This is a photo that I took on holiday last year but it’s a particularly poignant one for me. My shadow shows me in a wheelchair and disabled but inside I’m still the same person I always was. My shadow may be different, my life may be different but I’m still me. It’s photos like this that hit hard how others perceive me. They see the wheelchair, not the person who is in it. I feel like it’s my job to change this perception and remind people I’m still the person they once knew.
I’m still Katy. I still have the same personality. I still love cheesy pop songs, dancing (albeit wheelchair dancing now), singing and going out with friends. I still get drunk on two glasses of wine! I’m still obsessed with historical fiction books and enjoy watching reality TV. I still have the same sense of humour and I’ve developed a love of writing which has become my purpose in life, alongside being a mum. I still want to be invited on nights out even if I can’t always make it. I don’t want to become invisible just because I happen to use a wheelchair to get around.
My body is heavier thanks to the side effect of the many medications I take and, of course, older with wrinkles starting. The adjustments to my appearance have been tough for me to deal with. I’m very much about promoting body confidence and loving who you are but that has been a personal challenge for me. Putting on weight is out of my hands, it’s not something I have control over and exercise is out the question with the type and frequency of seizures I have. I’ve had to lower my expectations and not beat myself up for not having the perfect Love Island body. I’ll be 40 next year and I want to celebrate that. I’m lucky to be alive. Not all people with epilepsy make it to 40 and I went undiagnosed for 12 years. I have to accept who I’ve become and embrace it. I might not look like I did in my 20s but who does?
Strangers and acquaintances don’t like to ask why I, overnight, went from a normal, healthy person to not being able to walk. The truth is, I’ve been ill for almost 14 years. Yes, I’ve had periods of being better and lived a fairly functional life, but I hid a lot of my symptoms from everybody except my husband. I didn’t want to be dismissed by doctors yet again. I couldn’t go through the disappointment, after a terrible experience I had when I first got ill, back in 2004. This time I declined very rapidly in February 2016 and have been in a wheelchair ever since. Thankfully I’ve finally got a proper diagnosis, with epilepsy, although it still isn’t under control. Now there is no hiding my condition. It’s there for everyone to see whether I like it or not.
I’m always happy to explain my condition and I make videos about it on my YouTube channel, explaining the different types of epilepsy I have and dispelling some myths surrounding it. I’d rather people came to talk to me than just ignore me.
Don’t be afraid to speak to people in wheelchairs. We are still human and a lot of us don’t think of ourselves as being in one until we catch sight of that shadow on the ground. Remember the person on the inside, don’t just see the chair.