Epilepsy Talk

My mother once told me… | October 3, 2022

“Watch where you’re going…

You’re clumsy…

You’re depressed…

Stop feeling sorry for yourself…

You sleep too much…

You should study more…

No. You don’t need any doctor…”

Two years later, my father took me to a neurologist.

There was nothing wrong with me. Except I had epilepsy.

My step-father who was a surgeon, described it as uneven brain waves.

My step-mother who was a psychologist, treated me like a pariah.

My mother never, ever said the “E” word.

For her it was like admitting defeat.

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8 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — October 3, 2022 @ 11:36 AM

  2. I had some let’s say interesting moments with family. It taught me a lot of what I wanted in life.

    Liked by 2 people

    Comment by Bonnie — October 3, 2022 @ 11:25 PM

  3. “My mother once told me … that I thought you had that little problem under control.” Sadly, I really don’t communicate with her as much as I could due to that negative attitude.

    But I find negative attitudes towards those of us with epilepsy in so many other contexts – work, relationships, even doctors’ offices, etc … Maybe I’m wrong here, but I am under the impression that that “e word” even in 2022 is still like a cuss word and that “your little problem” is so much easier to tolerate.

    Epilepsy is hard enough to live with so I find that I really need to have people and go to places that support me without a negative judgement: Spouse, Epilepsy Foundation, Epilepsy Internet Support Groups, and/or even self-made Support Groups, where there is not a negativity so that I can come to and be honest. Don’t get me wrong, I’m not looking for pity but support. This increases communication.

    Maybe others find that living with epilepsy is hard enough that having that extra support makes can show us just how fortunate we really are. They can ask me, “So, George, what positive things are you going to do about it?”

    Liked by 1 person

    Comment by George — October 4, 2022 @ 1:21 PM

    • Little problem…uneven brain waves… pariah…it’s interesting — and sad –what others think of us and label us.

      Like

      Comment by Phylis Feiner Johnson — October 5, 2022 @ 10:29 AM

      • Obviously your father did not even know what this disorder is….I’m a little surprised even if he was a surgeon. Well I can’t deny that before much knowledge about our brains and how they work…happened.

        Liked by 1 person

        Comment by leonchavarria — October 23, 2022 @ 6:26 PM

  4. My mother has always been supportive of me.

    What I don’t like is being referred to or called epileptic.

    About a month ago, my sister and I went to Joann Fabrics – where she works. My sister was getting some fabric for the tote bags she is making everyone for Christmas, and she was getting a few fixings for her Halloween costume she’s making. (I just wanted to get out of the house).

    That day I was wearing one of my epilepsy awareness t-shirts and an epilepsy awareness hat. Once my sister picked out the fabric she wanted and we went to the cutting counter, one of her co-workers – who had seen me before – had the guts to ask me, “Are you an epileptic?”

    Luckily I had a face mask on. I paused for a minute and looked out into the distance at the craft storage containers on the shelves behind the cutting counter. The girl asked me right away if what she said was a rude question, but I needed a moment to think of what to say.

    I asked her nicely, ‘What amongst my apparel gave away my diagnosis?’ She was a little confused and said, “Some people are just really supportive.” I tried to be nice in my response in educating her about some of the stigma that still surrounds epilepsy.

    I don’t mind people knowing that I have epilepsy – I won’t shout to the mountaintops or tell everyone I see/meet as I walk down the street about my diagnosis. However, I do not like being called or referred to as epileptic. We are NOT possessed by demons, nor the devil. Our seizures are NOT caused by any supernatural power.

    Liked by 1 person

    Comment by Gwen — October 5, 2022 @ 12:46 PM

  5. Good call. Shame on them.

    I had a friend Charlie who, after two surgeries, chose not to have his hair grow back. So he had what looked like a lightening bolt going across the side of his head.

    Of course those who were bold (or rude, like me) who asked: “What happened to YOU?”

    He took that as an opportunity to give them a little education about epilepsy.

    That was his crusade. That was his triumph.

    Like

    Comment by Phylis Feiner Johnson — October 5, 2022 @ 1:34 PM

  6. People don’t know about Epilepsy… The medical community know more about mental illnesses and lop me in that category even if I’m taken to hospital by ambulance with witness accounts (if paramedics write them down..) If I don’t have seizures “as seen on tv” then WTF?!
    Doctors I used to “work with” in the hospitals after they saw and spoke with me as an adult I might add. They were learning about Epilepsy as I was with my Epilepsy so bloody and painful and extreme!
    Even had a seizure talking about a movie that a few people and I saw.
    My mum and family were treating me no differently than before I was diagnosed with Epilepsy! Unfortunately some seriously selfish idiot went around spreading rumors that I was a drunk and a drug addict and just recently I found out someone was told that I had “Bi Polar”.
    This same person saw me have an Epileptic seizure…

    Is it the city that I’m in or??
    I went to try to get a test done and I was told that because I’m not an addict nor am I a prostitute I was not allowed to have the test done!!!

    It’s election time now! What about My Human and Civil Rights?!

    I don’t know where my doctor is for me to get a requisition for a much needed EEG!

    Like

    Comment by Tabitha — October 20, 2022 @ 4:03 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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