Here’s What I Know (about Epilepsy)

Tabitha Johnson
Tabitha Johnson

From the blog editor: This week Tabitha Johnson has contributed her thoughts about living with epilepsy. We thank Tabitha for this reflective post about her experiences.

Here’s What I Know (about Epilepsy)

I was diagnosed with epilepsy when I was 15 1/2.

Since then, I’ve seen the ins and outs of emergency rooms for multiple reasons due to this thing. I’ve been down, but now I’m stronger than I have ever been because I know I can’t change this.

I know I have to look to God for my strength, and keep going no matter what may come. I pray every day for more research on this disorder and cluster of disorders. The brain is such a complex and intricate thing, but with research and study a cure is possible. I mean, look how far they have come with cancer research.

One thing I always tell people is “I hate the word epileptic because we’re not epileptic.” We are people with a disorder that affects certain parts of our lives. Some people with epilepsy can drive – some can’t. Some can run and jump, skip and hop, and play; others are too medicated to do so. We are people … we’re just like anyone else. Calling someone epileptic is like calling someone Band-Aided because they fell and scraped their knee. When you define a person by something, they might feel they have to live like that. We’re just people with a little bit of a problem that won’t go away.

I know you can’t live in fear of epilepsy. You can’t live in what ifs, whys and possibilities. It’s boring and not fun. I live my life because quite frankly we’re not promised tomorrow or even the next ten minutes. I’ve had a seizure where I’ve stopped breathing. Now I know that life is temporary … that every breath I take counts. So I know to make my life count.

I know to live within the means of my doctors’ orders, but I don’t stay stagnant. I live it up, I have fun and I’m happy. At first, after I’d have seizures in public, I wouldn’t go out for a while, or talk to my friends. I would really beat myself up about the seizures. Sometimes when bigger seizures happen, which thankfully are not that frequent, I still beat myself up. But I’m not as hard on myself as I used to be. After a bigger seizure, I sleep for a while, then I try to bounce right back. I get back to work, go back to church and get back involved. As I’ve said, we’re not promised tomorrow or the next 10 minutes.

The past two years have been one heck of a journey because my body started rejecting different medications. I can’t even tell you how many doctors I have seen. I’ve lost two jobs. I lost my license, my apartment and my car. I’ve bounced around place to place due to losing everything and being sick. But one thing I can say – I know I’m stronger now than I’ve ever been. I know that I am the person I am today because of the hell I’ve faced during the past two years. So, yes, I count it all as a blessing. Do I know what’s to come? No. But I know I’ll live, I’ll smile and I’ll count every breath as a gift.

I know that I am incredibly blessed with the people in my life … my sister … my church … the Epilepsy Association. I’ve always had someone by my side calling me or texting me.

Finally, I know that we have to talk about epilepsy. We have to post about it. We have to make people more aware about epilepsy. I know people need to ask questions about epilepsy, so many questions, in fact, that it blows up Google. Will you help me talk about epilepsy?

Thoughts About Being a Father and Having Epilepsy

Editor’s note: This month Mike shares his thoughts about raising two boys while managing epilepsy. We don’t often hear a father’s point of view, and thank Mike for sharing his thoughts and feelings. Dads you are welcome to join the conversation by posting your comments. From all of us at the Epilepsy Association, we wish Dads a Happy Father’s Day.

Mike Wesel
~Michael Wesel

If you read my first blog you would know that I have had epilepsy most of my adult life.   I was first diagnosed with Epilepsy in 1972, when I was eight years old. My seizures were controlled later that year and I was seizure free for thirteen years.  They returned in 1985 when I was twenty-one and they were controlled again later that year. My seizures returned again in 1992. I was twenty-eight and have had break through seizures, with varied frequency and intensity, ever since.

I have two sons, the oldest was born on December 18, 1994 and the youngest on January 2, 1997.  I have had uncontrolled seizures and have not driven during their entire lives. My ex-wife and I separated in 2001, when the boys were only seven and four and were divorced in the spring of 2004.  According to the shared parenting plan my time for visits was on Wednesday nights and every other weekend.  I was responsible for picking up the boys and taking them to my home and she was responsible for picking them after my visit with them was over.

When we were first divorced I lived approximately a mile and a half from my ex-wife’s house.  Due to the location of our homes the only way for me to pick them up for my visit was by a taxi.  As the price of gas increased it became virtually impossible for me to get a cab to pick me up to go such a short distance.  When I opened my law practice, I moved to Lakewood, Ohio which is a very short bus ride to my office in downtown Cleveland. I soon found out that I was going to have to reduce my visits to once a month because of the transportation cost.

This became a source of great frustration and stress for me. The greatest source of loneliness for me is the quiet in my apartment after my sons have left from a visit. I have found that although I may not see them as often as I would like, I can remain actively involved in their lives by calling them quite frequently. Also, I take advantage of every opportunity to see them that I can. I try to get to as many of their school activities or other activities as possible.  They both have worked in my office copying and filing documents for me.

With the advent of the cell phone, I even text them as a way of communication even though at forty-nine years old I am not fond of texting.  My younger son thinks I call too much, but that’s alright, when he is older he will understand.  My oldest son now drives when they come to visit. Finding a free weekend out of our busy schedules has become more of an obstacle for them to visit.  However, we remain in contact by phone, email or texting on a regular basis.  In a sense the issue has resolved itself.

My oldest son is now a senior in High School and will start college in the fall.  He hopes to become a chemical engineer.  My youngest is a sophomore in High School and is on the Cross Country and the track teams.  I call them almost every day whether they like it or not and they know that I love them and vice versa. Remember anything is possible if you put your mind to it, use common sense, keep a positive attitude and maintain a good sense of humor.

About Managing a Professional Life and Seizures

As editor for the Insights into Epilepsy blog, I invited Mike Wesel to be a contributor for his site.  I first met Mike seven years ago when I joined the Epilepsy Association staff and he was a member of the agency’s Board of Trustees. Mike is a CPA and attorney in Cleveland, and a father of two boys.  He successfully manages a busy life even though he may experience a seizure at any time.  I believe the way Mike tackles everything with a can-do attitude including his professional and charity work, his family and his management of epilepsy contributes to his success and happiness.  Mike’s contributions to this blog will inspire others to persevere, to be happy and to have a gentle heart.   ~Andrea Segedi

I am an attorney and Certified Public Accountant. I live and practice tax law in the Cleveland Metropolitan area.  I was first diagnosed with Epilepsy in 1972.  My seizures were controlled later that year and I was seizure free for 13 years.  They returned in 1985 and were controlled later that year. After graduating from law school, I started having break through seizures around 1992. I have had break through seizures since then and they still continue today.

I started working for Ernst & Young (E & Y) in August of 1990.  I had been working for E & Y for approximately two years before my seizures returned.  At first my seizures consisted only of the aura, which was not very noticeable, and gradually got worse until they turned into the typical seizures that I had experienced in the past. I had already developed a working relationship with most people in the office so they did not react adversely to what was happening to me.  Even if they had reacted adversely to my seizures I don’t believe that I would have let it bother me; although, I was constantly worried that I would get fired or laid of because of my seizures.

This created a lot of stress at the time.  Most of my stress resulted out of the frustration I had over my seizures. I don’t like blacking out and losing control of my faculties.  I have learned to deal with this by maintaining a positive attitude and never losing hope that some day I may gain control of my seizures. Some people believe that this is unrealistic but who is to say what may happen in the future.

After I left E & Y, I worked in industry for approximately five years for two local companies in Cleveland.  After I left the last company,  I tried some home based business that were not successful.  I then tried to find a job with a law firm in Cleveland.  The economy was not good at the time and there were no openings for tax attorneys in Cleveland.  I was tired of not working and decided to start my own law practice.  I have found that wherever I have worked that most people are empathetic about my epilepsy.

Working for myself, although challenging and stressful in different ways has alleviated the worries of working for someone else and having seizures.  As my own boss, as long as I am to court on time I can keep my own schedule. Currently my seizures are less explosive and I don’t black out as much. However they still occur on a regular basis. I have found that keeping a positive attitude and a good sense of humor while letting the people around me know my situation helps reduce the stress and frustration of epilepsy in the workplace.  Never lose hope and be sure to wear purple on March 26th. I know I am!


~Michael Wesel

Welcome to the Epilepsy Association Blog


I am pleased to be writing the inaugural blog for the Epilepsy Association . I hope you will visit often, and find this blog site a place where you get useful and practical information about things that matter to those affected by epilepsy and seizure disorders . There is still so much that is unknown about epilepsy, and many people living with a diagnosis of epilepsy feel that they are alone on their life journey. We want this blog to provide—a lifeline for this journey. We hope this site is a source of information and inspiration.

As the CEO of the Epilepsy Association, it is my distinct pleasure to speak on behalf of those in our greater Cleveland community living with epilepsy. These remarkable individuals and their families work to overcome the difficulties and struggles that epilepsy can bring — and in spite of the seizures, they persevere and lead meaningful lives. Time and again, we receive calls from individuals who are discouraged and looking for ideas to address a problem at hand. They reach out to us to make a connection and gain support. We provide the support they need, and help these individuals leverage that support and encouragement to change their situation.

Dear reader, know that you are not alone and there are others who care about and share your experiences.

To learn more about the Epilepsy Association and the services we provide, please visit our website, our Facebook page or our Twitter feed.

~Kelley S. Needham