As I was on my flight back to Ottawa yesterday I had somewhat of an epiphany. I realized that I had started to count ‘seizure free days’ in the same way that recovering alcoholics count their days of sobriety. Now I only realized this because I was reading a fabulous book, Ninety Days by Bill Clegg which is all about his personal recovery from a crack and alcohol addiction. I would highly recommend it; it’s extremely engaging, and shows life through the lens of someone who has struggled with addictions. It’s also a fast read, which makes it easy to get through.
Anyways, I digress. I realized that this method of counting seizure free days was contrary to my other methods of getting both mentally and physically healthy. Although this method may work for recovering alcoholics, I can tell you that it does not work for someone like myself who is coping with epilepsy. These are two different issues here, and one remedy is not meant to solve both.
This is how I see it: When I have an episode and I suddenly have zero ‘seizure free days’ under my belt, I feel like it erases all the hard work I have done in managing my stress, hours of sleep, exercise and nutrition. It’s this ongoing spiral that makes me feel like the victim, which makes me feel even more powerless and nervous about the brain activity in my head. It also makes me angry for being stressed, which does absolutely nothing to help the situation.
With this type of thinking I become ruled by the episodes that I have had, and the fear of (potentially) more to come. It also makes my life succumb to a structure that is completely filled with epilepsy, and makes little room for life. Augusten Burroughs, author of This is How, an anti-self help book, writes a chapter on how to live with chronic medical conditions and terminal illnesses. His suggestion in dealing with chronic medical conditions is to let your life make room for the illness, instead of the other way around. So if I apply this theory to my life, this is how it would look: The majority of my life would be focused on school, hobbies, my relationships and other things that I am passionate about. In contrast, a little slice of my brain would be aware of my epilepsy, but it wouldn’t dominate every corner, nook and cranny of my life. It would just be part of it.
As a young child I had about maybe two seizures a year, and always in my sleep. Epilepsy was just a label but I didn’t feel its effects. Because my seizures have changed so much, I find myself almost grieving the life that I used to have. I’m not complaining about the life I have now. I am grateful for all of my friends, family and opportunities that have been given to me. I carry around extra worry and anxiety about the danger that I could find myself in. To shed this weight would be better than anything else in the world.
Essentially, I don’t want people to feel sorry for me. I just needed to get this out in order to rid myself of the weight it holds. I’d like to sum this post up with a quote from Dodinksky:
“Our struggles can either build chains to enslave us, or provide lessons to assemble a character with purpose” – Dodinsky
Thank you so much for reading! Love to you all! xox
To read more information about Bill Clegg and his book Ninety Days, feel free to check out this link: http://www.interviewmagazine.com/culture/bill-clegg#_
To read more information about Augusten Burroughs and his book This is How, feel free to check out this link:http://www.theglobeandmail.com/arts/books-and-media/this-is-how-by-augusten-burroughs/article4216975/
Check out this facebook page for more quotes from Dodinsky and other inspiring individuals https://www.facebook.com/positiveoutlooks