“Not every condition is always visible.”
I live with Epilepsy. I have lived with this condition for going on 24 years. I was diagnosed with this condition when I was 4 years old. I had a seizure while sitting on the worktop age 4 while watching my mother make my lunch bag for school. I had 2 seizures after and was sent to the hospital for an appointment with a epilepsy specialist. My family and I had to rediscover a new kind of normal. I had to get comfortable with taking medications every single day at such a young age. I had to have time off school when I had seizures to recover. I took medication for 10 years until it seemed my epilepsy was over. Id not had a seizure in a year. I came off medication and lived a normal happy life.
These many years later my life is taking a completely different route than what i had expected or planned. The epilepsy came back with vengeance in 2009.
Most people might take into assumption that because I look happy and healthy that there’s absolutely nothing wrong. Here’s the thing. For the most part, I am completely happy and healthy except for that one minuscule problem. That bump in the road, the beast. Epilepsy. When it’s not causing me seizures, auras, when the medication side effects aren’t awful and frustrating, life is ok. I love to grab hold of the best aspects of life by the hand and live it because I’m so thankful to be alive right now and I want to do everything in my power to treat my body right. Even when the storms of life are happening, I do my best to keep a positive perspective.
The most challenging moments of living with epilepsy are when I run into moments when I’m doing so well and I hit a bump in the road. It’s in those moments I plummet down. You can have all the family and friends in the world which are the greatest ever but the bottom line is you have to stand yourself up when you’ve found yourself fallen down because it’s so easy to beat yourself up.
I’m very blessed to have this charity Ive set up, to advocate and work hard to bring the world to notice epilepsy. Im blessed because even though I’ve severe epilepsy and cluster headaches (another story), take over 34 tablets every single day, I am doing something good despite all the bad.
I have chosen to make Team Jo Epilepsy Foundation my full time chosen pathway. Educating, advocating and raising money for equipment and research is where I want to be.
I find that the most difficult thing about accepting the reality of having epilepsy at times is having to put some really good moments in life on hold as a result of seizures, tests, hospital visits and admissions or anything related to epilepsy. However, it just makes me all the more appreciative when I can have a good time.
I never thought I would do what i have done. Being known over the world for raising awareness of epilepsy is a total concept id never imagined. I never thought I would or could begin an Epilepsy charity and blog. I am shocked honestly. Im thankful for those amazing people who have got me this far. The followers, likes, shares, newspaper articles and online articles. All the views on my youtube. Those that help at events. I thank you.
When people tell me I don’t look ill. Or like i have epilepsy, I find it tough. Sometimes I wish there was as much compassion with cancer. You don’t hear someone tell a cancer sufferer that they don’t look like they are ill, do you. it can be difficult.
I’ve picked up a few new favourite hobbies since becoming diagnosed with epilepsy. With the help and encouragement, the teachings from my best friend and neighbour I’ve learnt how to make jewellery, sew, do paper craft. I could never do that before epilepsy.
Epilepsy has taught me so much. Epilepsy has taught me not to take a single moment for granted. To be kind to everyone you meet. To be selfless.To smile more. To laugh more. To find joy in the little things. To speak positive when you could speak negative. To be good to yourself. I could go on and on. I learn new things all the time. Every day.
It truly does lift my spirits when people tell me ” You are so strong! Keep on fighting! You’ll get through this.” Even though at times i don’t feel strong. Thank you to those who see me in my journey, who care for the journey that I am on and believe in me as I take this journey. You give me strength.
“You don’t know how strong you are until being strong is the only choice you have”
– Bob Marley
When I meet and/or speak with another who is on the journey with epilepsy too, I’m encouraged to speak with them in that I like to tell them that everything is going to be okay. At first the road may be a little rocky, you may be sad and upset in discovering this diagnosis but it is not the end of the world and you have an entire amazing life to live yet. Place your eyes upon goals you want to set and overcoming the obstacle in front of you. Inspiring others walking the same journey as you. Life is still a beautiful gift.
I was and sometimes am still quite surprised at how some people will judge you when they discover that you have a medical condition. When I began on the diagnosis of epilepsy again, it didn’t take long for most of my friends and family to fade out of my life, never to be seen again. Not all of them disappeared but most of them stopped calling. stopped going out to coffee together. Stopped wanting to be a part of my life. Most of them no longer wanted to get together anymore at all. I was quite hurt and let down. Throughout the years, whenever word epilepsy was mentioned, a bewildered look appeared upon their faces. Shocked and confused that I could have this condition. Nervous perhaps at what to do or what to say and how to behave around me.
The nicest thing you could ever do for someone living with epilepsy or any medical condition is to let them know that no matter what, you will always be there. That their condition will never change the relationship you have with them. That you wont treat them with kid gloves or leave. I felt hurt when friends left my life. But even more that some family members did also. For the people that stayed, Im thankful for them. For the relationship between us not changing because of the beast.
To know that you’ve taken the time to read this blog lets me know that you support my journey and I thank each of you for taking the time out to do so. It means so very much!