January marked 10 years since my first seizure.
I could focus on 10 years of negatives quite easily as there are a lot. Instead I’m trying my best to focus on positives which is why I present to you a list of 10 things I’ve learnt in the last 10 years of seizures.
1. Hold people close, don’t push them away. I made this mistake early on in my journey, as most do, and it was the worst thing I could’ve done. People with epilepsy are at an increased risk of experiencing depression and anxiety. Isolation is a key reason for this so trying to avoid isolating yourself is very important. It’s never too late to break that cycle though and I’m so grateful to myself for letting people in even when I only let one or two people in. Not everybody will accept you as you are but you will find those who do and you’ve got to hold them as close as possible. Friends help each other get through anything.
2. The choice of who I will be is up to me. If I decide today I want to cry at my situation that’s my choice and it’s okay. If I decide I’m a purple hero who can take on the world today then that’s my choice and it’s just as valid. Deciding to identify with terms like “chronically ill” or “disabled” is my choice and nobody can tell me whether or not I have to identify or have to ignore those terms.
3. To be thankful for my health. I think everyone with a chronic illness appreciate their heath in a way those without illness don’t understand.
4. Art is healing. Whether you’re painting or listening to music art of all mediums can’t cure you but can heal your mind and soul in a truly magical manner. Always create or appreciate what’s been created. You’ll thank yourself later.
5. Being mature for your age isn’t always great. I’ve always naturally been quite mature for my age but once my heath started to go downhill I had to grow up quite quickly. A friend who had no idea what was actually going on once told me “you’re so mature that I worry about you growing up too fast and missing out on just being a kid.” I brushed him off at the time because I didn’t want to face that. I wanted to take pride in maturity. I’m lucky I have a mother who did everything in her power to make sure I got to enjoy being a kid but my friend was still right to some degree.
6. Mourning is helpful but dwelling is not. A lot of people with chronic illnesses and disabilities go through a valid stage of mourning their health and the life they once lived and/or the life they had hoped to live in the future but will no longer be able to. This is valid and something some people just have to go through to be able to enjoy their current life. Dwelling on the fact that I missed out on just being a kid or that I missed out on representing my country for a sport that has my heart does me no good. What’s done can’t be undone. I must mourn my losses and move on.
7. Hope is a balancing act. In my earlier days of training in Taekwon-Do I had to learn how to balance on one foot. I fell over a lot. With my heath I have to have hope but I have to balance it. I’ve fallen over a lot with this too. Hope can be the thing that singled handedly gets you through some really hard stuff. Hope can also be the reason you have to go through some really hard stuff. Every time I try a new medication I hope it’s the one for me. Every time a medication fails for me (which has been a lot) my hopes are shattered. Going through that process so many times really can be a hard knock to the soul if I’m not prepared. As my mum told me at 11: hope for the best but be prepared for the worst. It’s something I’m still learning to master.
8. Laughter is light. When I first started to learn balance at Taekwon-Do I would just get frustrated and grumpy when I fell over. Eventually I learned to have a laugh at the situation before getting back up and trying again. Some days I just didn’t want to laugh though. My health is the same. Some days I’m just going to be frustrated and grumpy that I fell again and had another seizure. Some days I’m going to laugh because my brain is still recovering from my seizure and I’ve asked my mum to “unlock my Apple juice for me.” Yeah, I really did that. Yes, you can laugh too. If I don’t laugh at moments like that life will get too dark.
9. Questions aren’t always answered. Will I ever control my seizures? Nobody can be sure. Will I continue having seizures for the rest of my life? Nobody can be sure. Will we ever find the right medication for me? Nobody can be sure. Will I fall victim to SUDEP? Nobody can be sure. Not all questions get their answers. I have to accept that and continue living.
10. Sometimes just surviving is enough. There’s a difference between surviving and living life. When I go to a concert, I’m living. When I’m stuck in a hospital bed sleeping for hours on end, that’s surviving not living. Surviving is just as valid and important. Surviving is enough.