Ed Lecorgne’s ET story Part 2!

We share Ed Lecorgne’s story from where he left off age 17 in 2010 about to go to University. Here Ed explains his journey through Uni coping with ET….

March 2017

15128978_10154672839864720_931224996832953349_o (1)This is a follow up article to one that I wrote a long time ago. That one was entitled ‘a young person’s reflections’. In the original National Tremor Foundation’s newsletter that I responded to, the editorial team were asking for stories about how young people were coping with their tremors, and the situations they found themselves in. So I wanted to begin this with a moment I remember from my month in Myanmar. I was tired and exhausted, and sitting in a knock-off Wetherspoons pub in the ancient city of Bagan. I think they got round the copyright rules by spelling it weather-spoons if memory serves. I remember repeatedly asking the waiter for a straw to go with the cup of tea I was drinking, the combination of tiredness and slight hangover combining with my tremor meant there was no way I was picking up a full cup of tea. The look of blind confusion on the waiters face when he came back with a glass of water with a straw and I hastily grabbed the straw and dunked it into the tea. Tea from as straw is by far one of the worst ways to have tea, but I hadn’t had one in about three weeks so i was willing to go to any lengths.

But let’s go back a few steps. In 2010 when I was 17, I wrote an article that I sent in to the NTF website about being a young person with essential tremor. Beginning of 2016, Jackie Farrell, who I am sure you all know, and if you don’t, you really should, sent me an email asking me if I was around to come to an Essential Tremor awareness day meeting she was putting on, which I did. She also has been asking me to do a follow-up article to the original one I wrote over seven years ago for the past few months. Due to time constraints and other boring life stuff I have been putting off doing it until now. Upon meeting people at Jackie’s event and speaking to her afterwards I finally have found the time to piece some words together. So….

My name is Ed and I am 24 years old. I’m at that age where I feel old because my siblings are graduating from university and I’m living in a flat that I have to pay bills and council tax for. I have essential tremor in my hands/arms. I’ve known about my essential tremor since I was in Primary school.

At the March 2016 ET meeting in London Jackie asked me to stand up and talk a little about my job, university and what I’d been up to since the original article, and that’s what I’ll briefly try and cover here. I’ll start by mentioning university. If there is one place where no one will care if you have a tremor, it’s university. It’s possibly the most all-accepting place you go to if you decide to go. Sure, you’ll get the odd remark and when you meet a lot of new people it can be embarrassing to explain it…maybe the first 6 times, then you’ll get over it, trust me. The amount of new people you will meet will quickly make it commonplace, and no one will bat an eyelid. I mean, one person I met thought I was an alcoholic but that may have just been because I only ever saw them in the university bar, it’s hard to tell.

In terms of part-time jobs, I had some really bad ones during my university summers. Living near the Henley Royal Regatta and desperate for some holiday pub money I signed up for a weeks worth of work there for three years running. I think the worst one I was given was working at the ‘Coffee and Liqueurs’ bar. I struggle with one cup of tea or coffee, let alone a saucer, so to be given a tray of six espressos with saucers was a largely pointless exercise. After the futile second attempt in which all of the espresso landed in the tray or on my shoes, the manager quickly relegated me to a dark back room and put me in charge of mixing up the iced coffee, something that I gladly accepted. The other years were similar – the busy bars meant I had to get pints as close as possible, but in the heave of the crowds no one minded a little sloshed over the rim.

Then it came time for the dreaded moment when I left university. I say dreaded mainly due to the reality of having no money and not being able to generally hang around with your friends all day with no real responsibilities. But it also meant going for job interviews. So, in a suit that was a little to big for me, I went for my first interview at a company, my hands shaking like there was no tomorrow. I remember this interview vividly for two reasons. Firstly, because the moment I opened the door a dalmatian jumped on me, something I was not expecting and, with my fear of dogs at the time, didn’t exactly help assuage my nerves. Secondly, because it was the job I got and am still at today. The main reason I bring up my interview is because I was obviously very anxious, and my hands were not helping the scenario. But I remember what my now boss said when I told him about my shaky hands. He looked at me and just said ‘Everyone has things they have to deal with, when can you start?’

Now, three-ish years later, and still work there. My job is working for a publishing company creating resources for schools. I do a lot of varied jobs there, but the reason why Jackie asked me to stand up and talk about my job is because of one specific thing I’d been doing: Shooting and editing video. Yes, video. Imagine going up to your boss and explaining that you’d love to go and film some things to create informative videos for kids, but you physically can’t hold a camera still. Still, we looked at cheap equipment, and before I knew it I was on my own driving solo from the Canadian border to the Mexican border through midwest America with nothing but myself and the steady cam gimbal equipment, with instructions to film everything along the way. I can tell you it’s quite a nerve-racking experience driving on the wrong side of the road through the jammed highways and interstates, and to stop in a place you have never heard of and have to shoot exactly the right amount of perfect video, but you get used to it (you don’t). But regardless of my anxiety over my hands, and what I thought it would stop me doing, I spent 8 weeks in 2015 taking videos. And in October 2016, I went again, and did another four weeks. Meeting strangers every day, interacting with new people constantly.

I’m saying all this stuff because it was something that I never thought I had in me. It was the most extreme situation, where I was alone in a country I’d never been to for four/8 weeks solo, and I had to think about my hands every single day doing video. It was exhausting and tough beyond belief. But I’m also so glad I did it.

Now, there are days when my hands drive me crazy. I went to an important meeting for work this week and I was trying to give a presentation where my hands were all over the place. I tried to show something on a laptop, and ended up closing the whole presentation. I’ve ruined countless t-shirts, stained rugs, not been able to pick up cups of tea, eat food – I mean soups are out of the question regardless. For anyone who is near my age or still in their teens, selfies/videos. I’ve even had people come over at the gym and ask if I need help because my hands are shaking holding the weights (they were heavy though…).

Some days you want to just scream, and I have many a time.

But at the same time I wanted to try and show positivity. There will be things you can’t do, but there are hundreds of things that you can still do if you put your mind and effort to it. I’m trying to stay away from my own cynicism here – when I say there are so many things about yourself that you can focus on and change, that putting all your anxiety on something you can’t change seems like a losing battle to me.

I think to fall back on the excuse of ‘I can’t because of my tremor’ is the easiest thing to do. You should be able to say ‘I did it in spite of my tremor’. Challenge yourself. The two I’ve done are rather easy examples of this – I love to do writing but I can’t really hold a pen. So I learnt how to touch-type and now I can type faster than most people write. I wanted to go and do videos for my company but I can’t hold a camera still, so I researched equipment that I could ask the company to buy so that I could still create footage. I’m not under the pretence that all things are this easy, and many of them can’t be done. But trying is the important bit.

Okay enough of the sunny outlook for one day, if you meet me after this and I’m super cynical I’m just going to blame it on old age. I’ll be at the meeting this Saturday (depends when this post goes up), so come and say hi. If not I’ll put my email and twitter and things on the bottom of this email feel free to contact me. Bet you can’t guess what my twitter or instagram names are…

Email: edwardlecorgne@hotmail.com

Twitter: @Shaky_hands

Instagram: @Edshakyhands  (trust me I’ve edited out like 90% of the blur)

Ed Lecorgne

LLWET: Thank you Ed for sharing your Uni experiences with us and also encouragement for others of your age group.

If you are interested in reading Part 1 of Ed’s journey then you can find it on our ‘Young Adults with ET’ page.


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