Epilepsy Talk

If You Didn’t Have Epilepsy, How Would You Change Your Life? | June 27, 2011

I have to admit, I’d still be a writer. Writing is my passion, it’s what gets me up in the morning and I couldn’t imagine living without it.

Yes, sometimes I can’t find the keyboard, sometimes I can’t think straight and sometimes, I can’t concentrate.

Be since I’m a freelancer, it will always be there, waiting for me.

Others aren’t as fortunate, I know. They want to be in the military, the medical field, teach, go to college or graduate school, be an engineer, work in retail, DRIVE…the list is endless.

But if you did have the options — without epilepsy haunting you — what would you choose to do?


  1. If I didn’t have epilepsy, I would still write. I wouldn’t have published a book about epilepsy, LOL, but I hope I would have put together a book of some of my other poems. I would have taught longer. I would love the fact that I could drive whenever I want to. I would not worry about a seizure corrupting a day.
    I believe I would feel different without having to be on the drugs that slow me down.

    It would be great. But these are the cards that were dealt to me, and my husband and I have learned to manage them the best we can.


    Comment by Maggie — June 27, 2011 @ 3:09 PM

    • I think you’re managing just fine, heroically, in fact. How many of us can attest to having a book in print and on sale at Amazon, Borders, and Barnes & Noble?

      I, for one, am very proud of you!


      Comment by Phylis Feiner Johnson — June 27, 2011 @ 10:30 PM

  2. Phylis and Maggie, I have a question for you 2(together) about writting.
    But I’ll ask about it after I respond to the subject.

    It’s impossible to know what I’d be today if epilepsy hadn’t been a restiction in any of my lifestyle decisions, It depends on many aspects of a persons life, from childhood to adlescents.
    I’ll give some examples of my own:
    Because of epilepsy:

    > I was treaded as a failure and looked down on as the “blacksheep” of the family, by most everyone ((exept my Mother and those that didn’t know I was epileptic)) and to a point I started to consider myself as a failure, although I knew I wasn’t.
    –Now that I think about it, I guess that I jumped that freight train and moved thousands of miles away from everyone that knew I was epileptic for a reason, but was unknown at the time–
    Anyway.. I could go on and on about how different my life would/may have been if epilepsy hadn’t played a roll.
    As a kid, I use to lay on my back under my wagon and play with the rusted scews, as if I was a mechanic working on a car.
    Today: I’ve been a certified mechanic for the last 25+ years.

    Also, As a boy, I had a crush on a girl in my class. I didn’t think I was good enough for her, so I never made a pass.

    In 2008, she left a message for me on “Classmates.com”. I never found the message until last year (2010). We got in touch on Facebook.

    I feel that if I hadn’t had epilepsy, We would have married and I would stayed in my hometown in NW Michigan and been a mechanic there.


    Comment by mkfarnam — June 27, 2011 @ 5:11 PM

    • Mike, I tried to answer you on my cell phone, but apparently, everything got erased. So much for “smart phones!”

      When I was diagnosed with epilepsy (age 14), I was treated like a pariah. No one dared say the “E” word. Even though my step mother was a shrink and my step father was a surgeon.

      They all agreed that I’d never amount to anything. A lovely vote of confidence.

      To read all the gory details, go to:


      Comment by Phylis Feiner Johnson — June 27, 2011 @ 10:37 PM

  3. Phylis, which thread would be most appropriate for me to post that question to you and Maggie about “Writting”?


    Comment by mkfarnam — June 27, 2011 @ 5:23 PM

  4. Hey, mk, I live in Michigan too, southwest corner, on the lake. Where do you live? Traverse City?

    And what was your question about writing? Nice to be connected with another Michigander. 🙂


    Comment by Maggie — June 27, 2011 @ 5:25 PM

  5. That would be easy for me. I was baptized as a Jehovah’s Witness in 1969. I would be able to go to all of the meetings. I can still listen to the meetings by speakerphone on the telephone, for those that I am to sick to go to.

    I would also have been able to do more in telling others the truth about the Bible.
    That is my passion, educating others about the truth of the Bible.

    I am still able to do it over the Internet. If anyone wants to have a Bible discussion my email address is: brown.ruth@live.com You can ask me any question about the Bible or my beliefs that you want to.


    Comment by ruth brown — June 27, 2011 @ 5:27 PM

  6. mk, I’m going to just be bold and tell you that I’ve written a book of poems about living with epilepsy. I could tell you how to get it if you should happen to be interested. Phylis has been generous in promoting it for me.


    Comment by Maggie — June 27, 2011 @ 5:27 PM

  7. When I was in 3rd grade I wanted to be a nurse my mom said that was nice.
    When I was asked to leave a boarding school which my parents went to I thought. I wanted to be like them. I wanted to be good Christian Scientist.
    I changed my religion when I went to college. I went to a Neurologist in college. I had surgery twice. My parents realized that this would help and I had a VNS.
    If I had done what I wanted I have talked to my friends who I know from elementary school. Their lives are interesting and challenging too.

    I wanted to be a Nurse or Weatherman. I ended up doing the best I could do. I was doing EEGs, evokes and listening to wonderful people!


    Comment by Toni Robison — June 27, 2011 @ 6:09 PM

    • I’d hardly say you failed, although admittedly, the chips were against you. 😦

      But, at least there were all those wonderful people…


      Comment by Phylis Feiner Johnson — June 27, 2011 @ 10:48 PM

  8. Toni, that is important that you were able to get education and work. I got the education but was never able to get employment. I was able to get work as a CNA, but I was only able to hold it down for 2 weeks. The nurse that did the hiring knew that I have epilepsy. She hired me.

    I had too many seizures to hold down the job. The nurse never fired me, I had to quit. I was having to many seizures to go to work everyday. I was only able to work every other day. I quit because I could not give my job, my whole attention. My seizures were that bad.

    Toni, why did you change your religion? What religion are you today?


    Comment by ruth brown — June 27, 2011 @ 6:55 PM

  9. I don’t have epilepsy, I just started having Grand Mal Seizures at age 34 so now I’m taking Keppra to prevent a 4th episode after refusing to take drugs the past 9 months without having an episode…the last one was the worst so my Nuero scared me into taking the Keppra drug finally. He says if I take it 3-5 years I will probably be fine and seizure free after that and can stop the drug, I sure hope so. So I’m still driving and doing all I did before. I’m sorry for those that have limitations due to this condition, I guess we could all be much worse with severe mental disabilities so we have to try to keep positive and look at what we have vs. have not. Good luck to everyone, and peace.


    Comment by Aje — June 27, 2011 @ 7:22 PM

    • Aje, welcome!

      That’s a wonderful way to look at things.

      But I think while you’re on Keppra, you should keep a daily diary…of your sleep patterns, what you eat and when, your daily activities (including emotional upsets), any seizures, how they feel and the duration. This way, you can track any side-effects and keep on top of things.

      Keep in touch and let us know how you’re doing.


      Comment by Phylis Feiner Johnson — June 27, 2011 @ 11:25 PM

    • Hello Aje,

      Questions? What did your DR call your ‘episodes’? Seizure Disorder? That’s the ‘New’ Label Docs have put on Epilepsy. Fact is: 2 or More seizures, of any kind = Epilepsy!

      So, How long have you been on your current dose of Keppra? Phylis is Rite. You need to start a Journal. Patterns will point out side effects &/or Triggers.

      How long have you been Seizure-free? A Positive attitude. Refreshing in a ‘Newbie’. 🙂 Keep It Up! 🙂 Also, keep Educating yourself about Epilepsy. There is a Lot to Learn. 🙂

      Love Candi


      Comment by candi — June 28, 2011 @ 4:23 PM

      • Yeah I think my Dr. called it Seizure disorder, he does not think I’m an epileptic or have epilepsy, or that I’ll always have seizures for the rest of my life and need to be on meds forever. He’s seen many cases like me, no seizures all my life till mid 30’s, only get a few sporadically, take Keppra for 3-5 years and then try slowly coming off Keppra and most patients remain seizure free after that. Sounds pretty hopeful for me and I still feel lucky after learning how much this has affected others for most of their lives, especially the medications, sad.

        I’ve only been on Keppra just over 2 weeks, 250mg twice a day, don’t notice much effect or side effects so far. He wanted me to take 1000mg per day but I talked him down to take less since I don’t like pharma drugs.
        I’ve only had 3 episodes in nearly 1 year, so it’s pretty difficult to detect a pattern. I eat and have a pretty consistent lifestyle so not much notes to take for me. If the seizures continue or increase I will take notes and give this issue more attention, otherwise I don’t really think about having seizures, I don’t worry, I don’t feel or consider myself an epileptic. I move forward with my life and keep pretty occupied most of my time.

        Grand Mal seizures bother me, especially when I bite my tongue, but going to the ER bothers me even more! That’s why I’m taking the Keppra, to avoid more unpleasant experiences with the ER and whacked out medical system. They make it worse when I go to the ER. I’ll keep seeking answers from different healers and alternative docs around the globe until I can find some more idea’s of my cause.

        I have been seizure free since May 11, 2011, before that was August 4, 2010 so 9 months is pretty long, especially without medication. Hence I felt confident and strong I could conquer this issue by reducing stress and improving my good health even further, but the last episode was pretty severe. Since I hadn’t experience any noticeable brain damage or decreased abilities, I never took seizures very seriously, felt somewhat invincible. Then my neuro told me about the young men he knew that experienced SUDEP and told me to look it up…so I’m taking it a tiny big more serious now. Thanks for reading!


        Comment by Aje — June 29, 2011 @ 7:16 AM

  10. Welcome Aje,

    I am on Keppra and I have to take Vitamin B Complex everyday. The neuro told me that. Hope to see more of your posts, here.


    Comment by ruth brown — June 28, 2011 @ 1:59 AM

  11. Hi Everyone,

    How are you?


    Comment by ruth brown — June 28, 2011 @ 2:52 AM

  12. I was starting on a New Journey. As a single Mom, I had been a Dancer for 4-5 yrs. I joined the AF so I could Learn Something that would enable me to better support myself & my Daughter. I was Unaware of a Previous Seizure that my Daughter had witnessed. So, Imagine my surprise when I woke up in a Hospital. Seems I collapsed during morning Warm-ups. Full Convulsion. They kept me for 3 weeks & released me the same day my squad graduated from Basic Training. But, it wasn’t the Epilepsy/seizures that disrupted my Life & Goals. It was the Meds. I was placed on Dilantin, first. HORRIBLE Drug! For Me! All thoughts of Bettering myself went out the door. Just surviving/coping was Hard enough. 😦 I was in no condition to go to school. 😦

    It took over 10 Yrs to get out of my ‘Funk’, find a med that worked & become a Housewife & Mother. My Son was born 17 yrs after my daughter. 🙂 🙂 DRS had my seizures under control just B4 I conceived him. 🙂

    W/out seizures I would have remained in the AF & realized my dream of being a Counselor/psych for soldiers returning from War. W/ Epilepsy, I will continue to support/advise/counsel those w/ Epilepsy. Which in my opinion is how Epilepsy Changed my Life for the Better. 🙂

    Love Candi

    P.S. Ruth, I am doing Just Fine, today. 🙂 HUGS!


    Comment by candi — June 28, 2011 @ 4:45 PM

    • Candi, what a heartbreaking story. But I must admit that the Airforce’s loss was OUR gain…not to be too selfish! 🙂


      Comment by Phylis Feiner Johnson — June 28, 2011 @ 11:26 PM

  13. Dilantin was a horror med for me, too, Candi. I got Stevens-Johnson Syndrome from it when I was 6 years old. My parents were told that I was going to die.
    I looked so awful that they only came to visit me when I was having a treatment. I was all covered up in bandages and it was wet. It had something good in it, because I am still here.


    Comment by ruth brown — June 28, 2011 @ 7:56 PM

  14. To our great pleasure!!!!


    Comment by Phylis Feiner Johnson — June 28, 2011 @ 11:27 PM

  15. If I were still a kid with epilepsy, there’s no telling how my life might have been different. Getting a driver’s license would have probably made the biggest difference. As it has turned out, however, I’ve had a very full life despite having epilepsy and going through the trials it has caused. I’m retired now after living a full life. I’ve had a wonderful wife for the past 38 yrs. and worked in a very fulfilling profession. I’m sure that if I didn’t have seizures life would have been much different – very possibly not as good as it has turned out. I’m also glad that my parents lived long enough to know I was doing fine despite the epilepsy.
    Not knowing the future, is a huge part of life that we don’t think of.


    Comment by Rich Snow — July 13, 2011 @ 1:08 PM

    • Yup, life throws us all kinds of curve balls…but you seem to have a 100 per cent batting average!

      Good for you Rich! What a terrific way to look at life and live.

      Obviously epilepsy didn’t define your fate…you decided who you were and who you wanted to be.

      Hats off to you. And great admiration, too.


      Comment by Phylis Feiner Johnson — July 13, 2011 @ 2:26 PM

  16. I think that the only way this could be answered correctly is when a person has goals and plans set for for the future, and then was diagnosed with epilepsy or an illness that interferes with or restricted most of his abilities to carry through his goal.

    One example:
    “driving restrictions” can block many possibilities in a persons life.

    Someone with epilepsy at a young age can set their goals accordingly.

    I was on my own as a teenager convinced as a kid that I was a failure. One thing I didn’t have nor did I realized I needed it was “support”.
    I didn’t even realize at the time, but I came to a crossroad at the age of 17. When I decided to jump a train and head to California instead of back up to Michigan, I was leaving a negative life behind to start a new one.
    I still looked at myself as a failure, but without the assurance from others that I was right.
    In 1985 I met my wife. She gave me the feeling that I had a reason to live and make something out of myself.
    From there thing started improving.


    Comment by mkfarnam — July 28, 2011 @ 4:58 PM

    • Similar to me, Mike. I think that Arthur really validated who I am and gave me the confidence, reassurance and love I needed to succeed.

      We are indeed lucky people.


      Comment by Phylis Feiner Johnson — July 30, 2011 @ 2:37 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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