Epilepsy Talk

Epilepsy — A Dirty Little Secret?  | April 28, 2023

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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  1. Why be ashamed that you have epilepsy, and you may have had it for many years- since none of the specialists (neurologists) have found a way to control your seizures. The brain controls your whole body, but we can’t just use medication to control seizures. Some people control their epilepsy in other ways: s.a. with either CBD or THC, or aromatherapy, or acupuncture, or other methods? Is it a matter of faith or belief? Unsure!

    Liked by 1 person

    Comment by Keri Teavae — May 2, 2023 @ 1:54 AM

  2. Thinking of all of this with the LABELING of people with seizures / epilepsy, one like me could rename this with 1 word as a SURVIVAL condition. Do others have to be SOMETHING ELSE for them to suppose to THINK DIFFERENTLY to be accepted by this so called WORLDLY & JUDGING PEOPLE ? lately when I speak to people & tell them I’m almost 18 months without a seizure, as to one person I talked to today at COSTCO, who remembered that BAD seizure I had there over 10 years ago. We were talking about an elderly woman who feel outside their entrance there today as I walked up to the entrance & thought right away SEIZURE ? then thinking back over 10 years ago as I followed that worker into the store, knowing that my mom has fallen 3 times so far this year alone, and try to help of what COULD happen to someone of this woman’s age, knowing my mom is 91. You think everyone who saw that woman lying outside the COSTCO ENTRANCE was judging her, as she was conscious the entire time ? NO, because she had no seizure but with me THEY REMEMBERED as that worker did when I was speaking to him of that day over 10 years ago, BUT THEN I said I’ve been over 17 months with NO SEIZURES, & you instantly see the change in his face & expression as we talked about some other things as he wished me the best to stay seizure free after talking about the drug XCOPRI a little bit. One thing as I said to him how seizures ROBS YOU OF EVERYTHING, as I said to him you can never take anything with you when you die, so it is best to just try to live with the JOY & PEACE that is given by God, through his son Jesus Christ, and he agreed to that as well, that money never gets you to having Enternal life. So not telling a person is NOT LYING when you never say to a person that you have seizures. IF THEY ASKED if you do, then I may say WHAT MAKES YOU THINK I WOULD HAVE SEIZURES ? If that ends any relationship then it was never going to be a relationship to start with. That is how this world thinks though that WE or YOU are the problem & not them, as even when friends gets a little more at ease being around you, they STILL think you are a risk to be around more so than less, because that will make their friends effect their judgement that if someone had ME AS A FRIEND, that that is not approved by their other friends so they keep their distances from us who have seizures. So it is what it is. What A friend We Have In Jesus. < The words of that hymn no person can ever match, unless it is like what I have a Godly Mother of over 91 years old for almost 63 years I have had her. REMEMBER JOBS wife told him,, ''Curse God and die''. yet we are to ''like the world does today,, look UP TO HER & not JOB ? How SICK is that ?

    Liked by 1 person

    Comment by James D — May 3, 2023 @ 8:36 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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