Epilepsy Talk

What were your most formative moments? | July 13, 2020

For me, it was three different stages, ages and issues…

1. Growing into my own skin…

Being a pre-teen or a teenager is, to say the least, no picnic. Add the layer of epilepsy on top of it and you’ve got a disaster waiting to happen.

But once I started to mature and grow more comfortable in my own skin, I could accept who I was, that epilepsy was part of that, and eventually become an advocate myself.

2. Going from “ugly duckling” to “swan”…

Every day of my life, my beautiful mother told me (or reminded me) how fat and ugly I was.

Well, yes. I was quite the chubbette at ten. But, by fourteen years old, I was 5 feet, 10 inches and 125 pounds with long, long hair (which I lost, thanks to Dilantin).

I think you get the picture. Unfortunately, I didn’t, for decades.

3. The biggest discovery and life-changer was knowing I was worthy of love…

Lots of people — family included — talked the talk. But they didn’t walk the walk. Especially when my old friend epilepsy stepped in.

But there were those loving, loyal few who filled my life with joy. And made me feel beautiful — all over.

And then came Arthur. A flaming seizure on our first “date” and wedding bells 366 days later. He is my friend, my partner, my love…still 40 years later.

And they all lived happily ever after.

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  1. First was the day my co-worker brought me a St. Louis newspaper article about an epileptologist. I needed someone who meant business instead of the local neurologist who just prescribed you pills and that was it. He was not only a doctor but a close friend who I hated to see retire last year. I will never forget how much help and encouragement he gave me. The words I won’t forget are when he told me before surgery that I had a 95% chance of better seizure control, 85% chance of total control ON medications and a 70% chance of total control OFF medications. I made it to the 70%.

    A few things later involved family. The week I had surgery we had the worst weather you could ask for: sleet and snow and just plain COLD. Since I live 45 miles from the hospital, it was hard to get there. When I needed something and knew my wife would have a hard time driving, I called a cousin I hadn’t seen in a long time and asked if she would help me because she lived 3-4 miles from the hospital. It felt like I just hung up the phone and she was there.

    The day before I was being released I got a visit from a brother I was having communication problems with. Even though his first words were “Are you nuts?”, it was the day everything opened up and we started a closer relationship.

    Now I have a series of moments. By that, I mean I had a goal of going five years seizure-free after surgery because it would top my longest string before that (my four years of high school). I made it to five then told myself I was going to celebrate EVERY five years without a seizure. Since this is year 20, I’ll be celebrating again.

    I realize everything I’m saying relates to my surgery but when you see what I’ve seen, eventually the surgery is all you want to remember.

    Liked by 2 people

    Comment by Ed Lugge — July 13, 2020 @ 12:23 PM

    • Ed, you are truly blessed. To have had a good and caring neurologist. To have an open heart. And for the love of such a wonderful family member.

      Congratulations on your success and five years seizure-free. Let’s hope you can extend your record!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — July 13, 2020 @ 12:29 PM

      • Thank you, Phylis.

        I know how you feel about that partner. Next week is 41 years with my partner and since she deserves it, I’m just glad I only made her put up with my seizures for half of that time.

        Liked by 2 people

        Comment by Ed Lugge — July 13, 2020 @ 4:40 PM

  2. Hey, Ed. I’m right behind you at 40 years.

    Proof that there is life and love beyond epilepsy! ❤️

    Liked by 1 person

    Comment by Phylis Feiner Johnson — July 13, 2020 @ 6:48 PM

  3. GOOD FOR ED!! KEEP IT UP!!!!!!! Also GOOD BOTH OF YOU!! Lol 😂 I’m (if you can’t tell A LITTLE COMPETITIVE) lol 😂 so IF YOU TWO CAN GO THAT LONG SO CAN I/ME AND MY HUSBAND!! 🙏🏼🦅❤️😘. I ALWAYS SAY “my FAVOURITE ANNIVERSARY is our ILL-LEGAL one 😁😘” (October will be 28 years), but our LEGAL ANNIVERSARY is in 14 DAYS!! And YUP I COMPLETELY AGREE WITH THE TWO OF YOU (SAVE THE BEST FOR LIFE!!)!!!!!!!” 😘🙏🏼🦅❤️😘

    Liked by 1 person

    Comment by Kathy S.B — July 14, 2020 @ 1:21 PM

    • Good luck, Kathy! If your husband shares any of that optimism, it’s just a matter of time before you join the club.

      Liked by 2 people

      Comment by Ed Lugge — July 14, 2020 @ 1:34 PM

  4. THANK YOU ED!! I’m not sure if it’s necessarily my husband, but more my neurologist!!!!! Apparently the nerves in my neck are injured from a fall (which resulted in a major concussion) and he claimed the only thing that would help was what he already tried!! IT DID NOT WORK AT ALL!!!!!!! It was a drug called “toperimate”. As for the surgery according to my neurologist nothing else will help me (I HAVE REQUESTED A NEW FEMALE NEUROLOGIST/EPITOLOGIST)”.

    Liked by 1 person

    Comment by Kathy S.B — July 14, 2020 @ 1:45 PM

  5. Yes I can relate to this also. Now that I’m a senior I still have my seizures and other health problems. Now I’m even heavier,ever. Anyway I thought the other day I read in a post about Keppra. That it’s not good ,I just began kidney and liver issues . The dr for my kidneys seemed concerned I’m taking this med.
    Any comments? Thanks

    Liked by 1 person

    Comment by Holly Mann — July 14, 2020 @ 3:05 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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