Note from the editor: In honor of Epilepsy Awareness Month we will post several blogs in which the writers share their experiences with epilepsy. We start with Mike’s look at his life with epilepsy. We are extremely fortunate to have Mike share his life with epilepsy for the readers of this Epilepsy Association blog. His ability to focus on the positive is an inspiration for us all.
This is my fourth Blog for the Insights to Epilepsy website. By now you should be getting to know who I am. I am 49 years old and have intractable epilepsy. My initial diagnosis occurred in 1972 when I was eight years old. I was seizure free until I was twenty-one when they re-occurred. I was seizure free for seven more years until I was approximately twenty-eight years old and I have had break through seizures, with varied frequency and intensity, ever since.
Let’s face it, anyone of us who has ever experienced a seizure knows that it is a nerve racking experience in and of itself no matter how we feel about it emotionally. Epilepsy has impacted every aspect of my life including my ability to legally drive a car, maintain employment, my marriage and family, and (yikes!) my relationship with law enforcement authorities. Despite all of this, I opened my own law practice in downtown Cleveland, maintained my certified public accountant certification, set-up my Westside bachelor pad, and have solid relationships with my two incredible sons. Upon reflection, I’m doing a lot better than a lot of people without epilepsy!
My seizures returned when I was 21. At the time, I had a tremendous amount of fear about what was happening to me. I believe fear is a normal human response that everyone experiences at some point. I overcame my fear by relying on a core group of family and friends to hang out and do things with. This prevented me from hurting myself and also gave me support when someone from the community reacted negatively to my seizures. Believe me this happened more than once. I am now used to having seizures in public and don’t really care what people think about me. However, I don’t seek such situations and I do wear a Medic Alert necklace whenever I leave my apartment. I have told my friends, colleagues, and others about my epilepsy.
Although I am actively and successfully managing my epilepsy, it impacts my freedom and continues to stress me out. For example, I can’t drive a car which frustrates me, especially in our fast-paced world. I have alleviated this stress by using public transportation as much as possible. With a little planning and a lot of waiting I get where I need to be and generally on time. I memorized the time schedules for the routes I use most often. I love to read and carry a book with me everywhere I go, so my extra time on public transit is not a waste, but a luxury. When I can’t use public transportation, I have an excellent driver to take me where I need to go. Another luxury, right?!
Despite – or perhaps because of – the constrictions of my disease, I live a full, happy, and (sometimes) adventurous life. I keep very busy with both my law practice and the charitable organizations that I volunteer and belong to. I refuse to let epilepsy trap me in
my Westside apartment. First, I accept that life comes at me, epilepsy and all and I look forward to that challenge. After all, life comes at everyone and we all have to deal with what lurks around the corner. Second, I actively manage what others may call a detriment. For me, my epilepsy is a fact of my existence and I’m going to deal with it by focusing on my health, happiness and surroundings. Although, I have epilepsy, it does not control me.
Of course, not everything has been rosy. Shortly after my ex-wife and I separated, I was out by myself drinking when I had a seizure and was arrested for slapping a police officer. I came out of the seizure handcuffed to a gurney in the emergency room with a black and blue face and a broken ankle. Talk about stress, and frustration. As my sister says, I was in a bad place. This I think was my low point. If things had turned out differently, I could have lost my law license and CPA certification. That event taught me that my emotional health impacts my epilepsy. That night, I was being reckless and not using my head which had a pretty immediate and direct effect on my physical well-being. Now I understand that I must stay on top of my emotional health to be able to work with my epilepsy. (And, yes, once I recovered, I apologized to the policeman!)
Importantly, through this rollercoaster ride, new challenges constantly arise yet I keep a positive attitude and somehow manage to overcome them. One day, a cure will come. Until then, I take life by the horns, pay close attention to my physical and mental health, pray a lot, keep busy, and rely on the incredible people in my support group.
This is Epilepsy Awareness Month. I find that the more I accept and address my situation, the better my life becomes. So, I encourage you to take time to assess your relationship with epilepsy and, then, grasp life and let people know who we are and what we are all about. Now, I let the commuting drivers deal with frustration, fear, and stress! Give me my book, epilepsy management skills, and acceptance and I will gladly sit back and happily cruise on to my next life challenge.