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.

 

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.

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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.

So, because of that, I kind of go out and do more than ever before I would encourage other people to do the same. Live as if it’s the last opportunity to do something. Say yes more. I say yes too much, and to be fair I need to say no a little bit more, because I don’t sleep, ever.

But it’s definitely a great opportunity to try new things, when you suddenly get thrown into a situation where you’re dealing with something so new. Remember that everyone is going through something as well. It might be something tiny to you, but it might be something massive to them. And actually, by being kind to other people and realizing that — you know, the guy that pushes past you on the train, he might have had a really rubbish day at work; the woman who is letting her child cry in the corner, and you stood there tutting at them, someone in their family may have just passed away. You don’t know what’s happening in their lives.

And actually, by being more tolerant of others, it makes you happier in yourself. I suddenly realized, as someone in London, it’s an incredibly fast-paced place. Everyone’s rushing to get somewhere and do something, and pushing other people out of the way. And it’s nice to take the time to consider what other people are feeling. That tolerance comes back to you like a boomerang, because if you’re kind to other people, people are ultimately kind to you.

It takes sometimes a while to get there, and it might not be the same kind person, but it comes back to you eventually. Wear flat shoes, I cannot stress this enough. If you have unhappy feet, you have an unhappy mind, and that’s all I can say about it. I’ve got a slight heel on today, but we’re talking like tiny, and it’s upsetting me slightly. Wear trainers whenever you can because it’s just — when you’re diagnosed with something like Parkinson’s, you can wear them to clubs and get away with murder, it’s fantastic.

But some people trot around town all the time in heels, and I feel sorry for them. I feel sorry they have to wear heels all the time, because no one is happy in heels. No one! If they’re saying they are, they’re lying. I like to say this sentence to myself because I think I’ve been very, very lucky in the people that I have around me, but I found my port in a storm before the winds came. I knew who my people were before I needed them.

And that meant that when I looked for them, they were there. And I knew that I was sorted, and sturdy, and supported. Sometimes, if you think people are going to be there, you’re not 100% sure until you need them whether they are, you may not have been there for them in the past, they might hold a grudge. And having a support network when something bad’s happening, or when good stuff is happening, is really, really incredibly important. It’s great to stand on your own, but it’s also really important to have a team around you that are there cheering you on. Don’t grow up. I don’t mean like die or anything, we’re not going to get that dark I mean, don’t be a grown-up. Run around, do what you can. Enjoy yourself.

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Wearing trainers definitely helps with that, I find. People don’t laugh at silly things enough. I’ve been laughing in my head at the name Trump since this whole fiasco happened. I feel I’m the only one doing that, I’m hoping other people here do that every time as well. Great, that lady is nodding. Fantastic! It’s kind of running on the grass when you’re not supposed to and doing stupid things, wearing tops like this when you’re supposed to be a grown-up. When suddenly you’re dealt something that’s really massive, you realize that actually you can’t be ashamed of yourself anymore, you have to just get on with being yourself and doing what you do. And it’s incredibly freeing!

But I think children have it right, they have it set in their minds what they want to do, they’re just going to do it and have fun. As we grow up, that kind of gets shaken out of us a little bit. This man’s socks here are filling me with great joy, because he’s the man that likes colour.

We should wear more colour, and be happy, and be children at heart. Don’t sweat the small stuff, but really appreciate the small stuff that you can do I would say I never really appreciated steady hands, a firm handshake, being able to talk clearly, until those things became more difficult for me. So, don’t get hung up on the day-to-day little things if you possibly can, but appreciate the things that you take for granted. I hug someone now and it feels like I’m about to attack them because it’s all kind of — or I’m frisking them or something.

It’s great to know that you can go into a room and feel confident, and present yourself confidently, and having something like Parkinson’s stops that from happening. But I now appreciate the things that I can do so much more than I ever could before. So the tiny things that I’m left with, that I know I can still do, being able to stand up in front of a room of people, fills me with so much joy and happiness because I can still do it. And screw it, I’m going to it for as long as I can! Find something that is your cause, of what you want to stand up for in life, and stand up for it. Mine is slightly narcissistic, because it’s Parkinson’s.

I mean, that’s ridiculous I should have other causes that I look up to as well. But actually, before I was diagnosed, I didn’t really fight for anything. Now I fight for my own life, my own existence, and what I want to do in my life. And I fight for others.

I’m a kind of mouthpiece for those people as well. It’s made me realize there are other causes out there that I could lend myself to, and I could do more for them. Maybe not be such a narcissist. But I never had anything that I cared about that passionately before, I never did charity work, I never did anything like that.

Being diagnosed made me realize that we have an opportunity to do those things to help people. We have a mouth, we have arms, we can do things to help people. And finally, my point is: I stand in front of you as someone who physically looks nervous, looks scared. Perhaps it might seem a little bit frightening if you’re in London and you see someone shaking, in the times we’re in at the moment, everyone is aware of what everyone else is doing and keeping an eye on people. But if you look into my eyes and you hear me speak, you know who I am, you see me as a person.

And I have the opportunity, I can tell my story, people know who I am. But a lot of people don’t have that opportunity. It’s knowing that the body is just a shell for the good stuff that’s inside. The brain and heart is where the important stuff happens, that’s the magic. And it’s looking into people’s eyes when you talk to them, it’s being more tolerant to people and knowing that we’re all the same, ultimately.

But I have been left with a fantastic Parkinson’s situation out of my slightly rubbish package that I was given at the beginning. That is not a different package, that is what I was given to start with. I was given Parkinson’s, I haven’t changed that in any way, there’s no way I can change that, my chemical make-up is still the same. But the way that I see it is completely different. The way I feel about Parkinson’s is completely different.

The way that I feel about the world is completely different. I would just implore you to look at your own situation, see what you can do to make yourself happy, because being happy is an incredible thing. And ultimately, it’s in our hands. Thank you.

 

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