You hear me stress it over and over how epilepsy is a roller coaster ride. Everyone’s epilepsy journey is a much different roller coaster ride so finding different ways to cope with it may be hard. After working with my friend Aly, we came to the conclusion that writing is one of the best ways to cope with your epilepsy or any chronic illness you may have. We hope we inspire you just a little bit to pick up that pen and start writing down your amazing story.
Aly (@acanfieeld) - All of the greats have their stories told over and over again in school and churches, Harriet Tubman, Alexander the Great, and the list goes on and on. They have their stories shared because of something miraculous and heroic they did. However, so-called ordinary people do noble things every day, and their stories go untold, which is why I have decided to share my story and encourage others to do the same. I have always enjoyed writing random poems or short stories that come to mind, but now my writing has a purpose; to help people see and understand an unseen disease. I never shared any of my writing publicly until I was diagnosed with juvenile myoclonic epilepsy, or JME for short, in July of 2018. At first, I did not know how to react to this new, life-altering diagnosis. I shut everyone out and chose to keep everything I was dealing with to myself. Eventually, I turned to my best friends: pen and paper, or Microsoft Word if I was feeling fancy. Writing allowed me to get my thoughts out without having to worry if anyone was going to judge me. It lifted the fear of being looked at a certain way because of how I was feeling or what I was experiencing. Writing down your feelings, mentally and physically, will help your mental state in ways unimaginable. It also helps if you have a chronic illness of some kind because you can track your symptoms and how you feel, which will help your doctor better understand your situation. Lastly, it helps your story be told. You do not have to be in a history book to be considered one of the greats. You are already great. Sometimes all it takes is getting the negative thoughts and emotions out of your mind to see that.
During these troubling times, writing can be the best way to cope. It helps you maintain a safe distance from everyone around you to decrease the spread of COVID-19, and it allows you to feel like you are not alone. I encourage everyone to write, even if it is a random poem or something small that happened in your day. As I said, you do not have to be studied in school for people to hear your story. Your story matters and will impact lives in ways you are not even aware of yet.
Kyle - As we climb our epilepsy mountain, it’s crucial that we take time to just be with us. Forget about what’s around us, and regain the strength and faith we need to make it to the top of our mountains. Whether it’s sitting on your bed with the headphones in or on your laptop writing like me, it’s something we all need to incorporate into our lives. Five years ago, I found the many benefits writing can have when dealing with seizures. For the majority of us, we deal with other challenges aside from our epilepsy. Writing gives us a way to express anything that may be on our minds that we might not want to share with others just yet. When I spent my lovely two weeks in the hospital for my SEEG, I really started using writing as a way to express my thoughts, but also to remember what I’ve been through. Yes, after my SEEG my blog started, but not everything I write is published.
What I quickly realized was that some of the stories I did write down in regards to my epilepsy could really make a difference in our community. I understand how hard it is to share your story. What I think helped me overcome all the fear of sharing mine was looking back at the stories I’ve written about. When you see your stories, you see how strong and inspiring you really are. No one expects to deal with seizures and the roller coaster ride that comes with it, so take time to write about your good and bad times. Doing this will help you moving forward when you build up the confidence to share your story. I challenge you to write your stories down and start to gain the confidence to share a few with some of your closest friends.
Fast forward to now, because being quarantined has never been a better time to start doing this. Throughout my five years of writing blogs and just getting stuff off my mind onto paper, I’ve never done it more than during quarantine. While I have spent time writing about my epilepsy, I’ve also noted how it’s been related to the current events. The beautiful thing about writing is that you can write about one thing like your epilepsy or anything you can think of. I strongly encourage you to spend some time alone and write what’s on your mind and relieve any feelings you may have. Who knows, you may end up wanting to blog!
Writing offers so many benefits, and as you can see it can help cope with epilepsy. You don’t need to be an author to write. Anyone can grab that pen and paper to start writing their amazing stories down. Epilepsy sucks, but writing helps us cope with it!