Epilepsy Talk

Return from the Edge… | October 3, 2019

I almost died.

 

For a while I couldn’t even read.

My brain needed rebooting.

They told me my heart had stopped and I was lucky to be alive.

 

It took me several months for my cognitive abilities to return.

Months during which I had plenty of time to think.

 

Previously, I had a high paying job in advertising, which I hated.

I loved my clients and they loved me.

But I wanted to help people.

 

It was time to give back.

And my near-death experience gave me the perfect opportunity.

(Once I found the keyboard!)

 

I went to all sorts of non-profit organizations. No one wanted me.

Until the Epilepsy Foundation of Eastern PA welcomed me with open arms.

The monthly support groups were like manna to the soul.

 

Nevertheless, it was not enough for me.

I wanted to write about epilepsy, a subject dear to my heart.

I sought to put epilepsy out in the open and talk about it.

After decades of epilepsy, that’s what I knew best.

Along with the fear, discrimination and ignorance that went with it.

 

My parents wouldn’t even say the “E” word.

My step-father surgeon told me my brain waves were just uneven.

As I smashed into walls and fell up and down the stairs.

 

But there was nothing wrong with me.

I couldn’t bear it. And knew that I was not alone.

 

I truly believe, in their heart of hearts, that people want to help.

They are kind and caring. Not ignorant and selfish fools.

It was just a matter of showing them how.

 

I wanted to start a website. But, I didn’t have a clue how.

Passion was my motivation.

Helping others was the key.

If we can’t help each other, who can?

 

After much research, gnashing of teeth and some false starts, EpilepsyTalk was born.

 

The purpose is to educate and inform. Those who have epilepsy, plus their near and dear ones.

I was treated like a pariah, and discriminated by even my own parents.

But, I have finally found a safe place.

Where people can come, learn, ask questions, even vent.

 

People who wanted to commit suicide have been talked “off the ledge”.

Others have helped one another cope and even prosper.

 

These kind, caring, compassionate people have become my life.

The reason I get up in the morning.

EpilepsyTalk has become my home.

 

 


36 Comments »

  1. Thank you SO MUCH JUST FOR BEING YOURSELF AND SHARING YOU KNOWLEDGE, LIFE EXPERIENCE, WISDOM AND JUST YOURSELF!! 😊🙏🏼🦅😇💗💕😘

    Liked by 1 person

    Comment by Kathy S.B — October 3, 2019 @ 7:51 PM

    • Kathy, I think that’s what we’re all here for.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 3, 2019 @ 8:15 PM

      • Yes you are VERY RIGHT!! It’s just nice to know and have it put it words some of us aren’t quite sure how to do sometime. ESPECIALLY WITH THE PEOPLE CLOSEST TO US!! Or even the professionals in our field of life us “epileptics” live with everyday. So thank you for having the know how and courage to give epileptics and professionals a place to learn from eachother 😘💗

        Liked by 1 person

        Comment by Kathy S.B — October 3, 2019 @ 8:41 PM

      • Well Kathy, as they say: “Knowledge is power!” 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 3, 2019 @ 9:50 PM

  2. Thank you for sharing and, most of all, for creating this space. I have no local support groups to meet in person, so this blog is my only place to find any needed info or the reassurance to know I’m not the only one.

    Liked by 1 person

    Comment by Sarah — October 3, 2019 @ 8:57 PM

  3. You make a difference to folks who need help.

    Liked by 2 people

    Comment by Flower Roberts — October 3, 2019 @ 9:08 PM

  4. Thanks Phylis. A doctor’s office staff made me feel really rotten today about myself in regards to my seizures. I don’t want to get so sad when people say such things. It’s comforting to read that others get sad too and for the same reasons (even though I truly wish nobody had to be sad for this). It’s always reassuring to read your blog, and the replys from everyone else.

    Liked by 2 people

    Comment by Nancy — October 3, 2019 @ 10:22 PM

    • Doctor’s office’s can be insensitive, to say the least. As can myriads of people.

      Even those near and dear to us.

      That’s why we need each other. To advocate, share comfort and care.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 4, 2019 @ 9:46 AM

  5. Thank you for everything that you do, Phylis. The world needs more people like you.

    Liked by 2 people

    Comment by paleobird — October 4, 2019 @ 12:09 AM

  6. Yes Phylis, You made this world a better place to live for many of us, who had no idea how to cope with this deadly nightmare.
    Your long courageous journey to face this fatal ordeal & share your struggles & achievements with the rest of the world had only made it easier for many of us to learn more about our own medical hardships, we’ve NEVER encountered before.
    Having hard time accepting the neurological disorder I’m going to have to live with & insisting on leaving the hospital intensive care unit, a nurse once told me,,, “WE JUST REVIVED YOU, SIR”, making me feel shivering cold sweat going through deep into my spinal cord & realize that how close I’ve come to death.
    Therefore, thank you for sharing your inspiring experience, opening my eyes & my mind to appreciate everyday of my life.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — October 4, 2019 @ 5:15 AM

    • Gerrie, you’ve always shown an appreciation for life, despite its vicissitudes.

      Through hardship and abuse, you carry with you a bravery and courage I wish I could equal.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 4, 2019 @ 9:54 AM

  7. You were and are a groundbreaker. You always have well researched information and authentic first person anecdotes. Thank you

    Liked by 2 people

    Comment by Barbara R — October 4, 2019 @ 9:11 AM

    • The information comes from thorough research. The stories come from the heart.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 4, 2019 @ 9:56 AM

      • Goodmorning Phylis 😊. It dawned on me thismorning as I was getting my bloodwork done to ask the lab technicians “IF I COULD JUST PLEASE PHONE THEM FOR MY WEEY RESULTS INSTEAD OF ASKING THE PHARMACIST OR CLINIC FOR THEM🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼.” They asked why I would want to phone them instead and I told them “sometimes I am made to feel as though I either don’t matter, my opinion doesn’t matter (nevermind my thoughts), but that maybe they should have chosen a different profession to work in!!!!! Because they sure KNOW HOW TO MAKE ME FEEL CRAZY FOR ASKING QUESTIONS REGARDING MY HEALTH!!!!! So I would rather ask the polite nice “laboratory technicians than my pharmacist, doctor or nurse”. Maybe it’s the challenge I make them face that makes them feel more superior than me, or the questions I ask them that scares them because they don’t have an answer or don’t know how to tell me. My pharmacist was not very happy with me when I told him “maybe you should consider a different profession where you can simple talk to the wall instead of me?”. Thank you for not only talking with me Phylis but TEACHING, EXPLAINING AND CARING FOR ALL THOSE AFFECTED OR WHO LOVE THOSE AFFECTED BY EPILEPSY!! 😊🙏🏼🦅😇😘💗💗💗💗💗

        Liked by 1 person

        Comment by Kathy S.B — October 4, 2019 @ 11:02 AM

      • Brilliant. Get the answer straight from the source, instead of the mumbo jumbo.

        (The problem is, sometimes the “source” won’t cooperate and refers you to your doc or the powers that be.)

        I think it’s a CYA matter.

        (“I’m not qualified to…”)

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 4, 2019 @ 11:20 AM

      • Thank you Phylis 😊. Well apparently I have to meet with an “internal specialist” next week. So we’ll see where it goes from there now. Thank you for being you!! 💗

        Liked by 1 person

        Comment by Kathy S.B — October 4, 2019 @ 4:53 PM

      • Kathy, if you go to myhealth.alberta.ca you can apply to view your lab test results online. They are up the next day.
        Good luck with your internist. Keep us posted on how you’re doing since we are all rooting for you!

        Liked by 2 people

        Comment by Marlyn — October 5, 2019 @ 8:34 PM

      • THANK YOU SOOOOOO MUCH MARLYN!!!!! I GREATLY APPRECIATE IT AND YOU for ALL THR INFORMATION I NEVER KNEW ABOUT!!!!! 💗

        Liked by 1 person

        Comment by Kathy S.B — October 10, 2019 @ 3:13 AM

      • Goodafternoon Marlyn 😃 THANK YOU SOOOO MUCH!!!!!!! I just filled it out 😃😃😃😃😃. Now just wait 10 days the rest comes in the mail. Oh how I wish I knew that BEFORE!! THANK YOU SO VERY VERY MUCH I GREATLY APPRECIATE IT AND YOU!! Please have a very good day today and please now you are VERY APPRECIATED AS ARE EVERYONE ELSE!!!!!!! 😃🙏🏼🦅💞😘

        Liked by 1 person

        Comment by Kathy S.B — October 10, 2019 @ 5:12 PM

  8. Thank you so much for sharing your knowledge. As new mother to epileptic son. I’m learning a lot from your articles. I’ve shared some of the tips with other parents too! I found the empson salts to be very helpful

    Liked by 1 person

    Comment by Linda Mgweba — October 4, 2019 @ 10:56 AM

  9. We love Epilepsy Talk! Thank you for following your heart!♥️ I did not even know my 1st cousin died of status epilepticus until her son told me last year. Or that many family members had diabetes…that explained why my mom kept having me get glucose tolerance tests as a kid. always just low blood sugar but within normal. My son has epilepsy and PNES conversion seizures and multiple TBIs. Status twice in May, placed in coma, heart stopped, lungs stopped..now. ER just treats him as if he only has PNES..we had workd renowned nuerosurgeon say the TBIs have probably caused CTE. so tired if having to explain and explain only to be ignored. recently spent 12 hours at ER bedside while he repeatedly seized..counted over 30 told it was conversion seizures only. NO EEG in the ER or hospital. i had to hold him in bed. no seizure pads in one side. had to hold his head up from banging into.rail. hes 32 and im 63. nurses yelling at him to stop yelling for help when he came to from siezures. well enough said. its a tough life for everyone. thank you for educating and teaching. you have helped us with caring and information we needed desperately ♥️♥️😍😍

    Liked by 2 people

    Comment by harmonyart1 — October 4, 2019 @ 11:20 AM

    • I’m sorry he and YOU HAD TO GO THROUGH THAT!!!!! 💔. But if it’s ANY CONSOLATION YOUR SON GREATLY LOVES AND APPRECIATES THE VOICE HE LOSES BECAUSE OTHER PROBABLY MAKE HIM FEEL THAT WAY!!!!! And he’s UNABLE TO SPEAK FOR HIMSELF AND I THINK YOU FOR BEING HIS VOICE!!!!!!! WILL ALL MY HEART!!!!! On that note sometimes WE “EPILEPTICS AND FAMILIES AND LOVED ONES” that nurses are not always to blame because their also humans as well that probably feel even less helpless, frustrated and aggravated than us epileptics because they may not know themselves or even know how to help or what to say. Their also only human as well 💞. Sometimes their even our families and closest friends and they too panic and at times feel helpless as well and just emotionally shut down their hearts and their minds may also draw blanks too. But they are ALL WE HAVE TOO!! My grandma used to tell me “if you ever want to know the real truth or answers go to the nurses not the doctors!! Because they are the ones that are always there!!!!! NOT THE DOCTORS!!”. As an epileptic THAT IS WHAT MADE ME REALIZE NURSES HAVE GOT TO SHUT DOWN THEIR FEELINGS, EMOTIONS AND MAKES ME FEEL FOR THEM AS WELL!!!!!!! ❤️💕. Especially when they are close to us and are family friends. It took me a long time to even TELL THEM WHY I ALWAYS WANTED TO JUST IMMEDIATELY LEAVE THE HOSPITAL AFTER A DEADLY SEIZURE!! But I eventually told them and my husband and children. To my husband, children and closest friend it is ALWAYS TOLD TO THEM BY ME “PLEASE DON’T EVER EVER LEAVE ME ALONE AT ANYTIME IN THE HOSPITAL WITHOUT ONE OF YOU THERE!!!!!!! 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼. Because they ARE MY SAFETY, LOVE AND VOICE WHEN I DON’T HAVE ONE!! 😘🙏🏼🦅❤️💕😘

      Liked by 1 person

      Comment by Kathy S.B — October 10, 2019 @ 3:33 AM

  10. Harmonyart1, I hope you got further tests, in addition to the EEG.

    I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring.

    Beyond EEGs — Diagnostic Tools for Epilepsy

    https://epilepsytalk.com/2017/02/23/beyond-eegs-diagnostic-tools-for-epilepsy/

    And yes, a person CAN have PNES and Epileptic Seizures.

    “Pseudo Seizures” AND Epilepsy – Yes, You CAN Have BOTH!

    https://epilepsytalk.com/2018/10/02/pseudo-seizures-and-epilepsy-yes-you-can-have-both/

    Like

    Comment by Phylis Feiner Johnson — October 4, 2019 @ 11:31 AM

    • Hi Phylis, My son has had three video EEGs. And three status epi events where he was intubated and sedated. First one in November 2017 put in drugged induced coma for a week, then a one day video EEG after which he was put on Keppra in addition to dilantin and trileptal. We were told he most likely has both epilepsy and PNES. No nuero would take him off Keppra until we took him to county hospital and we demanded as he was in a wheelchair and couldn’t walk or communicate. The second video EEG was for 7 days in October 2018 and they took him off dilantin and tripleptal. Diagnosed as conversion seizures as they didn’t capture any seizures even tho the Dr had seen him have multiple seizures in her office on the floor the month before.

      On April 25 2nd status epi sedated and intubated for 4 days, they brought him out and took off the heavy pain meds and put on home meds and he went status epi for a third time on May 1st. Then transferred to a university hospital because heart stopped and had respiratory failure. He died, they resuscitated. Then while he is in the university hospital where we refused to see the keppra epileptologists they placed him on a video EEG with the needles in his head for many days. (If we weren’t terrified we’d lose him we would have questioned why try to make him have MORE seizures when he just went status twice in a week) He was heavily sedated on fentanly and proprofol, came out of it with further cognitive problems, including ICU delirium. He has CTE and TBIs and will have another MRI for pineal cyst in December at the University of Irvine with nuerosurgeon. He has both but gets treated as if he only has conversion seizures. The UCI nuerosurgeon has said he most likely has CTE but it can only be diagnosed in autopsy… This is just a short history over then past three years. The last ER visit was 30 seizures where they would only give ativan every 4 hours because as the Dr said he was playing some kind of game. Nice, huh. I was in tears when they finally after 10 hours admitted him overnight to calm his brain. The hospitalist gave multiple refills on dilantin and trileptal. Now we have a special program with insurance where he gets a team, RN, referral coordinator, transportation, etc because his case is so complex.

      I will read over your links.. gwen

      Liked by 2 people

      Comment by harmonyart1 — October 5, 2019 @ 4:25 PM

      • Gwen if there is anything I can do, just ask.

        I feel so inadequate in the face of all your trials, I’m just speechless.

        The only similarity I’ve encountered is being in status, having two heart attacks and then an induced coma for 5 days.

        The neurologist did suggest my husband gather my nearest and dearest after my heart stopped the second time, but they managed to pull me through.

        I was one of the lucky ones.

        Liked by 2 people

        Comment by Phylis Feiner Johnson — October 5, 2019 @ 4:39 PM

      • It is SO SCARY FOR THE EPILEPTIC IF THEY KNEW A LONG TIME PRIOR THAT THEY NEEDED HELP OR SOMETHING WAS/IS WRONG!! It’s upsetting when nobody else seems to realize or know that until they ACTUALLY SEE AND HEAR THE SPECIALIST AND THE SPECIALIST HEAR THE LOVED ONE, PARENTS AND FAMILIES!!!!! From me FOR YOUR SON TO ALL OF YOU THANK FROM THE BOTTOM OF MY EPILEPTIC HEART FOR BEING THERE FOR HIM AND SPEAKING AND HELPING HIM!!!!! He is so very lucky 😘🦅🙏🏼💞

        Liked by 1 person

        Comment by Kathy S.B — October 10, 2019 @ 5:17 PM

  11. Phylis, thank you for giving so much of your time and energy to this wonderful blog. I’ve always really benefited from all the new information about epilepsy as well as the support. I wish my own experience with the EFA was as positive as yours, but I’m truly glad you were able to get the initial support you needed to move ahead.

    Liked by 1 person

    Comment by skolly9 — October 4, 2019 @ 9:07 PM

  12. I think that probably among the EFAs, the Epilepsy Foundation of Eastern PA is outstanding.

    They provide an Educational Director and an Epileptologist for our meetings which are open, problem-solving forums.

    A good model for what we have here.

    I’m glad you’ve gotten something from Epilepsy Talk and find it a form of support.

    Just you being here is a form of support for us!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 5, 2019 @ 10:37 AM

  13. Dearest Phylis, Here’s what you can do to help me… Keep writing and sharing and letting everyone know that there is life after diagnosis and there are people who care. And there is knowledge and information right here in your blog. Thank you for all you do!

    My husband and I kept asking ‘Why us’ Why Scott? Why God, Why… we didn’t get an answer until we realized.. this is our Life Mission. To care for our son and make his life as comfortable and happy as possible while ALSO being happy ourselves. After realizing our mission, I’m not so angry and sad or least not as much. It’s all part of the Journey…

    Blessings to all who come here and are walking this path. There are many who are kind and share your path. Take care of yourselves!

    gwen

    p.s. the hospital never told us about my son’s cardiac and respiratory arrest until the next hospitalization. Scott, however, told us about seeing and visiting with Jesus. lol then said, see mom I told you I died!

    Liked by 2 people

    Comment by harmonyart1 — October 5, 2019 @ 7:13 PM

    • And Scott was still able to laugh…

      We are here to help and comfort each other.

      We are our own and each other’s advocates.

      We are here for you.

      Blessings.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 5, 2019 @ 9:11 PM

    • I agree with your boy!! From the mouth of an ANGEL!! 😊🙏🏼🦅😇💞😘

      Liked by 1 person

      Comment by Kathy S.B — October 10, 2019 @ 5:19 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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    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.

    View Full Profile →

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