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'I’ve had people assume I’m drunk or lazy'

With Aphasia Awareness Month this June, we talk to Justine Everson, 39, from Angel, London, about living with aphasia, the ‘communication disability’ that usually occurs after a stroke.

“As I grabbed the rail to steady myself up the London Tube stairs, I took a deep breath. Wobbly on my feet, I summoned all my might to carry on but before I took my next step a man barged into me barking angrily in my face: “Excuse me!”

“I’ve had a stroke,” I said wearily, hoping he would notice I was paralyzed down the right side of my body and that was why I was taking longer the usual to climb the stairs.

“So what!” he shrugged as he ran past me, knocking me into the wall. I couldn’t help myself - I burst into tears and the last nine years of frustration washed over me as I held my head in my hands.

I’ve had people assume I’m drunk, lazy or just plain weird because I often find it hard to get my words out and communicate – which is part of suffering from aphasia, a condition common after a stroke. It affects people differently and some people can’t read or write; some can just say a few words while others can speak but struggle with sentences. In my case the damage to the communication parts of my brain means I can’t recognize text very easily so I can read newspaper headlines and the price label on a gorgeous pair of heels but sadly I can’t read Closer magazine or the latest Jilly Cooper novel. Like most girls I love a good romcom at the cinema and while I still try and go occasionally, I find it hard to follow the story especially when the dialogue moves quickly. It’s these simple pleasures that we all take for granted that I miss so much.

I was 29 when I had a stroke. At the time I had a boyfriend, a job, and a brilliant life, which changed forever when I stepped out of the shower one day and collapsed. I couldn’t speak and I just about managed to utter to my then partner that something was seriously wrong before I fell to the ground. Drifting in and out of consciousness in an ambulance speeding to the nearest hospital, I was absolutely terrified. What was happening to me? Was I dying?

Until that moment, I’d always been really healthy. Yes, I smoked but like many young women my age I also went to the gym regularly, I ate well, I was vegetarian and I’d never had any major health problems before. People assume strokes only happen to old people – they don’t.

After I collapsed I spent the next four months in hospital recovering, and had intensive speech and physiotherapy. When I was finally allowed to go home I flew back to Australia, where I’m from, for a few months recovering with my parents, before moving back to London where I still live.

It was six months before I could talk again and even now, nine years after my stroke, I’m still working on my vocabulary and struggle with getting my point across as quickly as I’d like. For someone who loves to chat, not being able to communicate freely is very frustrating. I miss the banter and over the years I’ve lost some friends simply because they’ve found it hard to communicate like we used to. I guess if nothing else it’s helped me realise who my real friends are.

Living with aphasia can be lonely and much as I’d love to be in a relationship I haven’t had a boyfriend for nine years. It’s also hard for me to work because of my disability so I spend some of my free time volunteering as a receptionist for the charity Connect, which helps people like me. I’m a real people person, so it’s a good way for me to have a chat at my own pace and stay social. I’m also an aphasia ambassador, which is a good way to raise awareness about the condition and give something back.

I’m an independent person and it’s important for me to do things for myself. That’s why I can’t wait to go back to Turkey for the 14^th time this year on holiday. I’ve got friends there so I’ll be going alone. Living with a disability, particularly one that isn’t very well known or understood, is definitely challenging but I’m strong and determined and with the support of my friends, family and Connect behind me I know that I can tackle anything head on.”

*For more information about strokes and aphasia, visit www.ukconnect.org.

By Maddy Biddulph