Epilepsy Talk

Epilepsy as seen — with pain — through a mother’s eyes | April 14, 2022

Her first job as a copywriter was writing informational materials for a children’s hospital. Including a brochure about seizures.

But nothing would prepare her for this…

Open your heart to the shock and the sorrow of a mother witnessing her teenage son’s first seizure.

https://www.washingtonpost.com/parenting/2022/04/04/child-emergency-parent/?pwapi_token=eyJ0eXAiOiJKV1QiLCJhbGciOiJIUzI1NiJ9.eyJzdWJpZCI6IjEyMjgxMzg5IiwicmVhc29uIjoiZ2lmdCIsIm5iZiI6MTY0OTA4MzAxMSwiaXNzIjoic3Vic2NyaXB0aW9ucyIsImV4cCI6MTY1MDI5MjYxMSwiaWF0IjoxNjQ5MDgzMDExLCJqdGkiOiIzYzU3ODUxOS0wMWEyLTRmMTYtYjc4OC0zOWNlNmVkZWQ1ZTIiLCJ1cmwiOiJodHRwczovL3d3dy53YXNoaW5ndG9ucG9zdC5jb20vcGFyZW50aW5nLzIwMjIvMDQvMDQvY2hpbGQtZW1lcmdlbmN5LXBhcmVudC8ifQ.enEMmu8H7_BFYola8gjvgCCUU6AKb2Jh8QoBGCcoQMU

How does it make you feel?

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10 Comments »

  1. Just like those of us who never had personally experienced the tormenting ordeals of Epilepsy before we ended up being knocked out by unpredictable seizures, for a mother watching her own beloved son having his first & subsequent seizures had to be the most shocking, heart breaking moments of her life.
    As copy writer publishing medical brochures, she may had general information to advise people on how to cope with seizures from the outside, but as a mother watching her own beloved son shiver, seize, crawl, shake & rub against the very grounds he was standing on had to be living in hell inside the home, she built to nurture her son into healthy young man.
    While the shocking trauma may continue to haunt the mother for a lifetime, the brave mother will continue to stand by her beloved son & overcome the neurological disorder her son had to live with indefinitely.
    Gerrie

    Liked by 2 people

    Comment by Gerrie — April 14, 2022 @ 10:02 PM

  2. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — April 15, 2022 @ 7:27 AM

  3. I so appreciate hearing the emotions of a Mom being expressed regarding the “first” seizure. I went through a similar experience, and didn’t regain consciousness until after I had been admitted to the hospital. I wasn’t allowed to have visitors for 10 days because they thought that I had spinal meningitis. My Mom expressed her fears by limiting me from going out to pursue dreams. My Dad actually told me “never” to tell her if I didn’t feel well… because “she couldn’t handle it.” This has been the hardest part of living with seizures. Fear rules in so many people’s hearts! and it puts us into prison. I made the decision to never let Epilepsy stop me. I needed to change my plans frequently to achieve my goals, but only by God’s grace. I thank God for the gift of life everyday, especially after coming through 2 brain surgeries.
    I’m going to close with a thought. Mom, you are not responsible for you child having seizures. Please forgive yourself! God is still in control of everything that each one of us will face, and faithfully works out His plans for our GOOD! His strength is made perfect in our weakness. Shalom. Maire’

    Liked by 1 person

    Comment by Maire Archbold — April 16, 2022 @ 11:17 PM

  4. My mother treated me like a pariah and did not witness that many of my seizures. Except there were a few doozies.

    I was told I never COULD amount to anything. I was damaged goods.

    To this day, she won’t say the “E” word and she’s 91. Good chance, she’ll never wake up and hear the music.

    Damaged Goods https://epilepsytalk.com/2020/11/09/damaged-goods/

    But kudos to you for rising above the fracas. Following your star and having the strength and the confidence that you so clearly show.

    I truly admire you. And the kindness of your forgiveness.

    Like

    Comment by Phylis Feiner Johnson — April 17, 2022 @ 9:29 AM

  5. Wow. A true punch to the gut remembering the first seizure. It brings hope….confusion….celebrations that never last long enough….And, tears. Lots and lots of tears,

    Liked by 1 person

    Comment by Anna — April 18, 2022 @ 7:22 AM

  6. Hold onto the celebrations. Put them in your pocket to save for a painful day.

    Gratitude is the Attitude https://epilepsytalk.com/2019/07/28/gratitude-is-the-attitude-2/

    Like

    Comment by Phylis Feiner Johnson — April 18, 2022 @ 9:30 AM

  7. I can absolutely relate I’ve been watching my now 21yr old son have horrible seizures since he was about 13-14 yr old it truly is heartbreaking an I personally feel helpless watching my son who is also autistic and nonverbal having a seizure we have always kinda struggled with exactly how to categorize exactly what type seizure he is having sometimes he will just start literally squalling and tears streaming down his face and nothing you do ever makes it any better and there are days everything is so funny to him for no apparent reason then there are days he will let out this sound I’ve never heard anybody make it is a high pitched squil and it starts out loud and fades as the seizure progresses until he’s no longer breathing and turning blue convulsing usually with his legs drawn up to his chest and his arms fingers and toes all drawn in even his mouth draws to one side those are the worst he’s had a couple different ones like this where he has been sitting with his legs crossed Indian style and broken both of his hips and there are days it’s like he is literally in another world where he stares off for extended periods of time we’ve been dealing with this for years now and it never gets any easier to watch your child whom you would do anything for going thru this something you as a parent can only watch in horror feeling absolutely helpless I wouldn’t wish this on anybody

    Liked by 1 person

    Comment by Amanda — April 20, 2022 @ 2:20 PM

    • Amanda, my heart goes out to you.

      Like

      Comment by Phylis Feiner Johnson — April 20, 2022 @ 5:23 PM

      • My heart goes out to anybody dealing with any type of seizures it’s been one of the most difficult things I’ve ever had to watch my child go through Your blog is one of the best I’ve came across so far very helpful and informative

        Liked by 1 person

        Comment by Amanda — April 20, 2022 @ 5:35 PM

  8. Amanda, I’m glad to be of any help at all.

    Like

    Comment by Phylis Feiner Johnson — April 20, 2022 @ 5:37 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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