Epilepsy Talk

If You Didn’t Have Epilepsy, How Would You Change Your Life? | August 21, 2020

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?

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71 Comments »

  1. Stay open minded and open hearted and always keep in mind everyone and everything can change on the drop of a dime or blink of an eye and learn how to help with the most caring and compassion with caring and always be willing to learn and change as needed with the times

    Liked by 2 people

    Comment by Kathy S.B — August 21, 2020 @ 2:21 PM

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  2. I have had the condition, if not a diagnosis, all my life. To be without would mean being a different person altogether. I therefore claim the neurological anomaly as part, but by no means all, of my identity.

    Liked by 2 people

    Comment by HoDo — August 21, 2020 @ 2:32 PM

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  3. You’re a wonderful person HoDo, just the way you are. I can’t picture you as anything/anyone better.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 21, 2020 @ 2:35 PM

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  4. If it were not for you being who you are, I would not have known of the Danny did foundation which gave my son his monitor. You make a big difference in many lives.

    Liked by 2 people

    Comment by Ann Supplee — August 21, 2020 @ 2:57 PM

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    • Oh Ann, what you say applies to everyone here. Such generosity with information, sharing and caring.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 21, 2020 @ 3:02 PM

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    • I swear “DANNY DID FOUNDATION” HELPED ME AND MY FAMILY MORE THAN EVEN THEY WOULD NEVER KNOW!!!!!!! THEY ARE ABSOLUTE LIFE SAVERS!!!!!!! Lol 😂 or “ABSOLUTE HEARTATTACK CAUSERS” LOL 😂 as my husband and best friends and family would say!! 😂😂😂😂😂😂😂😂😂. I seriously never realized how fast my husband could run up 13 STAIRS SO FAST!!!!!!! And it only took him 5 VERY LONG steps (or run) to get through our whole house 😱.

      Liked by 1 person

      Comment by Kathy S.B — August 21, 2020 @ 3:46 PM

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    • I fell asleep on my bed on night with my watch on. I ended up accidentally hitting the wall with my arm (putting it under my head) and it triggered!! Which cause my husband to panic!! Mind you watch out because it also triggers if your blood pressure jumps or drops too fast as well!!!!! Secretly when I know I’m about to be a little rebellious I will take mine off so I could quickly (lol 😂 or not 😉) do work around my house or climb a ladder when I know I really shouldn’t!! SHHHHH 😉 I only do that when things have to be done around the house chop chop and not next year 😉😊

      Liked by 1 person

      Comment by Kathy S.B — August 21, 2020 @ 3:58 PM

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  5. I only have focal seizures (like auras), but I would probably drive and have earned my PhD.

    Liked by 2 people

    Comment by Hetty Eliot — August 21, 2020 @ 3:36 PM

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    • I guess driving is really a huge complaint for most of us.

      Epilepsy and Driving (A Small Rant) https://epilepsytalk.com/2019/10/21/epilepsy-and-driving-a-small-rant/

      What were you studying and how did your education turn out? You sounded wistful talking about it.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — August 21, 2020 @ 4:42 PM

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      • I was a terrible driver anyway and it was by choice (I didn’t know what was wrong with me back then but I knew it wasn’t compatible with driving. And I was terrible. The whole worId should thank me).

        I was studying political philosophy and wanted to be a professor. But in graduate school it was just getting harder and harder to comprehend and focus, and the fear surrounding these terrifying “panic attacks” that would suddenly strike along with just general anxiety about my academic performance got to be too much. I commuted to NYC and most of my energy was spent on getting from A to B and without an episode even if it meant fighting like the devil. I did earn my MA but didn’t continue.

        I have not been well employed at all. I wish I had gotten diagnosed 15 years ago. My fear of them stunted my independence, and I believe that I am more foggy brained today because of not being treated for so long. So many emotions and symptoms are intertwined together that it’s impossible to separate them. But medication has brought me much freedom and peace of mind even though I’m not 100% treated. I hope to find others here with my symptoms.

        But hey, no one I know has heard of it and it’s wonderful to ham up as an excuse to get out of stuff 😉

        I know this was long but I hope someone else can relate.

        Liked by 2 people

        Comment by Hetty Eliot — August 21, 2020 @ 11:19 PM

      • Yeah, I always blame it on the meds.

        But, the anxiety can be crippling. Maybe this will help. It won’t take away the panic attacks, but it might shed some light on them.

        Epilepsy, Anxiety and Depression https://epilepsytalk.com/2019/08/03/epilepsy-anxiety-and-depression/

        10 Ways to Cope with Your Stress and Anxiety https://epilepsytalk.com/2020/06/24/10-ways-to-cope-with-your-stress-and-anxiety-2/

        I also computed 1 1/2 hours to NYC many years ago. I was much younger, but I had a killer of a job in advertising. And things got so bad, that my husband paid me to quit my job.

        So, I have a bit of an idea where you’re coming from. And that’s when my seizures were mostly controlled. But, I’d come home on Friday night and promptly have a seizure. It was like clockwork.

        Yes, in a perfect world, we would have been diagnosed and properly treated in time to achieve our dreams. But, you accomplished so much, despite the odds against you. I think you should be proud for as far as you went.

        Liked by 2 people

        Comment by Phylis Feiner Johnson — August 22, 2020 @ 8:59 AM

      • Thank you as always.

        Liked by 1 person

        Comment by Hetty Eliot — August 26, 2020 @ 12:09 AM

      • Lol believe it or not I can actually relate as well!! Thank you for sharing but THANK GOD I LIKE HORSES because if I ever had a seizure my horse would just stop and wait for me to finish my seizure then lick and muzzle me until I came too!! OH THANK I HAD AN AURA LONG ENOUGH TO HOPE OFF (most of the time)!! For the times I couldn’t get off I would come to still in my saddle but my horse still stopped for me!! 🙏🏼🦅😇😘. As for driving that ONLY HAPPENED IN EXTREME EMERGENCIES!!!!!!! But I was able to at least get my learners. As odd as it may sound that was also another reason I say I excelled at sports. Because that’s where I would be able to finally get my frustrations out and get so tired I simply fell asleep when I got home and went to bad (lol but I slept with my grandma most of my life!! And when I didn’t she made me a bed pillow with arms and legs so I could sleep 😴 🙏🏼🦅😇❤️😘

        Liked by 1 person

        Comment by Kathy S.B — August 22, 2020 @ 10:38 AM

  6. WOW!! Imagine to live with NO LABELS attached to your name. For all of 60 years I had some years when no seizures happened to me, as back in 2011 was 1 seizure free year, starting in 2010 & almost for 2 years, 2012 seizure free,, I had since 2000, & there was a 20 year span between my 2nd & 3rd ever Grand Mal when no Grand Mals happened, but then came 1991, 1994 & 1995 when 3,4 & number 5 Grand Mals happened. I don’t know how my life would had changed if epilepsy was never part of it, as I know what I may had done with my life, and I would have had MORE support with my own dreams & life, to where whatever I would had done, there would have never been seizures to make more high bars, longer long jump pits, more hurdles, to jump, as if when you live with seizures, you have to prove yourself to OTHERS 10 to 50 X’s more that you qualify to be good enough to do whatever, compared to what others who have no seizure life, their name alone with NO seizures is good enough for any of them to do whatever. I may had been a banker or a sport athlete player rep, or a pro athlete myself, but seizures robbed me of all of it, & people always thought I could never do anything good enough because I have seizures. Yeah right. Tell that to Einstein.

    Liked by 2 people

    Comment by James D — August 21, 2020 @ 4:03 PM

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    • Einstein obviously didn’t listen. But who knows how severe his seizures were.

      It sounds like you had 20 years of “grace” before the Grand Mals started spinning out of control. I can’t even imagine how frustrated you must have felt.

      I don’t know about being a banker. (I think you would have been bored.) But, with with all your knowledge about eating and living healthy, I bet you would have been a pro athlete, and a great example to others.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 21, 2020 @ 4:51 PM

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      • You could have still been a pro athlete if you so chose too!! Or a dietitian for athletes or even a therapist of whatever you chose to be. If anything to show everyone or give everyone a reason never to quit!! Because we always come back one way or another!! I never dreamed of ever being a parent nevermind having to go into my children’s school and asking them if they can please remove any athletic or scholastic awards down with my name on it because I never wanted my children to feel as though they had to beat me or know I had any awards and feel as though they had no choice but to do what they didn’t want to or to live up to me. They took them down THANK CREATOR/GOD!!!!! So except for what I coached with and for my children they know nothing of the rest because they have to be allowed to be who the really are and do good at whatever they choose because that’s what they choose for themselves!!!!! Not because of me or my husband and our doing!! Maybe the seizures are actually what makes you? Because then you had to learn way more then anyone (without epilepsy) will ever know how to handle or live with. As for a banker I just don’t have that kind of desk job patience. To me I refused to allow seizures to rob me of anything which is why I had awards with my name on them taken down. I knew I could do things so I just did. But I never planned on a husband and children, which changed everything for me. Lol if anything I had NO CHOICE BUT TO LEARN TO BE A BANKER AND YOU NAME IT!! The HARDEST PART WAS NOT BEING ABLE TO PLAY VIDEO GAMES WITH MY CHILDREN AND HUSBAND!! We are already everything we would have done if we didn’t have epilepsy and then some because we do have epilepsy!! Including teaching our spouses, children, family and friends to NEVER GIVE UP AND ALWAYS OVERCOME LIFE’S DIFFICULTIES!! 20 YEARS GRACE WOULD HAVE BEEN MORE SCARY FOR ME THAN ANYTHING!!!!!!!! Or maybe WAY MORE EXCITING!!!!!!! Gosh it can worry’s me to think of what I may have done then with 20 YEARS or better yet I am very happy with all my years with epilepsy because I am the reason my children will know and have compassion, and a constant willingness to have a heart and never think they are better than anyone else!!!!! We’re all human!!

        Liked by 2 people

        Comment by Kathy S.B — August 21, 2020 @ 7:04 PM

  7. I am now71,had epilepsy since a baby.the epilepsy is not the problem in half the careers available.if you have a selfish family then you have no chance of improving your life.but I always was good at mathematics.

    Liked by 3 people

    Comment by lanceminnis — August 21, 2020 @ 4:03 PM

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    • I agree !

      Liked by 2 people

      Comment by Bonnie — August 21, 2020 @ 4:11 PM

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    • I had a family that treated me like a pariah and didn’t think I could do anything worth while. (So, I put myself through college.)

      My goal was to prove them wrong. And I did, much to my satisfaction.

      I bet you would have been great, if anyone cut you a break and believed in you.

      (Luckily, I did have one person. My grandfather. But he died when I was 14, leaving me to fend for myself.)

      Liked by 2 people

      Comment by Phylis Feiner Johnson — August 21, 2020 @ 4:56 PM

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      • OH DON’T YOU LOVE GRANDPARENTS!!!!!!! 🙏🏼🙏🏼🦅🦅🦅🦅😇😇😇😇🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼❤️❤️❤️❤️❤️😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — August 22, 2020 @ 10:47 AM

    • Lol oh you are SO RIGHT!!!!!!! THANK YOU LANCEMINNIS!! 🙏🏼🦅💕😊. I found with myself anyways somehow I was able to be very good at math and all when I had to be ESPECIALLY TO WALK AWAY FROM IGNORANCE AND STUPIDITY!!!!!!! We actually have an up on the world and can say it too!! Because we live almost ALL SIDES OF THE SPECTRUM OF LIFE AND ARE STRONGER FOR IT TOO!!!!!!! I have heard some people refer to epileptics as retarded or mentally incompetent and if I know those people personally (sometimes I don’t though) I very quickly remind them that it’s not my fault al they know is ignorance and if they asked I would as an epileptic tell them what I know they need to know!! But I LOVE MATH TOO!! Oddly English and social were kind of fun as well and biology, chemistry and physics were THE FUNNEST OF ALL!!!!!!! Except my instructor refused to allow us to make anything blow up or smoke in chemistry lol 😂

      Liked by 1 person

      Comment by Kathy S.B — August 22, 2020 @ 10:46 AM

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  8. It would take a book to tell you all I would do.

    Liked by 2 people

    Comment by Bonnie — August 21, 2020 @ 4:09 PM

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  9. This one is hard because I’m good at math and I was an accountant for 42 years so I probably would have been a math teacher or an actuary.

    BUT if I didn’t have epilepsy which made schoolwork harder, maybe I wouldn’t have tried so hard to advance in one subject like I did with math. Then I guess I would have become an outside laborer because I wanted to be just like my dad.

    Liked by 2 people

    Comment by Ed Lugge — August 21, 2020 @ 4:10 PM

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    • It’s really interesting that you had such a skill and talent, which you succeeded at, yet wanted to be something more “hands on”.

      You must have loved your dad very much for him to be such a strong role model.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 21, 2020 @ 5:05 PM

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      • I not only loved my dad I admired him. Imagine out of six children, four have some kind of medical problem as well as your wife. He worked his bu** off to make sure we were getting the help we needed which everyone knows was harder to do back in the 60’s, 70’s. I used to think his job came with no vacation until I found out he worked those days because he needed the $.

        That’s why I want to be like him.

        Liked by 1 person

        Comment by Ed Lugge — August 24, 2020 @ 12:40 PM

      • Wow. That’s one loving, noble and dedicated guy. No wonder you wanted to be like him. It wasn’t the work. It was the soul.

        Like

        Comment by Phylis Feiner Johnson — August 24, 2020 @ 1:03 PM

    • In my culture THATS how we learnt!! For me it was by all of my great grandparents, great aunties and uncles, grandma and aunties and uncles. We were told a story then we were shown what to do and we had to show them in return. But our lessons were all taught through the land, earth, universe and galaxy and on and on. As I grew up and became a mother, coach and on and on I realized the lessons we shown and taught through our stories and off the land. RIGHT TO MATH, SCIENCE, ENGLISH, and evening social studies!! My challenge was realizing just who I was and my problems arose primarily through my biological reproducer or whenever she was here!! But I ALWAYS AND FOREVER WILL REFER TO MY GRANDMA AS “MY MOM”!!!!!!! 🙏🏼🦅😇🦅🙏🏼😘😘😘😘😘😘😘

      Liked by 1 person

      Comment by Kathy S.B — August 22, 2020 @ 11:00 AM

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  10. What a great and complex question. I think you have a.bunch of us just stumped. Those are compliments to you, Phylis. I can only respond, which will.probably not be an “answer”. Here it is a Friday night. My energy is pretty low and medication time is within minutes. I used to have so much energy and it will take a drop once another dose of generic Klonopin and Lamotrigine are in me. But you know what used to give me energy? It was being with people as their priest when they were going through hell. I thought it was so.much of a privilege to help or be comforting or something positive. Well, as so many of us involuntary do now is wear that Scarlet Letter of an E around our necks. True or not, I feel that some people feel like I’m going to go off like a firework in the form of a seizure. I do find being able to be with other people who have epilepsy when they are going through their own hell gives me energy, satisfaction, and a sense of purpose, because I can truly understand what they are going through. Sounds strange, I know. How would I change my life if I didn’t have epilepsy? That’s a tough one, Phylis. For now I will try to be with those who travel the same unpredictable journey of epilepsy. Maybe that will lead me to an answer.

    Liked by 3 people

    Comment by George Choyce — August 21, 2020 @ 7:58 PM

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    • Goodmorning George 😊. Yes I know the medications can make us VERY TIRED!!!!! When I get like that I just take a quick nap wake up and start again refreshed!! Mind you some days are harder than others I know!! Thank you for your kind, caring, loving, accepting and compassion for everyone. Please save some of that for yourself and KNOW YOU ARE NEVER ALONE!! That’s why we’re all here most of the time!! God bless and take care 🙏🏼🦅😇🙏🏼😊

      Liked by 1 person

      Comment by Kathy S.B — August 22, 2020 @ 11:07 AM

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  11. You are a comfort and a positive force — HERE! And as you’ve been through your own hell, you know it and can help others through it with the purpose that is so intrinsically part of your personality.

    Don’t put yourself down, George. You ARE who you want to be. You just don’t see it.

    Liked by 2 people

    Comment by Phylis Feiner Johnson — August 21, 2020 @ 8:38 PM

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    • I know what I would do in a second. Sing. I had a lot of professional training in music. I just had my VNS lowered so I can sing again. I’m having so much fun. I was trained in opera, and the violin. I was in many musicals with no acting abilities lol. I volunteered in schools for about 20 years,so teaching music might be it. I love working with children. I love being around people.

      Liked by 2 people

      Comment by Teresa Daniel — August 21, 2020 @ 9:28 PM

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      • That sounds ideal. Like the best of all possible worlds. Singing and teaching children to sing. That would be so fulfilling!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — August 22, 2020 @ 8:39 AM

      • That IS SO NEAT!!!!!!! Here in my house we all play an instrument of some sort!! Lol 😂 I swear we could probably have our own orchestra!! My son, youngest daughter and brother ABSOLUTELY LOVE DRAMA, but my son on the other hand WILL ABSOLUTELY NOT DO MUSICALS!!!!!!! Again in my culture part of our prayers was/is with drumming, singing, dancing and all forms of art!! Because nothing was ever written down it was all oral and physical teaching and we live (some still do) off the land itself 🙏🏼🦅😇🙏🏼❤️😊. My language is kind of hard to properly translate to English but (for what I can kind of say that was told and shown to me over my life by my old people was/is) a person who has seizures is referred to as “we quickly pass away, but we also come back” which me/we have an EMBEDDED PART OF US THAT ALLOWS US TO SEE DIFFERENTLY THAN SOME ONE WHO CAN SEE OR NOT, HEAR DIFFERENTLY THEN SOMEONE WHO CAN HEAR OR NOT, FEEL WHAT EVERYONE CAN OR CAN’T FEEL AND EVEN TASTE THING EVERYONE CAN OR CAN NOT!! But we have to learn how to do just that and sometimes teach one another too!!!!!!! Because nobody will EVER TRUELY UNDERSTAND AND EPILEPTIC EXCEPT ANOTHER EPILEPTIC OR EXTREMELY CLOSE LOVED ONE!!!!!!! But even with that understanding there is ALWAYS A LESSON IN THE SHARED STORIES!! 😊🙏🏼🦅😇🙏🏼😘

        Liked by 1 person

        Comment by Kathy S.B — August 22, 2020 @ 11:20 AM

  12. This is a hard one. Without the condition, I wouldn’t be who I am now. In some ways, my anxiety about my seizures has made me a fearless advocate and broken me out of my shell, so I am grateful. I am a better journalist because I bring greater understanding and compassion to situations that others just don’t understand. But the DRIVING! UGH! That has held me back so much. As far as income, housing and opportunities. True, I have been seizure free long enough to get a license, but you have to earn enough to get driver’s ed, the car …. And relationships. It would have been great to have had the chance to have a kid. But I would rather be able to have my independence and be strong in who I am and hopefully find a guy who will appreciate me for me. I am just grateful I am doing well and am alive to tell my story.

    Liked by 2 people

    Comment by Mary Ellen Gambon — August 22, 2020 @ 9:23 AM

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    • Good for you Mary!!!!!!! Yes I must ADMIT “EVEN I NEVER EVER PLANNED ON HAVING CHILDREN OR EVEN GETTING MARRIED!!!!!!!”. But I look at my children now (as adults) and think to myself MAYBE I DIDN’T DO TOO BAD AFTERALL?! Everything happens for a reason and maybe yours is to be an OUTSTANDING COURAGEOUS YOUNG WOMAN WITH NO FEAR OR BOUNDARIES AND TO TEACH THAT TO THE WORLD AS WELL!!!!!!! Please BE WELL AND TAKE CARE OF YOURSELF MARY AND PLEASE STAY SAFE!!!!!!! 😊🦅💕

      Liked by 1 person

      Comment by Kathy S.B — August 22, 2020 @ 11:29 AM

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  13. Mary Ellen, your story is a rich one, full of accomplishments, awareness and advocacy.

    Without you, the Boston area would be a bleaker place. You stand out as a voice of reason, even if it means being a rebel.

    You are a rebel with a cause that can profit all.

    Congratulations for all you do and all you are.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 22, 2020 @ 9:43 AM

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    • Thanks so much, Phylis! I feel like, if I still go places where I am being called out for having epilepsy and saying I am “brain deficient,” how can I be the voice of reason? It is good to hear confirmation that what I am saying, doing and writing really does make sense to people both inside and outside of our community. Having epilepsy has made me work twice as hard for things most people take for granted – even simple things like getting a seat on the bus, as you know. I would not give up that determination for anything now. And I wouldn’t have had the opportunity to connect with you!

      Liked by 2 people

      Comment by Mary Ellen Gambon — August 22, 2020 @ 9:58 AM

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      • Your a very lucky lady!!!!! Lol 😂 I’m still trying to figure out how to even have coffee with Phylis IN PERSON!! And YES YOU ARE RIGHT!! I chuckled one time because one of my children secretly said to me “mom let them call you out please? JUST SO I CAN HEAR AND SEE YOUR AWSOME COME BACK WITH CLASS 😘”. I looked at my child and said “only when they really need to be humbled I think of something then, but not right now I don’t have the time for that!!” And the led my child for believing in me 😘

        Liked by 1 person

        Comment by Kathy S.B — August 22, 2020 @ 1:09 PM

  14. The very things you are accused of, make you a voice of sanity and reason. Just combating that ignorance is brave.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 22, 2020 @ 10:10 AM

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    • Thank you SO MUCH! We will press on together.

      Liked by 2 people

      Comment by Mary Ellen Gambon — August 22, 2020 @ 10:25 AM

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      • Yes. Like rescuing old homeless people from seizures on the railroad platform!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — August 22, 2020 @ 10:32 AM

      • Lol 😂 I live 1.5 blocks from the train tracks and I just turned 50!! Believe it or not even I have had seizures on the tracks too a few years ago!! While we were all going for a walk one night.

        Liked by 1 person

        Comment by Kathy S.B — August 22, 2020 @ 11:44 AM

      • I LOVE REBELS!!!!!!!!!!!! 😃😃😃😃😃😃😃👍🏽👍🏽👍🏽👍🏽👍🏽💗

        Liked by 2 people

        Comment by Kathy S.B — August 22, 2020 @ 11:30 AM

      • Then we must be two of a kind! Rock on sister!

        Liked by 2 people

        Comment by Mary Ellen Gambon — August 22, 2020 @ 12:48 PM

  15. I was taught “you take what you can and leave the rest, but don’t always think to check and make sure their still learning and coming along as well!!”. 😘

    Liked by 1 person

    Comment by Kathy S.B — August 22, 2020 @ 11:42 AM

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  16. Thank you 😊. It’s their fault they only have brain and their heart seems to shadowed until they fall or someone they love so dearly ends up having a problem that eventually causes seizes!! Ignorance always has a way of catching up to people.

    Liked by 1 person

    Comment by Kathy S.B — August 22, 2020 @ 1:12 PM

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  17. I would have a business, and house and career without the stigmatizing of people.

    Liked by 2 people

    Comment by Ecf — August 22, 2020 @ 4:09 PM

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    • The stigma is discouraging and often makes the possible impossible. I also, had a really tough time of it.

      (Lying to get a job, because it would be bad for their insurance. I would have never gotten the job anyway, if I had been honest.)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 22, 2020 @ 4:42 PM

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  18. I have to agree to a point. I can’t lie because my conscience wouldn’t let me if I tried too!! Sometimes though having people even pretend to put the other shoe on the other foot never hurts anyone!! Especially a corporation but PLEASE START WITH YOUNG SCHOOL AGE CHILDREN FIRST!!!!!!! Because they often seem to be more flexible to watching, listening, trying and ASKING QUESTIONS THE MOST!!!!!!! Unless you already grew up with a lot of their parents like me, my husband and children have in a SMALL TOWN!!!!!

    Liked by 1 person

    Comment by Kathy S.B — August 22, 2020 @ 10:24 PM

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  19. Oy Phyllis this question has beckoned me all week. It was the 14 yr ago tragedy that also caused the brain
    damage so really I lost everything–I am now at a cognition level of a 5th grader 3 brain surgeries and my community and people who knew me before all ask my husband how i am doing . Lots of love has come my way. Not so much my family—except mom. So now I am in therapy working on radical acceptance of my condition. It is real it will not get better. I am really in a mourning place. One thing that has come to me is after all this I really could be a great life coach–used to be a sales trainer, teacher etc. I just am too unreliable to make appts my meds can have on or off. Tho I strongly believe that I have learned the hard way and could convince people don’t wait on a neat dream or take your good health good friends good times for granted. it really could be gone tommorrow. Be grateful, be kind. You could have a terrible car accident tommorrow too. It’s hard you guys I really appreciate being part of this group and reading your comments.
    thanks advice always welcome. Laura

    Liked by 1 person

    Comment by Laura Michael Hood — August 25, 2020 @ 11:08 PM

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    • After all the terrible things you’ve been through and your incredibly brave attitude, I think you would make a wonderful life coach.

      Few have faced the adversities that you have. But, despite the mourning, you’ve come out on the other end. In spite of the pain and crippling emotional circumstances, you are able to see and appreciate the positive.

      I don’t think many people in your position could say that.

      I salute you and am proud to know you and all that you’ve achieved.

      Like

      Comment by Phylis Feiner Johnson — August 26, 2020 @ 9:34 AM

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  20. Wow your a life force! do you have any ideas as to how I could make this happen in my situation. I still have a flip phone–I get along tremendously with the golden agers who have no idea how all these new contraptions work. One thing I have to add –the commercial for the life alert–I’ve fallen and I can’t get up-used to make us the kids at the time laugh. I have one changed my house to have an alarm system yrs ago. I never thought I would ever get food stamps at some point a couple yrs ago i had to for months—this actually is a dirty little secret to me. I am shaking now typing this. Going from Louis Vuitton purses I presented myself with for outstanding performances in my career to ………..a lady who paid for groceries with a debit card have had a go fund me for my meds.

    Liked by 1 person

    Comment by laura and michael hood hood allan — August 26, 2020 @ 2:31 PM

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  21. Job idea…caregiver to older people. If you can show them tech, you could probably help them through a whole lot more.

    You might consider it babysitting — for those at home who are not ready or don’t want to go into assisted living.

    You might have to take some courses online to get certified but since you’ve been there, done that — perhaps you can help them deal with their day to day dilemmas.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 26, 2020 @ 2:42 PM

    Reply

  22. Hi Phylis,

    If I didn’t have epilepsy, what a concept!
    Even though I had very late onset epilepsy (age 47) which I know makes me extremely fortunate, it’s impact on my life has been huge.
    I’ve been getting a lot of counseling for a lot of years for the anxiety related to being an epileptic. I’m very lucky to have only the auras now, the grand mals have been controlled for quite a while now.
    I’m aware that I need to live like an old lady (which I am lol). I need regular sleep, eat on time, and don’t get overheated.
    I have tested my boundaries more and more. My beloved husband died a year and a half ago, so I now have no one to lean on. He was amazing and kind to me. I felt like I had nothing to lose because I had already lost everything. So I decided to travel alone to India and Nepal this February. I even went in a hot air balloon! I didn’t care if anything happened to me over there. Of course nothing did, but what did happen is I realized that I can do ANYTHING I want.
    I’m realizing that it is true that the only thing to fear is fear itself.
    When the COVID situation lifts, I have so many more places I want to see! If I get into trouble, someone will help me. I have faith in people.
    We as epileptics are not damaged goods! We’ve got a bit of a wiring glitch from time to time, that’s all.

    Love to you all
    Eve Quigley

    Liked by 1 person

    Comment by Eve Quigley — August 28, 2020 @ 9:58 PM

    Reply

    • What a brave and determined soul you are.

      The faith you have in yourself and life itself is wonderful.

      Your courage and perseverance could teach us all a thing or two.

      Rock on, Eve!

      Like

      Comment by Phylis Feiner Johnson — August 29, 2020 @ 10:00 AM

      Reply

    • Good on you eve.come to Australia and visit our family.

      Liked by 1 person

      Comment by lanceminnis — September 10, 2020 @ 5:12 PM

      Reply

  23. Eve, this is laura the one commented above yours. Thank you. My onset was at 37 and my husband has taken care of me since. I love and feel it is a blessing of your comment this evening. Your confidence and faith in people is awesome I hope to get there I will. thanks thanks thanks laura

    Liked by 1 person

    Comment by laura and michael hood hood allan — August 29, 2020 @ 1:27 AM

    Reply

  24. Laura, if you had as much faith in yourself as I have in you, you’d realize that anything is possible — for you, too.

    Like

    Comment by Phylis Feiner Johnson — August 29, 2020 @ 10:07 AM

    Reply

  25. In some ways, having epilepsy hasn’t changed my life. I never learned to drive, out of choice, not because of epilepsy, which I only got when I was 47, so not being able to do it now makes no difference. I did many of the things that I’ve done without having it, not having had it for 47 out of 49 years of my life. I would be healthier now – the medications have all given me side effects and left me with less energy than before. I struggle with taking medications, as I don’t want to be supporting animal experimentation. I would probably be looking forward more than I do, and have more confidence about being able to take on new things, more responsible jobs, etc. Perhaps I have to learn that getting on isn’t everything (not that I’ve ever been hugely ambitious).

    Liked by 1 person

    Comment by Phyllis Green — September 4, 2020 @ 9:26 PM

    Reply

  26. Well, as you infer — the journey is part of the destination.

    Like

    Comment by Phylis Feiner Johnson — September 5, 2020 @ 9:59 AM

    Reply

    • In one of his poems, George Evans writes, “the journey / that is my destination.”

      Liked by 1 person

      Comment by HoDo — September 5, 2020 @ 10:58 AM

      Reply

  27. If I don’t have Epilepsy, I swear I’m going to conquer the world. I am going to make myself happy and not just drown myself on seeing other people being happy because I can’t do this and that . I’d make myself happy. I won’t allow myself to cry every night and think that I’m just a disgrace to the family. I’d make myself happy. I’d be happy.

    Liked by 1 person

    Comment by Syquia Sue — March 28, 2022 @ 7:12 AM

    Reply

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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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