Epilepsy Talk

If You Didn’t Have Epilepsy, How Would You Change Your Life? | August 10, 2018

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?

To subscribe to Epilepsy Talk, simply go to the bottom of the right column, enter your email address and click on “Follow”.


  1. I would do something in the entertainment business . Or join the military .


    Comment by Carmen Heinze — August 10, 2018 @ 10:11 AM

  2. I’m not sure what I would do. I’ve had intractable, idiopathic epilepsy for almost 15 years. And have been considered disabled for the past 7 years. Painting has been very therapeutic to me, and I’ve really become passionate about it. I wouldn’t say that having epilepsy and being disabled is a blessing, but I probably never would have discovered this passion if I was able to work a normal 9 to 5 job. I wish I was seizure free, but I try to find the happiness in my situation.


    Comment by kellyfalk — August 10, 2018 @ 10:25 AM

  3. When you lose your drivers license your life changes completely you either work from home if your able to do this or and become self employed . I would not be in the line of work that i’m in thats for sure if i didn’thave the monster epilepsy which is disgusting I think i just work up today in negative mood dealing with this for more than 40 years and the meds don’t control it.


    Comment by elena — August 10, 2018 @ 11:35 AM

  4. I would love to drive again and I would love to be a cook at a nursing home.That’s what I did before I started having seizures and was diagnosed with epiilepsy.Because now I am disabled.But I’m just so thankful to my wonderful husband for all his care and understanding. And I am so thankful to God that I wake up everyday .

    Liked by 1 person

    Comment by Angela carter — August 10, 2018 @ 11:55 AM

    • I’m so sorry you can no longer to be cook in a nursing home. That must have made you feel so good.

      But glad you have an understanding and caring husband. That is a blessing in itself.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 1:01 PM

  5. Phylis Feiner Johnson, even if I did not have Epilepsy, I would very likely not change too many things about my life. Yes, I would much prefer quieter environments to loud environments. However, if I had the ability to do so on my own, I would go out and about and maybe pursue a college degree or get a job, that is if meaningful employment could be found.


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:17 PM

  6. Phylis Feiner Johnson, even if I did not have Epilepsy, I would not change too many things. Quite honestly, I am more inclined toward a quiet life in a lot of ways.


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:29 PM

    • I’m glad you are content with your life. A blessing in itself.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 1:31 PM

      • Phylis Feiner Johnson, I do not mind being around people, however, the number of people is the issue that I have. A small group of people is one thing. A larger group is a different matter.


        Comment by Jeffrey Liakos — August 25, 2018 @ 8:02 PM

      • There’s something to be said for the intimacy of small groups as opposed to the feeling of being lost in large ones.


        Comment by Phylis Feiner Johnson — August 25, 2018 @ 9:52 PM

  7. WOW !! If a person could go back to RWD <<<< the years & say NO MORE SEIZURES after age 15, then many things I could had done that I was denied those chances from ever proving what I could had done. Things like in sports being in the MLB, NBA, or PBA since that was the sport I always had a real passion for, since having my 1st bowling set at age 3 or younger. I still want to bowl a 900 series & there is no room for mistakes in doing that as in 2 balls a frame. Leagues starts in 2 weeks, but besides that, I thought the neurologists who were treating me in the 1970's kinda made me want to be one because they were doing nothing then for me, as I thought I would be able to treat myself better if I were a neurologist. Later I learn how the body is the HOLY SPIRIT OF JESUS CHRIST, and it is not to be abused. That's what's been going on with my brain for over 57 years now, & no end to seizures seems to be in sight, no matter WHAT they next option a neurologist says might need to be done like ASAP for them, because of the $$$$$$$$ they can make with VNS, & other devices, instead of trying drugs that never work for some of us. So I say Why not do the simple things 1st, before going to all out expensive ways from devices & drugs that may not work or even make the condition worse ? CBD & medical marijuana I WOULD TRY , but nobody cares to tell anyone who has seizures how much MORE if there is any higher risks that seizures either can or WILL HAPPEN based on the seizure type & the blood type of the person to the drug reactions one can have from having chemical unbalances in the blood brain barrier based on other toxins from drugs & foods alike. But really,, as far as any career goes, anything as easy to do with NO RISK of failure to it like the job VANNA WHITE on TV's show WHEEL OF FORTUNE, which she's has worked IF YOU CALL IT THAT, for over 3 decades & no more skill level was required in all that time. Oh yeah is so much easier now that a TOUCH lights up a letter, instead of turning a box with hand & fingers. How stressful was that on the hands ? With my good ways of using numbers, I know I could had been any sports athletes salary contract agent, as many of them today who have more than several sports players under contract through them, some of those agents with those players make more than all the players combined through out their career.


    Comment by CD — August 10, 2018 @ 1:39 PM

    • CD, personally, I would change very little about my life. What would you do?


      Comment by Jeffrey Liakos — August 10, 2018 @ 1:45 PM

    • CD, I’m sure you would have been a perfect sports athletes’ contract/salary agent.

      What can you do now with your good ways of using numbers?

      Because, that is certainly a talent.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 2:09 PM

  8. Phylis Feiner Johnson, I do not require a lot to make me happy. Just my thoughts.


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:41 PM

  9. Had I not had epilepsy from 5 yrs old, my life would have been so different to the one I have suffered so far. Perhaps I would have been a policeman or a fire fighter, like I wanted to when I was a toddler? Maybe I’d have joined the RAF like lots of my teenage friends wanted to when I was young? But, my perfect job I had aspirations of would be a river keeper. Epilepsy stopped me, like a brick wall. Life is hell some days, but I get through thanks to support from my loving partner, friends and family.


    Comment by billywest1967 — August 10, 2018 @ 1:46 PM

    • What you wanted to be was a noble calling.

      That’s not to say you’re not noble, because you have epilepsy.

      Look at your partner and the friends and family that surround you with love.

      Unconditional love is noble in itself.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 2:04 PM

  10. Phylis Feiner Johnson, you told me that your birthday would be your 65th birthday. I hope that you are blessed with many more birthdays to come.


    Comment by Jeffrey Liakos — August 10, 2018 @ 1:57 PM

    • Jeffrey, I am blessed in so many ways. To be happy in my career as a writer…to have my epilepsy controlled…and last, but far from least, to have a helpful, caring husband, who loves me unconditionally.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 2:17 PM

      • Phylis Feiner Johnson, even if I was able to avoid having Epilepsy, at least having limited dependency on any medication, that would help me in a lot of ways. If you don’t mind my asking, how far back does Epilepsy Talk go in terms of how long you have been operating it?


        Comment by Jeffrey Liakos — August 10, 2018 @ 5:40 PM

      • Jeffrey, I’ve been seizure-free for more than 10 years now.


        Comment by Phylis Feiner Johnson — August 10, 2018 @ 7:00 PM

      • Phylis Feiner Johnson, that is good. How long have you been working on Epilepsy Talk-10 years or longer than that?


        Comment by Jeffrey Liakos — August 10, 2018 @ 7:35 PM

      • I began Epilepsy Talk in 2009.


        Comment by Phylis Feiner Johnson — August 10, 2018 @ 10:14 PM

  11. I would get my dental/medical degree then I would join the military and hook up a medical unit that can take care of our boys that can’t come home to get there teeth done. Yet when not doing teeth be out on patrol working with the women.

    Also have my drivers license and load up my suv and go do long term fishing.

    If I couldn’t be a dentist /medical then I would be a fisherman and have my own boat.

    Thank you for giving me the chance to tell my dreams 😀


    Comment by Bonnie — August 10, 2018 @ 2:32 PM

  12. Without epilepsy?
    I would have gone into the Navy, tried for the submarine branch. Or in overseas missions.
    But I do have epilepsy and must live with that “limitation”. There are certain things I can not do but there are other things I can only do BECAUSE I have epilepsy. When talking to other epileptics. They can’t say,
    “but you don’t know what it’s like”.
    Sorry, been there, done that, got that tee shirt I am not saying that I know it all. I don’t!
    What I am saying is that I have and had many of those limitations and that each limitation was as important to me as any of yours were/are to you.


    Comment by Mark Thompson — August 10, 2018 @ 2:55 PM

    • Well said Mark.

      I’m sorry for your frustrations. 😦


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 3:09 PM

      • I am not frustrated. I’m sorry if I came across that way. I am very content with my life.
        Everyone has limitations, mine happens to be epilepsy. I am not bitter about it. I accept it. It is what it is.


        Comment by Mark Thompson — August 10, 2018 @ 3:19 PM

      • I apologize for the misunderstanding.


        Comment by Phylis Feiner Johnson — August 10, 2018 @ 4:24 PM

    • Mark Thompson, do you ever suffer the harsh postictal migraines that many people with Epilepsy experience?


      Comment by Jeffrey Liakos — August 13, 2018 @ 12:24 PM

      • And how’s for hallucinating, suffocating, chest pounding, disorientating & confusing petite mal seizures, inviting unwanted humiliating public attention in libraries, restaurants, coffee shopes, to only be told you-re NOT welcome anymore?
        Can it be that some of us are NOT accustomed to humiliating social rejection yet or refused to succumb to social stigma?
        In the end, it’s looking like we’re all living, coping & reacting in our own different ways, surviving the adversity we have no control over.
        I’m sorry if I sounded bitter, going out of the main topic of the article, but some of the replies posted in response to the article look like a little bit insensitive to the ordeals some us are still learning to cope & live with.
        With sincere apologies, I wish you the best.


        Comment by BahreNegash Eritrea — August 27, 2018 @ 2:00 AM

      • Gerrie, some people are just complacent, unlike you who is a true fighter.


        Comment by Phylis Feiner Johnson — August 27, 2018 @ 9:16 AM

  13. Like so many others thanks for giving me a chance to express my dreams Phyllis. I just wanted to be a nurse, I started so many times and had to stop. Can’t focus enough and concentrate at their speed. Sad, I think I would have been good for the industry. I’m going to try college one last time. Speech therapy, I just feel so useless now; like I’m not contributing. Thanks for the online link to the colleges.


    Comment by Lee — August 10, 2018 @ 5:15 PM

    • I think you’ve got the stuff, Lee. And what a good, compassionate, speech therapist you’d be.

      Try a course or two online. See where it leads you.

      Who knows? Maybe your dreams can come true!


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 5:31 PM

  14. I would have been working as a political correspondent for The Boston Globe, either in Boston (at least to start) or in DC. I would possibly have been a foreign correspondent. All of that got shot down because I can’t drive. In a way, that is great. I would not want to be in DC or abroad with the climate now. And people don’t respect “the media” the same way now. But at least I would have some respect and an office.

    However, as a freelance writer, and as a person with epilepsy, I have been able to delve deep into community issues. I have met a variety of people I never would have encountered. I have developed an amazing inner strength, which I use to advocate and encourage others.

    This is great because I was always the shy wallflower! Now I can go up to a senator or a mayor and question something. It is because I am not afraid of death. It’s like, been there, done that – twice. If the people need to know something, or if I need to advocate for my needs, I am not going to sit back anymore and be a doormat. Of course, I try to do it in a professional way with the ever-present smile. 🙂 But if I get the pat on the head, the pen and the proverbial guns come out.


    Comment by megambon2164 — August 10, 2018 @ 5:56 PM

    • Oh Mary Ellen, you rock.

      Knowing you as a personal friend, you’re being extremely modest.

      You’re a great advocate, speaker, journalist and voice for those who can’t speak for themselves.

      You have my undying respect and admiration.


      Comment by Phylis Feiner Johnson — August 10, 2018 @ 7:03 PM

  15. Even if I did not have Epilepsy, my personal inclination would be not to change too much about my life. I am more inclined toward enjoying the simpler things in life.


    Comment by Jeffrey Liakos — August 10, 2018 @ 8:04 PM

  16. I wish I could still work cause I sure miss doing that but at least I can volunteer to keep me busy and been doing it for 13 years now.


    Comment by Corina — August 10, 2018 @ 9:26 PM

  17. Thank goodness, my seizures have been controlled for about 50 years. I really have lead very very normal life. The only thing I can say is I would be less afraid of driving holding a small child or infant is scary. Don’t get me wrong I’ve had a few seizures. I guess I could say I would be less fearless.

    Michele Lipenta

    Sent from my iPhone



    Comment by Michele Lipenta — August 10, 2018 @ 11:11 PM

  18. Successfully building start up computer company from just Engineering schematics into high tech market, I miss the eager competition, exciting challenge, professional interaction, race against time & deadlines, putting in long hours into the field of wireless network industry, I enjoyed & treasured for most of my life, before seizures & the side effects of medications became unpredictable predicament, making it difficult to manage & memorize every detail of everyday activity.
    While I feel Epilepsy robbed me of the professional career & social relations, once I was pleased & proud of accomplishing & enjoying, I believe I’ve come a long way to overcome the shock, learned to adjust & accept the outcome of living under shadows of Epilepsy.
    Grateful to have lived long enough to learn a whole lot about life & my strength to overcome adversity, I decided retirement is the best option to live out the rest of my life.
    Looking back, I feel I accomplished my purpose in life, despite some challenging struggle with Epilepsy.
    Wishing you all the best.


    Comment by BahreNegash Eritrea — August 11, 2018 @ 1:03 AM

    • Oh Gerrie, you’ve accomplished so much — both in the computer field — and in the life’s lessons field.

      To have successfully navigated and been an innovator in the wireless world deserves applause.

      And to bow out with grace and a newer sense of self knowledge and understanding is fantastic.

      Gerrie, as a person, you are so wonderful in so very many ways.

      Sometimes I wonder what would have happened if you didn’t have to slay the epilepsy dragon.


      Comment by Phylis Feiner Johnson — August 11, 2018 @ 9:30 AM

      • Phylis,
        Thank you for your inspiring & encouraging remarks.
        Your information & support has been indispensable, in my education of learning the highways on how to cope/live with Epilepsy & overcome the hardships of my seizures.
        Obliviously, with out Epilepsy I still would have been doing the same thing I love doing for most part of my life, working in computer industry, chasing the latest invention in wireless network products.
        But being realistic enough to accept my limitations due to seizures, it’s about time for me to take care of myself, putting aside the pursuit of professional career I’ve been taking care of, for most of life.


        Comment by BahreNegash Eritrea — August 12, 2018 @ 6:54 AM

      • Please always take good care of yourself Gerrie, your presence means so much to me.

        You are a joy and an inspiration.


        Comment by Phylis Feiner Johnson — August 12, 2018 @ 10:05 AM

  19. Oh Phylis! Your friendship and support have meant so much to me and have strengthened me when I felt I was standing alone. My other goal, had I not had epilepsy, would have been to be a professional singer. I had sung from childhood through college and beyond – four choirs, four vocal parts. I love high soprano! That’s why the vocal cord paralysis has been so disturbing to me. I can’t even sing in church choir now! I went from Mariah Carey to Bonnie Tyler! And I could have gone to France for free a few weeks ago to SING and do PR! But I digress.

    I was afraid of the flashing lights, the money, the commitment, the driving, the time onstage, etc. But I can still belt them out in the shower! Love you!


    Comment by megambon2164 — August 11, 2018 @ 10:38 AM

  20. I was going to be a police officer just had 1 examen left ..then I was in the academy ….but never made it that far …started at 20 yrs 😥


    Comment by Barb — August 11, 2018 @ 10:39 AM

  21. That’s awesome, Phylis! I always tried to make my writing stand out. Even though it’s “just journalism,” I try to use color, alliteration, etc. I try to incorporate sound and image to create a true picture – depending on the deadline. 😉 I was never sure whether the degree should be “of Science” of “of Arts,” because I consider writing to be both. No one knows how many hours I put into an article, as you know. Especially where you have been a writer for so long, you truly “get it.” And you help others with your voice, which is a gift.


    Comment by megambon2164 — August 11, 2018 @ 11:16 AM

  22. My life long dream was to become a pediatric nurse and work with more so disabled children. Even though I’m disabled because of my epilepsy, I do have friends with disabled children that I do get to still give love and affection too.


    Comment by Michelle Dotterer — August 11, 2018 @ 11:53 AM

    • So, in a way, you are “nursing” them.


      Comment by Phylis Feiner Johnson — August 11, 2018 @ 12:13 PM

    • Michelle Dotterer, even if I did not have Epilepsy, I would change very little about my life. Personally, I enjoy the simple things that life has to offer.


      Comment by Jeffrey Liakos — August 11, 2018 @ 12:19 PM

  23. To tell you the truth, Phyllis, I don’t really know. My Epilepsy started back when I was 9 years old, a time when a person just gets up and goes to school and just wants to be around friends. My friends, back then, became afraid and didn’t want to be around me. I’ve always thought that the Epilepsy showed me who my real friends were. It also got me interested in psychology, but because of the side effects of my medications, I had to drop out of college just before I had enough credits to get a Bachelor’s degree in Sociology.
    But when I think about it, I always had fun playing the piano. I would just sit down, and make up a song as I went along.


    Comment by David Jensen — August 11, 2018 @ 1:28 PM

  24. I would like to be a librarian or a lawyer


    Comment by Brenna Anderson — August 11, 2018 @ 1:28 PM

  25. Reading books is,my passion knowing unknown things beyond books have become a hobby journeys to new places and other options available beyond our knowledge has become a hobby
    Nature is a good reliever of our pains and sorrows


    Comment by Yusuf — August 12, 2018 @ 9:06 AM

    • Knowledge is a wonderful way to live. Pursing what we don’t know…learning more about what we do know. And taking us to new places.

      Hats off to you Yusuf!


      Comment by Phylis Feiner Johnson — August 12, 2018 @ 10:09 AM

  26. If I never had Epilepsy, I would be able to do things that I cannot do otherwise at this time. Having said that, I would probably just live my life in peace and quiet.


    Comment by Jeffrey Liakos — August 12, 2018 @ 11:34 AM

    • I’m glad that you’ve chosen a lifestyle that makes you comfortable.


      Comment by Phylis Feiner Johnson — August 12, 2018 @ 12:18 PM

      • Phylis Feiner Johnson, I do not need a lot to make me happy personally. Just being with friends, family, surrounded by nature-that makes everyday good.


        Comment by Jeffrey Liakos — August 12, 2018 @ 4:24 PM

  27. Hello Phylis, such a coincidence right now I’m facing raw facts about myself. I started having grand mal since 5 years ago, while I was driving a vehicle. Fortunately nobody was hurt (just my car) and I got diagnosed with temporal lobe epilepsy… I was doing my master degree research in the field (I’m a biologist) and couldn’t imagine then, how my life would change at short to medium term. When I finished my degree, I started working at wind farms, however, I couldn’t drive vehicles anymore, so I had always to be with someone else, who always was afraid being with me because of my condition, so I started to feel alienated. Anyway, payment was low and I was far away from my family, so I decided to move in with my parents again and started working as a freelancer (web design) and after a while, I started studying a new career (electric engineering, based on my condition). Last year there was an earthquake in my country which affected the university buildings, so I had to stop studying indefinitely. That was the lapse when they called me from a company to work for them at wind farms again, but with a very decent payment. So I started working as an employee again, in my field (bat ecology at wind farms), and I was very happy because I didn’t have any issues with my condition. The problem there were security issues (drug dealers use to hide at the field where companies want to build wind farms in North Mexico), so I decided to look for another job as a biologist, and found it in South Mexico (Chiapas) working in oil palm plantations. I didn’t last long there: when they knew about my condition they instantly changed their perception towards me: they said they couldn’t be responsible for what happened to me at the field, so they ‘forced’ me to quit… I had to return to my parents’ home in May… Looking for a job… I found it as a junior high biology teacher, I was getting ready to begin in August 20… Unfortunately, last week, while we were having a teacher’s meeting, and after a year without seizures, I had a grand mal, just to know the next day that they didn’t want me to work with them… The reason was to “save” child from the trauma of seeing their biology teacher having seizures… Right now I feel frustrated, however it’s not the first time I have to face it. I know that as long as I have a family, they are always going to support me… Now I’m understanding I cannot be a regular employee, so I’m starting my new company reproducing and selling plants at home, and the big goal is to begin a PhD research next year… If I didn’t have epilepsy, I definitely would love to keep my job as a field biologist, or just as a biology teacher…


    Comment by César Ocampo-Ramírez — August 12, 2018 @ 12:40 PM

    • Cesar, you’ve done so much and had so many successes, I’m positive you’ll find PhD research to be rewarding. And I hope the end result will find you satisfied as a biologist.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 12, 2018 @ 1:46 PM

  28. Good day I wanted my post back to be in charge of the unit I’m working in cause I had to stand off when the seizures started, or go and study social working


    Comment by leone — August 13, 2018 @ 1:18 AM

  29. Breena Anderson, do you ever experience the brutally painful postictal migraines?


    Comment by Jeffrey Liakos — August 13, 2018 @ 8:52 AM

  30. I started epilepsie at 11yrs old they didn’t have meds then so I got whip in school for not listening and not doing home work that I didn’t know about because I had petit mal when I got older lost jobs for that too so I went to a doctor myself I was still only 17 yrs o;d bur anyway the doctor I went to see didn’t know anything about seizures he had to look in a medical book ,, wheni i got married 5 yrs later got naturalized and they told me I wasn’t suppose to come in usa because of epilepsy, but they gave it me was lucky o by the way am from Canada still have seizures am 79 and am tired of seizures but I sew and knit I mess up with small seizure but I keep going I cant do nothing about ti anymore


    Comment by jeannine m lavigne — August 13, 2018 @ 4:34 PM

    • Oh Jeannie, how horrible. And what a sad commentary on that era.

      When I had epilepsy (in the 60s) I went through a lot of denial by everyone around me.

      My parents wouldn’t say the “E” word (my mother still won’t) and I was told I had “uneven brain waves.

      School was torture, but despite going to 12 schools, I made it through. (Although at 65, I still have dreams that I’m stuck in High school, and can’t get out.)

      Of course, when it came to working, I had to lie through my teeth.

      And since I had petit mals and a very distinct aura, I was able to hide away somewhere when I felt a seizure coming on.

      But none of this compares to your ordeals and I’m so very sorry you had to go through them.


      Comment by Phylis Feiner Johnson — August 13, 2018 @ 4:56 PM

  31. It is fun to think about life without cancer and eplepicy. Wow a real game changer! With all God has already done I believe nothing is impossible with God. I just want to do His Will.
    I believe in Heaven and I want to help as many people as I can consider giving their lives to Jesus and live for Christ so we’ll all be together in Heaven forevevermore. I currently seek to live every moment trusting God is leading me. The seizure meds are the worst part of my situation. Since 2009 when I had my 1st grand mal I’ve been on so many different drugs. All the side effects changed my personality. So many people just didn’t know what to think about me. Can’t blame them bcuz they have their own issues to deal with.
    Thankfully I am doing much better with greatly reduced medications but the stigma in the small town I live in is hard to shake. I am building a new support system with folks who know and accept me as I am. Many medical professionals consider my being alive and living a high functional life really quite a miracle. I believe God has a good plan for me and I want to fulfil God’s destiny that He planned for me before the foundation of the world. There is an awesome biblical reference about that in the bible, hope that you’ll do a search about it on the web.
    So life w/o medical conditions. I would be better at loving and accepting others right where they are. No more over thinking my relationships. I’m moving towards that goal much more easily with the med reduction. The rescue meds are awesome, they helped save my life. It is so tricky finding the right mix and amount.
    So becoming a physically and emotionally healthy person who follows Christ is what it is all about for me. I am so grateful for what I can do. Read, write, cook clean my home, garden, get to church to worship God, connect with family and friends, express God’s love to others, pray. Wow, I have a wonderful life.
    The folks who don’t like or want to deal with my limitations is okay with me. I guess the Lord pruned my life so I will be all the more fruitful in the eternal big picture.
    Love all my epileptic comrades!! God bless all of us. Health and healing prayers for all of us.


    Comment by Nancy — August 15, 2018 @ 6:27 PM

    • You sound like a true angel to me.

      Spreading love and understanding, even where there is none.

      Accepting your situation and carrying on with your life despite that.

      You carry your “limitations” so gracefully, with a heart that is full of love.

      Bless you, Nancy. Although I know you are already blessed.


      Comment by Phylis Feiner Johnson — August 15, 2018 @ 6:48 PM

  32. Oh boy. I likely would have followed my passion I took technical college training for. Some occupation in audio be it live sound or studio. I loved working events as a grunt for the stage and grounds. Running the board not so much.


    Comment by Travis — August 16, 2018 @ 12:19 PM

    • Oh, you must be so frustrated, Travis.

      Do you do anything with music now?


      Comment by Phylis Feiner Johnson — August 16, 2018 @ 4:18 PM

      • Rarely. Last year I worked a gig. He said load-in on his request for help, but it ended up being both setup and teardown. So less than once a year now I’ll work a concert. I don’t even attend concerts like I once did. Back in the day I’d drive 3 hours to see an artist. Now, maybe hour and a half, hair more. I did that last fall and again this spring. Now I’m much more picky on WHO I’ll go see. The two cities I mentioned above were for long established Christian artists: Randy Stonehill, and Mitch McVicker (from Rich Mullins band).

        Paying for concerts is something I rarely had to do before; and when I did it was for an act I was a die hard fan of. I worked concerts in my late teens and mid 20’s… Be it at a 3 day festival or concerts in the off season. So for 8 years or so I almost NEVER paid for concerts. I was even reimbursed for a ticket I paid once when the night before the gig they all of a sudden NEEDED help at 8am the next morning. I had offered help the week prior and was told they didn’t need any!

        Thankfully Caffeine and sleep and NOT triggers for me. Man if it had been I would NOT have worked a lot of what I did…Often you find working a gig is a LONG DAY and caffeine is a frequent goto to keep you up. One band I helped back in 94 I found out about their gig the day of, so I paid for it (3 hour drive each way) and helped them pack up after the concert. During that I found out of their second gig in the state few hours south of this site. SO the first concert it was a 46 hour day… Second gig, about 2 days later, I beat the semi to the location by an hour, and it was a 48 hour day by the time I got home…but BEST FOOD EVER at a concert. Not the usual pizza but REAL cooked foods! The hands/workers told me I could eat it…I was planning on a burger or sub.

        Out of ALL the events I worked I was paid at one…and it would have been gas money..whatever it ended up being $5 or $10. Nothing spectacular. But think about it, you got in for free, often get a free shirt or CD, and most of the time the site would pay for food for the hands.

        So yeah, I miss it, but I can’t pull those long days anymore now I’m in my mid 40’s :D. Last year I had a VERY long day with a medical fundraiser. Four drive up there, same return being I was giving a friend a ride there, and then turn back and little over an hour to get home… It was close to 10 hours on the road and boy was I pooped!


        Comment by Travis — August 29, 2018 @ 3:01 AM

      • Wow. What a schedule.

        Sounds like a good and active life.

        (And yeah, we all get older, but to only have that complaint is great in the scheme of things.)


        Comment by Phylis Feiner Johnson — August 29, 2018 @ 9:07 AM

      • Travis, do you ever experience the postictal migraine headaches that many people with Epilepsy get? Phylis Feiner Johnson, you said that writing is what your passion is. Has this been a lifelong thing?


        Comment by Jeffrey Liakos — September 3, 2018 @ 7:34 PM

      • Yes Jefferey, Writing has been a lifelong passion since I was in fifth grade!


        Comment by Phylis Feiner Johnson — September 3, 2018 @ 7:46 PM

      • Phylis Feiner Johnson, I know that Epilepsy can have an adverse effect on people’s health if untreated. Having said that, if I did not have Epilepsy, would I do some things differently? Perhaps.


        Comment by Jeffrey Liakos — September 3, 2018 @ 8:00 PM

  33. If I did not have Epilepsy, I could do a lot of things more independently. Unless these came about for other reasons, I would also be spared the postictal migraines.


    Comment by Jeffrey Liakos — August 19, 2018 @ 5:43 PM

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

    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.

    View Full Profile →

    Enter your email address to follow this blog and receive free notifications of new posts by email.

    Join 2,932 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: