But You Don’t Look Sick: The Real Life Adventures of a Child Epileptic Into Adulthood

Epilepsy is a condition that affects nearly three million Americans. It is one of the most common neurological conditions that disrupt the normal connections between nerve cells in the brain. That disruption is referred to as a seizure. There is no age, race, or ethnic connection. Common causes of the condition are high fever, low or high blood sugar, and concussion.
I had my first seizure when I was seven years old. My memory of those early years, I humorously refer to as my unconscious years, are filled with clouded memories of doctors’ offices, waking up in emergency rooms, and waking up in nurse’s offices.
I had one physician. Dr. Martha Lusser, MD. She was the only pediatric neurologist I ever saw. She put me on Tegratol, Dilantin and Phenobarbital. This is the reason I feel many of the years as a child felt like a blur. They were like a slide through time. It wasn’t until I was a teen did I form and keep many memories of where I was and what was going on.
Dr. Lusser was one of the only pediatric neurologists in the Greater Allentown area in Pennsylvania at the time. She was very clinical. I remember her being very matter-of-fact, cut and dry. I also remember my mother going head to head with her on more than one occasion.
For years, at home, it was the same thing. “Michael, did you take your pills?” If I had a dime for every time my mother said that to me as a child, I would be able to retire a rich old man. My memory was very poor when I was young. Memory loss is a common side effect of the anti-seizure medications prescribed to me by Dr. Lusser. Some of the medications controlled seizures well. Some did nothing. Some made my head spin or knocked me out cold. One that worked well was carbamazepine. I take to this day. We explored the gamut of treatments of the time. “That is all you can do.” I was told. Manage the disorder with seizure control medications. Twice a day, every day.
Don’t forget, all the while, I was trying to fit in and navigate the tenuous terrain that most refer to as middle school. You know, the battleground where you try desperately to just to be cool, be liked. Try fitting in when everyone you associated with was afraid of you or thought you were a freak. They all saw me have a “fit”, I hated that term, at one point or another. I’d fall on the floor, walk into a hallway wall or simply not respond when addressed. Ya, I fit in. Not! I would wake up in the nurse’s office hours later and Dad would pick me up, take me home, and put me to bed. Those were the people that knew. My classmates. My mother made it very clear to the school and every teacher I had all through middle school. Some got it. Some didn’t. Some didn’t give a shit. “Allowances for one have to be made for them all.” Walter Valenta, a fifth-grade teacher who thought it would be a good idea to use corporal punishment when I “forgot” to do homework. Nine times out of ten, I had had a seizure, slept the rest of the day into the night before, and forgot I had homework at all. But these are not issues he had to worry about. Asshole!! Don’t get me wrong. I do not hold this against anyone I grew up with. Keep in mind, this was the 80’s. It wasn’t their deal. They didn’t get close enough to understand. Or care enough with maybe one exception.
To look at me then, I was a normal, adjusted child that was as geeky as the next boy. Some of my teachers even questioned there was anything wrong with me especially those that had me later in my school career when the professionals had it knocked. Eventually, the bloodwork, the EEGs, and the hospital visits paid off. I have been seizure-free for at least eighteen years now. I am in my forties now and as long as the medication is taken, the seizures are controlled.

Today Is My Birthday

Today is my 49th birthday and aside from work, I will be spending this evening with most of my children. I have two little ones but most of my children are grown and some starting their own life.

There comes a time in a man’s life when reflection is something that just happens. It’s nothing you look for or search out, you will be sitting there during your free time, and the thought will come to you. For me, the subject matter varies from pride in what you have done, the accomplishments you have achieved, or sometimes, regrets.

We all live through our experiences and either learn from them or not. I hope I can say I have learned from my mistakes and I have made plenty of them. But they love me anyway. They accept me for who I am and what I stand for. I think I can say the truth, honestly, integrity. Those are probably in the top five. I think my children can see those in me. Pride comes from what your family and friends see in you.

So, thank you ahead of time for your well wishes.

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I just wanted to take a moment to say thank you to all of you who take a moment of your day to read the material that comes from my head.

When I started this journey, WordPress was to be used solely for my enjoyment of writing and creativity. I never would have thought in a million years that someone else would want to read my stuff. But there is. Thank you.