60th birthday I promised him, as the lamest gift ever, to go to the doctor and get it checked out.
I didn’t really take the doctors appointment very seriously at first, I was there to appease my parents and the trip was a necessary evil to set their minds at rest. But as my allotted 15 mins came to an end the doctor, concerned about the hand and my unbalanced walk, typed up her referral for a brain scan. In a crashing thud the penny dropped that we weren’t talking trapped nerves or joking about claws anymore, this might be serious. The scan revealed that my brain wasn’t producing enough dopamine, the chemical that’s pretty important in the process it uses to talk to your muscles and tell them what to do. I was sent to a Neurologist and the rest, as they say, is history.
A history that feels like another life and another me. I think everyone at some time or another has their pivot point, that moment where something significant happens and everything shifts. My mum, my emotional compass, tells me everything in her life came together and she felt whole when she had me and my brother. That until then she felt like she wasn’t completely fulfilled. I feel the same way about the change in myself since diagnosis. And this may come as a surprise- hell I may even get lynched for saying it – but I like myself a lot more than I ever have before. Parkinsons brings out a nice colour in me. I suit Parkinsons.
Being lumped with something this big puts everything into perspective, sorts the stuff you should sweat and the stuff you can shelve and makes you decisive about what you want so you push yourself to do more. It also flashes a huge light on the people who will always be there for you and ushers the fair weather friends out of the way.
Having Parkinsons is hard. Physically and emotionally. But every single cloud it brings has a diamanté encrusted lining if you look for it. Sometimes you have to look pretty hard but it’s always there, and finding it fills your heart up. I’ve had to change the way I think to allow myself to stay positive when everyday throws up new challenges. I see it as a sort of game.
The low point: Low dopamine levels cause painful foot cramps
The high point: I get to buy a lot of trainers
I think I probably have more trainers than Kanye. However, I’d be willing for the man himself to challenge that brazen claim. I’ve never been a high heels sort of girl and Parkinsons kindly gave me an excuse to not have to teeter around like Bambi on ice more than once or twice a year (the obligatory birthday and New Year celebrations.)
The low point: Drugs
The high point: Drugs
I’ve taken mind altering drugs in more bars and clubs than Daniella Westbrook (I think the correct terminology is ‘medication’, but I like the dramatic effect.) Standing on a light up dance floor stirring medication into my drink (usually with a glow stick or something equally ridiculous as a spoon) when you know anyone else would probably go to prison for doing such a thing is surprisingly fun. I’ve sipped it while naked male strippers gyrate. While friends neck Jagerbombs. I’ve sipped it from champagne flutes and paper cups. With a Rosé sidecar and a Baileys chaser. I’ve taken 100 tablets into a Pixies concert and no one even flinched as they checked my bag. Howard Marks step aside.
The low point: Everyone’s gran has it
The high point: I get to exceed people’s expectations
Don’t get me wrong, I’m not ageist, there are some incredible older lads and lasses giving Parkinsons a beating. But it gets a bit weird when you tell people you have it and their frame of reference is someone a good 45 years older than you. I definitely expect more from my life and from myself than I’ve ever done before because I don’t want to be old before my time. I don’t go easy on myself just because I wobble, or stick to things that feel safe because I shake.
The Low point: Diagnosis can blow your world apart
The High point: I know how strong I am
Not meaning to sound like Kelly Clarkson song but the something incredibly freeing about knowing what you can and can’t handle in life. I’d still kak myself if I had to jump out of a plane or walk a tightrope but at least I know I can beat a complex neurological condition and not let it ruin my life.
My parents and friends have noticed my new outlook on life and welcome it. Now, more than ever, I feel their love and support and that spurs me on because I know whatever happens they’ve got my back. It makes you take risks and accept new challenges because there’s never a hard fall if things go wrong, they’re the cushions that appear just as I tumble. But ultimately the thing that makes every day exciting and gives me a positive starting place is feeling happy in my skin and knowing who I am. And I have Parkinsons to thank for that, it pulled me up by the boot straps and gave me a direction. I wasn’t ready for it but I naturally and instinctively knew how to cope with it just like my mum did her newborn baby. And like her I can’t imagine a life without it there.
I’m Emma, I’m 32 and Parkinsons changed my life. Just not in a bad way
(Note from the editor: Many thanks to Emma Lawton for sharing her story with us as her first post with us as a house-guest! For more information about Parkinsons – visit www.parkinsons.org.uk. Emma’s first book Dropping The P Bomb (www.droppingthepbomb.com) is available now. Read more about her here. To become a house-mate and contribute articles to The Glass House, click here.)