Epilepsy Talk

Epilepsy — a dirty little secret? | August 15, 2022

Why would you say: “I have epilepsy.”

To be included — or excluded?

To be accepted — or rejected?

To be understood — or misunderstood?

To be loved — or laughed at?

I’d say, all of this — or more.

Epilepsy is either a grace — or a dirty word.

It’s all a matter of how you look at it.

And how you say it.

Speak up. Speak out. Shout!

Let the world know.

I am me. No matter what you label me.

I have a voice…a life…and a heart.

You can help me or hurt me.

You can ignore me or plead ignorance.

But I’m not going to go away.

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12 Comments »

  1. after years of being frightened to mention epilepsy I just got so fed up being pressured to fit in, I say epilepsy and tell people what to do, I’m me, I won’t be seen as epilepsy

    Liked by 1 person

    Comment by Gail Barry — August 16, 2022 @ 3:50 AM

  2. Bravo to you Gail!!!

    Like

    Comment by Phylis Feiner Johnson — August 16, 2022 @ 9:58 AM

  3. Here where I live in West Virginia, there are no support groups for people with Epilepsy & never has been, so about 13 years ago I went to 2 different seizure support groups in Virginia, both supported by EFA. I thought to myself, as i drove to each place 50 to 60 miles 1 way, I will have someone to relate to & maybe talk to face to face. Well when the stories started to be heard & I was telling some of mine, I was told very quickly, WE HEARD ENOUGH !! by the organizer who herself had no seizures in her own life, but had a family member who did. W O W !!! I thought, as What type of a support group is this ? Then later I saw the other gal who was another organizer that she may was not helping herself drinking DIET MOUNTAIN DEW so I asked her, DO YOU KNOW WHAT YOUR DRINKING & HOW THAT CAN CAUSE SEIZURES ? Well the dam gates got opened & I was literally told not to worry or tell her what she was to drink or eat, knowing how I know what MSG’s & ASPARTAME’s can be a root cause for seizures to occur., Then 1 more time I went back there, when a natural remedy doctor was there giving suggestions how you keep a human brain healthy. Well I never heard those same words told to her as I was hearing to me 1 or 2 months before what I was told, as this doctor after hearing what I knew then about my condition, she said to me that night, 1 day you wont ever have seizures again, if you stay aware what you are feeding your BBB Blood Brain Barrier / Brain Chemistry and as time may or may not be on my side to have a life, I did find XCOPRI which is the 1st drug EVER in over 61 years that I believe is working like a drug should with my condition of seizures, I do believe to this day as i did over 50 years ago, when i was a teenager, that FOOD TOXINS are the main causes for seizures, as until all these other drugs have been tried with me an others like YOU, who have the same or similar type of seizures, & the seizures keeps happening until the XCOPRI comes along ? ALERT the 50 MG tablet is the ONLY 1 TO TRUST & THE BEST TO TAKE to stop the seizures if you are not having the results with whatever you are taking, IF petit mals / FOCAL that turn to TONIC CLONIC/ GRAND MALS are what you’re dealing with. It has been 10+ years since I ever have walked into any epilepsy support group setting as I did not tell you of the other experience in Virginia, but to say I was told DO NOT SAY WHAT WE CAN NOT EAT,, THAT CAN MAKE US ALL HAVE A SEIZURE JUST FROM THE FEAR OF HEARING YOR VOICE & YOUR STORY. I just said to that guy, THAT’S MY REALITY WITH SEIZURES, & I can not help that I am DIFFERENT FROM YOU or anyone else here, as I said GOOD BYE & walked out, but i waited for that top doctor that was there from the JHU in Baltimore, which I am sure she wanted to leave that parking lot like ASAP after a few minutes of my talking to her. So in this so called SUPPORT WORLD of the EFA & CURE & others, you have 3 helping you out named ME, MYSELF & I, as I am always looking UP for answers from God, who is the BEST support group anyone can have, who ALWAYS has your back 366 days a year OR is that to mean ”years in a day” ?

    Liked by 1 person

    Comment by James D — August 16, 2022 @ 12:24 PM

    • Sounds like the furthest thing from a support group you can get.

      You talk, then they cut you off?

      Good-bye was mild compared to what I would have said!

      Like

      Comment by Phylis Feiner Johnson — August 16, 2022 @ 12:47 PM

  4. Hey everyone. Research “My Epilepsy Team” It’s a nationwide support group. To start, one creates what’s called: “My Story”. One tells about their background with epilepsy, doctors, etc. It allows you much options for anonymity if that’s an issue, but great options to communicate with others. The link took me about 3 hours to become totally familiar with how to use it. Within 1 day I had 7 persons with whom to communicate, if I wished. One can literally create their own “team” to keep in touch with, or not. That’s your call. Can’t beat Epilepsy Talk for its topics, though. Thank you, Phylis !

    Liked by 1 person

    Comment by Roy Anthony — August 17, 2022 @ 5:42 PM

  5. Roy, what a great option. Thank you!

    Like

    Comment by Phylis Feiner Johnson — August 17, 2022 @ 5:49 PM

  6. I forgot to mention that there is a “search” area where you can enter a city or zip code and the site will give you options of those who participate in My Epilepsy Team from that area. For example, I am a native of New Orleans. I entered New Orleans in the search and numbers of participants from New Orleans and surrounding cities appeared. This gives you a way to create a contact from “back home.” Beware though, this fun option can be addicting.

    Liked by 1 person

    Comment by Roy Anthony — August 17, 2022 @ 6:13 PM

  7. WOW! You could create your own personal support group and actually do things together and go out together without the strictures of the Foundation.

    Sounds terrific. Just be careful of bots and stalkers. (At one point, I had over 100 bots on this site!)

    Good luck Roy! Let us know how it goes.

    Like

    Comment by Phylis Feiner Johnson — August 17, 2022 @ 6:19 PM

    • Thanks Phylis, on the bots. Never gave it a thought. You know how it goes. I was just so excited to hopefully make a few friends.

      Liked by 1 person

      Comment by Roy Anthony — August 23, 2022 @ 2:36 PM

  8. I have a close relative who doesn’t want to hear about my disability so I merely alter the word and say ‘disorder’ so I believe there are many people who ‘lack our talented scope of perspective’ and just don’t see things our way. Or if they have a health concern – they don’t have the guts to say so, and won’t admit it!

    Liked by 1 person

    Comment by leonchavarria — August 22, 2022 @ 6:44 PM

    • Hi, I simply share that “I have a focal impairment condition” which is true. Virtually, to all I’ve told don’t even ask about it. But I use it as a pre-amble to educate them about epilepsy, most importantly that they can’t catch epilepsy like a head cold. Then they become comfortable and start asking questions to educate themselves. Just a suggestion. As to relatives, I haven’t seen or heard from my daughter in over 20 years, as she doesn’t want the potential of having to explain my condition to her friends. I have a son-in-law and his immediate family who play golf, yet I’ve never been asked to participate for they also have fears. Oh well, their loss. It just reveals their ignorance and lack of compassion…..2 personal traits I prefer not to have to deal with anyway. Stating what I’ve read in many personal development books: get these negative people out of your life. Hope this helps.

      Liked by 1 person

      Comment by Roy Anthony — August 23, 2022 @ 2:50 PM

  9. Toxic people do toxic things. (I know first hand!)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 23, 2022 @ 3:11 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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