One Year Seizure-Free on a Milestone Birthday
Last updated: August 2023
Ever spend much time wondering what is your very first memory? My long-term memory is exceptional even if my medications aggravate my short-term. But since many early memories include my sister who's 3 years younger, I'm sure that my first memory is the one I have doing cartwheels like a circus clown from the top to bottom of the tall hardwood staircase in our old-fashioned home.
I remember bawling and seeing my parents hovering overhead, appearing as they would through a fish-eye lens. I'm sure that is my first memory, as they told me I was just 2, and that's the concussion that started my life-long epileptic odyssey.
It's been a bitter-sweet teasing by my 13-year old daughter for the last 5 years that our favorite cinema offers a discount to "senior citizens" over 55 – so we could go to the movies more frequently. Boys on her baseball team wondered why her grandfather took her to practice! Actually, her mom dropped us both at the park and left, since I haven't driven for 32 years.
The best birthday milestone ever! 1 year seizure-free
Coincidentally, my 60th birthday was the same date as being 1 year seizure-free, so that playful girl said that since she'd bake a cake for the occasion – for the first time in her life – it had to recognize April 25, 2023, for both reasons.
Since my seizures began, America's had 12 presidents, astronauts learned that they could survive longer than a day in space, America's fought 3 wars, and low-cost airliners went from props that carried a couple dozens to behemoths that carry over 600. And epilepsy went from being a shameful embarrassment that could only be helped by the barbaric phenobarbital pill.
Perceptions of epilepsy have changed
Only 5 decades before me – barely seconds in time since Hypocrites first wrote about epilepsy –President Teddy Roosevelt swore that if voters learned of his affliction, they'd balefully reject him for being a demon! An untrue myth.
I know that many of my readers who are either new to the epileptic community or have had it several years. You're angry, aggravated, frustrated, and scared that more isn't being done about epilepsy. Most people don't know the word "epilepsy" until it befalls them, so we have to take heart that it's not a matter of people not caring.
Epilepsy's been a part of every decision of my life
It's been a factor in every major decision of my long life. Decisions like choices of schools? Careers? Would a woman marry me? Would I be a good father? Can I afford going on a medication if it interferes with purchasing a house? Can I drive? Should I stay on a medication that is making seizures less frequent but makes me talk like an idiot or keeps me too drowsy to interact well with people? Or even have suicidal thoughts?
Then there are the more abstract decisions: Is the amount of onions put on a restaurant's cheeseburger worth triggering a seizure? Can a neighbor take me on an errand when it interferes with my wife's schedule? How do I adjust my dosages when I'm flying overseas? Should I wear a face mask to mow the yard on a hot day to protect my breathing? Probably one of the most exasperating decisions in recent years is how to arrange my office so that blinds on the windows don't trigger seizures!
I have epilepsy, but epilepsy doesn't have me
I've known plenty of bitterness, loss, aggravation, and desperation that you've felt in 1 way or another. However, I adopted the idea that I have epilepsy, but epilepsy doesn't have me. That means that friends have envied my chances to live and work overseas, my election to be a delegate in a political party's national convention, my time spent on the staff of a leading TV soap opera, my time as an educator, and the many friends I have made.
Excited for treatment advancements
If you're annoyed by the slowness of medical advancements for epilepsy, I'm actually excited. No one thought of brain surgery when I was growing up, and epileptology hadn't even been identified as being a part of neurology. And just in the last couple of decades, surgeries have gone from changing personalities because of the uncertainty where the bad neurons were to now having fiber-optic laser techniques that can be an outpatient operation.
In only the last 3 or 4 years, SUDEP (Sudden Unexplained Death by Epilepsy) has become a buzzword in the epileptic community. Let me say that "in my day," SUDEP was just as rampant, 1 death per every 1,000 people with epilepsy. But medics and doctors assumed people were killed by cardiac arrest or suffocation, regardless how young and healthy they’d been – and closed the book on it!
Technology advancements for seizure control
Smart watches and sleep monitors were inconceivable, let alone the practical service they provide today.
Just this week I've talked to a family whose 2 epileptic children had stem cell procedures that has made them seizure-free and without the need for medications after 4 years! I've met a woman who made the connection that getting her back straightened after a fall in a hospital – caused by epilepsy – reduced her from 20 seizures a month to 1 every 3 months.
What's next in my lifetime?
I fantasize that if such things had been known to my parents, I very well might have been able to fly to the moon on NASA's Artemis rocket rather than be a TV onlooker.
However depressed or bitter you are right now about the hardships of having epilepsy, please share my excitement at how things are changing. I truly believe there is a purpose in every thing that happens to us.
If you keep faith, you'll be one of those who proudly declares, "I have epilepsy, but epilepsy doesn"t have me!" I wonder what I'll have to share with you about epileptology on my 85th birthday?
Since being diagnosed with epilepsy, has your memory been impacted?