What Parkinson’s Taught Me: Emma Lawton at TEDxSquareMile (Transcript)

Here is the full transcript of Emma Lawton’s TEDx Talk: What Parkinson’s Taught Me at TEDxSquareMile conference.

TRANSCRIPT: 

Hi everyone, I’m Emma, and just under four years ago, at the age of 29, I was diagnosed with Parkinson’s disease. I can’t control my own slides because my hands are shaking too much, so someone’s controlling them for me.

It’s you, that’s where I need to look. Thank you. I’m going to do this every time I need to control it. Thank you. I want to talk to you about what Parkinson’s has taught me during that time.

It’s very subtle. I was diagnosed just under four years ago at the age of 29. I wasn’t expecting Parkinson’s. No one is at that age. No one is.

If you’re a girl under a particular age, I think it’s quite rare for women to get it, and it’s definitely rare for 29-year-old women to get it. I’d had a strange feeling in my right arm for a long time. Something that I couldn’t pin down to anything in particular. And I’d been ignoring it. And it was eventually that my dad said to me, ‘Go to the doctors, get it sorted. You need to get this sorted, it’s really important.’ And I did.

And they took me for brain scans, and I thought, ‘Ooh, we’re getting serious now. This is getting a bit — it’s kind of risky territory.’ But I’m still thinking, ‘Probably a trapped nerve, or a carpal tunnel at worst.’

I was never thinking anything more serious. And the brain scans — while I was waiting for them they said to me, ‘It could be Parkinson’s disease, it could be Huntington’s disease, or it could be Wilson’s disease.’ And in the weirdest thing that anyone’s probably ever thought, I was rooting for Parkinson’s, because the other ones you die from, and I wasn’t ready to die. [29/04/2013] This was eventually my diagnosis date/ It took a little while to get there, but it was actually a day that for me was a day of decisiveness, not a day of sadness.

It was the day where I knew how to move forward and how to proceed with things. It was also a day that I had my family around me. We went on a fun family day out that day, because we were all together, we just thought, ‘We’re here, let’s do something fun.’ And it became the day that I knew where my support network was, that they were around me, they were there for good to help me. And every text I got, I got more and more positive in return.

One of my juniors at work sent me a text saying, ‘Trust you to get an old person’s disease.’ And I thought, ‘Great, that’s the level we’re going for.’ We were back to normal immediately.

There’s 127,000 people currently in the UK living with Parkinson’s disease, I am just one of those people. But I have been given an opportunity to tell my story countless times, and I think that’s because I put a slant on it that is a positive one. It’s definitely easy for people to digest, but it’s also made it easier for me to come to terms with it.

Because ultimately, I was dealt this big, old, ugly package of Parkinson’s and I thought, ‘What am I going to do with it? I’ve got to find out what to do with it to make my life good, and make my life strong, and to make decisions for myself.’ And I realized that actually, I couldn’t change what was happening to me. [C8H11NO2] I had a lack of dopamine in my system, and that is something that is a massive deal.

If anyone knows anything about Parkinson’s, Parkinson’s causes a lack of dopamine, a chemical which controls temperature, mood, your movements, the way your brain communicates with every single muscle in your body. You’re fighting a battle against your brain and you’re not going to win. But I thought, ‘I can repackage this. I work in branding, I can repackage this and actually make it something that works for me and that I enjoy.’

So I’m still dealing with the same thing, but I’m dealing with it in a way that leads me to positivity and happiness, ultimately. And I’d love to share with you the ways that I’ve actually found happiness in something as big as Parkinson’s. Some is through what I’m wearing. Obviously, this makes me happy. So I’m going to share with you my ten ways to find happiness when it really doesn’t want to be found.

These are the ten ways that I’ve looked to what I have as a situation and actually made it my own, and made it something that I’m happy and proud of. Don’t look for happiness. Ultimately, if you go searching for it, you’re not going to find anything long-term. I’ve looked for it in the form of men on white horses carrying armour and things like that. I’ve looked for it in the bottom of Häagen-Dazs tubs.

I’ve looked for it in the bottom of the scrolling page on ASOS. I’ve looked everywhere for it. And ultimately, you find happiness for a fleeting time with those things, but happiness comes from within, and I know that’s a massive, massive cliché, probably everyone’s told you it a thousand times. But if you’re happy in yourself and who you are, then you promote happiness to other people and that comes back to you sevenfold. The people around you will be happier as well.

Never bring a prop on stage when you have Parkinson’s, you can’t be trusted. It’s okay to say you are having a shit day. It’s okay to not be okay, you know. You can base on that old saying which I love, which is, ‘You can cover a turd in glitter but it will still be a turd, essentially.’ If you experience the worst of days, then you will experience the best of days.

You have to feel that unhappiness to feel the happiness that you get from a good day and from good things that are happening in your life. And ultimately, by saying to people, ‘I’m having a terrible day.’ And being honest, and by actually being someone that has to go out and talk about Parkinson’s, I’m doing everyone a misjustice if I’m selling it as something that is amazing, and it’s all about tinsel tops and things like that. It’s not. It’s actually incredibly hard.

But by being honest with people, they know how to treat me, they know what I expect from them, what I do and don’t want help with. And it makes it easy for all of us. Because every time I tell someone I have Parkinson’s, I know it breaks their heart a little bit. It may be the tenth time I’m telling someone but it’s the first time they’re hearing it. Be impatient, with yourself, not with other people, because that does not lead to happiness on anyone’s time.

Be impatient with yourself and don’t settle. I could have very easily hidden in a corner, with slippers on, on a chair, done nothing for the rest of my life, and no one would have judged me for it because it’s a big thing to deal with. But I do more now than I’ve ever done before, and that is because I feel like I have nothing to lose. What’s the worst that could happen? I’ll get Parkinson’s? Done that, you know. It’s alright.