This is Epilepsy - Guest Post by Jocasta Hornsey

Disability Awareness Week

This is epilepsy. This is lying in bed for hours not moving wondering if you can make it to the bathroom for a glass of water. This is walking through the street focusing on one object so that the world stops zooming in and out. This is staring at a computer screen wishing you could remember what you were reading but just trying not to think about your hands shaking. This is going out with your friends and suddenly wanting just to collapse. This is trying to buy lunch in Tescos and hoping that the cashier doesn’t notice that your whole body is trembling even as you enter your pin. This is sitting in a tutorial fiddling with a pen so it’s not so obvious that everything they are saying seems like white noise. This is getting up in the morning and wondering if it’s even worth leaving your room. This is going for test upon test thinking they might have the answer but always being disappointed. This is stopping taking your medication because the side effects are worse than the actual problem. This is sitting in your room on a Saturday night with 26 wires attached to your head as the NHS try to help by giving you an ambulatory EEG, but you’ve already pulled off the four on your forehead because you want to be able to go out in public. This is trying to explain to your tutors why you couldn’t make that meeting because you had an “epileptic episode”. This is wishing that there was a better term for “knowing that you have absolutely no control over your body or mind so you have to just stay still and close your eyes and hope that it will end soon”. This is remembering the moment you woke up in an ambulance two years ago and couldn’t tell the medic who you were. This is thrashing in bed at night to let out some of the frustration at the fact you can’t close your eyes without everything in your vision moving uncontrollably. This is not feeling sorry for yourself but angry at your own anatomy. This is a call for appreciation that everyone who has epilepsy is completely different, it affects them in different ways but in no way is it easy. It changes. It fluctuates. There is no cure. One day everything is wonderful and the next you feel you can’t function as a human being. Some people are able to carry on with their lives and some are not. It is not something to be taken lightly. Some people are taken during their sleep. Others in crowded places. Others surrounded by loved ones who are nothing but supportive. But it does matter that once you reach out to someone and tell them what’s going on, everything is much easier. Once you get past the looks of sympathy, you realise that yes, you do have a disability and yes, sometimes you have to just care for yourself, but doing that is completely justified. In this environment most people have something holding them back, be it mental or physical or anything else. And it’s shit, it really is. But actually accepting help is the best thing. Whether it means emailing your GP asking if there are any support services. Whether it means opening up to your best friend about problems that you were too proud or scared to mention before. Whether it means having hour long conversations with your parents about how Oxford really isn’t as amazing as you thought it would be. Even if it seems embarrassing, it shouldn’t be hidden or cast aside. This is how it is, although there is always a silver lining once you find a way of coping. This is epilepsy. 

 

As part of Disability Awareness Week we are posting guest blogs from OSDC members about their disabilities, today's is by Jocasta Hornsey. 
If you would like to submit a contribution, email: rebecca.colquhoun@worc.ox.ac.uk