Epilepsy Talk

What’s been your greatest success? | June 16, 2019

For me, it’s living.

There was a time when I truly wanted to die.

Life was so out of control and I was so desperate, I saw death as the only way out.

Death was my siren song…whispering to me every day.

And truly, I tried to die. (As you can see, that part wasn’t very successful!)

So, I lived. Rethought my life. And my priorities. For a very long time.

And since I had been given a second chance, I figured I’d better get it right this time.

My husband suggested, “Since your biggest joy is in helping others, perhaps that’s what you should make your life’s work.”

How? I mean, I’m a writer. I can’t exactly save the world.

But at least I could write. And it made sense to write about something I knew — intimately.

Epilepsy Talk was almost like a phoenix rising from the ashes.

A small, loving “family” that was born in January, 2009 and continues to grow and flourish.

The people are caring and sharing. They truly give of themselves, honestly and selflessly.

Unlike other environments, there is no dissing or infighting.

Quite the opposite…

Support is our mantra.

We’re there or we’ve been there, in the painful and puzzling world of epilepsy.

We’ve walked a million miles in each other’s shoes. How many others could or would understand?

You are all so inspiring, brave and courageous. Not like me, wanting to opt out by killing myself.

You have taught me how to live. And why.

All of you who have joined our “family,” have made Epilepsy Talk a success.

Without you, it wouldn’t exist.

 

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56 Comments »

  1. And all of us without your support, no one would have any self-support- knowledge of epilepsy- or will to live. May your 4th go off with a ‘bang’!

    Liked by 1 person

    Comment by Karen — June 16, 2019 @ 2:15 PM

    • I am so fortunate that I obtained all of my career/education goals before being diagnosed with it.

      I also like to be able to have conversation.

      Liked by 1 person

      Comment by Diane — June 18, 2019 @ 8:23 PM

  2. Thank you Karen, that means so much to me.

    Like

    Comment by Phylis Feiner Johnson — June 16, 2019 @ 2:31 PM

  3. Always doing the Walk to End Epilepsy and raising awareness!💜💥💜

    Liked by 1 person

    Comment by JOY STEWART — June 16, 2019 @ 2:40 PM

  4. Always doing the Walk to End Epilepsy and raising Epilepsy wareness for Epilepsy Foundation Eastern Pa, very thankful & grateful!💜💥💜

    Liked by 1 person

    Comment by JOY STEWART — June 16, 2019 @ 2:42 PM

  5. Yay Joy. You rock!

    Like

    Comment by Phylis Feiner Johnson — June 16, 2019 @ 2:47 PM

  6. Thank you for sharing that is means soo much, yes having epilepsy can be confusing at times and knowing your not alone helps a make a diiference

    Liked by 1 person

    Comment by Elena Biela Rivero — June 16, 2019 @ 2:52 PM

  7. Epilepsy Talk my biggest success is to support my peers and to grow and Advocate with them. I to opted out of death in 2016. Depression and Anxiety is very hard to deal with. That is one of the biggest triggers. I also have migraine. My Purple Flowers of Epilepsy 5yrs old is my biggest success and my other groups as well. I started pages. I have even met some of my greatest peers. Would love to meet you someday. Epilepsy surgery is next on my agenda in August I hope it goes well.

    Liked by 1 person

    Comment by jennyme306 — June 16, 2019 @ 2:57 PM

    • Jenny you are a brave soul. And a prolific advocate. Helping so many in so many ways, each and every day.

      I’m proud to know you and wish I could meet you too, some day.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 3:27 PM

      • Thank you Phylis you as well help us all every day and your research helps us all get the knowledge. It should be in a book! Your thest!
        💜💜💜

        Liked by 1 person

        Comment by jennyme306 — June 16, 2019 @ 10:59 PM

  8. There is no ”success” as people believe it is what it is, as everything here never matters under the sun. SOLOMON ”the wisest & richest man who ever lived called anything under the sun, Vanity. Examples of what was acceptable, is the work done for eternity & eternal life, which I have not yet accomplished because I’m still here. Also in 1st or 2nd Timothy it says that all is temporary on earth, but all things in Heaven are eternal. Like I told my pastor & said to him, When you are born, at that second death starts, but that second when you do die, that is when life starts. He thought about it & said I am right, as long as what you do here gets a passing grade and acceptance from God, which I know I will not be here for those tribulation days where I’ll have to suffer MORE than what I have suffered for all my life with. Look at the FAMOUS & RICH people. Are they the good examples for living the SUCCESSFUL life ? They do what they do to get noticed, yet humble people who never cares to be noticed, will never get respect or acceptance by their crowd of this world who they believe they know it all, so it is pointless to prove to this world that you might know a few things that does & could make a difference without someone like them not agreeing with you. You also can not be SELF- EDUCATED with no college degree, & try to tell anyone a few facts that are & have been proven to be true decades later, by the elietes of this world. THEY discovered that, lol DC is not the only place where you find them. Look in your own town & neighborhood, and try to be accepted by a future employer, spouse or anyone, who believe they are better than you. I know your’ thinking I an ranting, but this is NO rant, just a taste of reality of peoples attitudes when they ”think they know more about you ”’because YOU HAVE SEIZURES” than what you know about yourself. So I guess my so called success if you want to call it that, is that seizures have not taken me in closer to 59 years since THANKSGIVING DAY 1960.

    Liked by 1 person

    Comment by C D — June 16, 2019 @ 3:09 PM

    • Yes, I am also grateful that seizures haven’t taken you away and you are still with us.

      And of course you know more about yourself than anyone else.

      By the way, I don’t consider your posts rants, just an expression of your experiences, what you think and how you feel.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 3:36 PM

  9. Although my cluster seizures may only hit me once every 8 months or so, the after effects are even worse with the emotional highs and lows, confusion and memory issues, fear of going out in public, depression. I’m used to working out everyday and I help take care of my elderly mother. Everything comes to a standstill. I can’t even walk my dog. It takes 2 months to get over these feelings and I refuse to do it with more meds. I read Epilepsy Talk all the time. I just had to post this first time when I saw your comment above about wanting to “opt out by killing yourself”. Probably many of your readers have felt that way at some point, myself included. I have a little stone has “courage “ printed on it that I keep in my pocket during those times or I say a prayer or look at an encouraging card a sister sent me, anything to keep me from dwelling on my issues. So that’s the long version of my greatest success. In other words, sounds like mine is “living” just like yours. Just hope it’s a long, long time before someone has to try to fit all that on my tombstone.

    Liked by 1 person

    Comment by Betsy West — June 16, 2019 @ 3:10 PM

    • Keep that hope, that faith and encouragement.

      They are all blessings. Just like your perseverance.

      You’ve got a difficult road to travel and understandably, must seek strength wherever you can find it.

      Blessings to you. I wish you well.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 3:32 PM

  10. For me seizures were out of control leading to a out of control life. Then I became married then to get pregnant. The man I married decided he wanted nothing of a wife and child.
    My parents helped me raise my daughter who just celebrated her 10th wedding anniversary has 3 beautiful children a farm and happy family.
    That is my accomplishment. To get her here help in raising and see her bloom 😁

    Liked by 1 person

    Comment by Bonnie Sutherland — June 16, 2019 @ 3:11 PM

    • What a brave and beautiful accomplishment.

      One that many would admire and even envy.

      I don’t know if I would have the emotional strength you have shown.

      And kudos to your daughter, for her accomplishments, also.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 3:40 PM

  11. Yes Phylis, your husband was right, encouraging you to write about Epilepsy, making me another victorious survivor of Epilepsy for I’ve learned to live with Epilepsy from your courageous inspiring journey in life & dedicated services to helping others, writing about life with Epilepsy.
    Yes Phylis, knocked out unconscious & waking up incoherent, confused, disoriented, angry & disgusted in hospital intensive care units all over town was too hard to bear, there were many times I felt life was worthless to continue living with Epilepsy.
    But thanks to you, I’ve learned a lot about Epilepsy & managed to live with seizures for 20 years, while I’m still supporting my family to establish their lives & spread their wings to fly higher than I ever flew before.
    EpilepsyTalk is certainly the mirror that made me see life from different angle.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — June 16, 2019 @ 5:42 PM

    • Gerrie, you’ve had one long, hard journey. And simply your survival is a triumph in itself.

      Those under your wing are so very fortunate. I’m sure you will teach them to soar beyond the stars and back.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 8:07 PM

  12. My greatest success?
    Shall I say that I am Married to a wonderful woman since 1981. Or should I mention being
    Seizure free from 81-2005. Or
    Seizure free since 2015-present.
    How about Accepting Christ into my life in 1976

    Life is full of successes. You may have to look harder at times, but that doesn’t mean they’re not there.
    Before you decide that “this guy must have been born with a silver spoon in his mouth”
    I was diagnosed with epilepsy at age 3. From then to about age 13, most of my seizures were nocturnal.
    Then when puberty hit that’s when the fun began. Seizures during the day (15-25/day). I’ve been into the ER so often that the staff knew me on a first name basis.
    In the 60s I almost killed myself…twice!
    Thanks Phylis

    Liked by 1 person

    Comment by Mark Thompson — June 16, 2019 @ 6:22 PM

    • But, if we hadn’t lived, we wouldn’t have known all the wonderful possibilities ahead.

      And you’ve been so brave and faithful.

      Your wife, Christ, your very perseverance to live are the most important “successes”.

      You appreciate the sheer blessings of survival.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 8:17 PM

  13. Thank you so much, Phylis, for sharing your story. And thanks for being there for me and for all of us. My greatest success has been staying alive. Status epilepticus almost took me twice. And there have been times when I have wanted to die – because of pain, discrimination, and the misunderstanding of others. Other than that, my greatest success is that I still have the ability to write professionally, even with the challenges I face. At one point, they discussed taking my left temporal lobe, but that would have damaged my writing ability. Thanks for all you do, Phylis! Keep writing, and so will I!

    Liked by 1 person

    Comment by megambon2164 — June 16, 2019 @ 6:28 PM

    • Mary Ellen, you’ve been faced with so many challenges.

      Just the few challenges I know about speak of your strength and fortitude.

      Ignorance, discrimination, physical challenges have plagued you.

      But you still stand up to be counted and heard in the most helpful and heroic way.

      Keep up your advocacy efforts Mary Ellen, and write on!!!

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 8:25 PM

      • God bless you, Phylis, for all of your love, encouragement and support. I needed it now more than ever. I just had another spinal injection and am facing an impending hip replacement. You write on as well!

        Liked by 1 person

        Comment by megambon2164 — June 16, 2019 @ 8:27 PM

      • Great big hugs to you, Mary Ellen! And always the best that life and love has to offer.

        Like

        Comment by Phylis Feiner Johnson — June 16, 2019 @ 8:48 PM

  14. Thank you for sharing! I believe my greatest success is my art. When I had to stop working, painting kept me sane. Every day I try to look at being disabled as an opportunity to dive into my passion for painting. Some days are easier than others…and some just unbearably hard. I recently found out that my epilepsy is caused by something called periventricular nodular heteritopia. That just means my brain didn’t form properly in utero. And it’s probably misfiring in lots of different spots. It wasn’t good news, but it explained why I have so many seizures and why treatment wasn’t working. With that new information, I decided to try a veges nerve stimulater. So far no improvements noticed, but I’ve only had it since February. I’m still hopeful! And still painting!

    Sending lots of love and hugs to anyone who needs it! And if you’d like some colorful art to cheer you up, please, take a look! https://kellyfalk.wixsite.com/artist

    Liked by 1 person

    Comment by kellyfalk — June 16, 2019 @ 7:57 PM

  15. Kelly, what wonderful art! I love the Wintertime Dandelion. But Rubiks is a close second.

    What would life be without passion?

    Writing is what I love, it’s why I get up in the morning. And it powers me through the day.

    Without Epilepsy Talk, I don’t think I’d be able to breathe.

    Like

    Comment by Phylis Feiner Johnson — June 16, 2019 @ 8:44 PM

    • Well, I’m so glad you found your passion too because I certainly enjoy reading what you write! Thank you!

      Liked by 1 person

      Comment by Kelly Falk — June 16, 2019 @ 11:27 PM

  16. Same to you, dear friend. And still working on the love part …

    Liked by 1 person

    Comment by megambon2164 — June 16, 2019 @ 8:50 PM

  17. I appreciate all your time and effort in bringing us information about E. May God richly bless you for all you have done and the encouragement you give to others.
    Tami

    Liked by 1 person

    Comment by Tami — June 16, 2019 @ 9:01 PM

  18. It’s simply a labor of love, Tami.

    I would be nowhere without you.

    Like

    Comment by Phylis Feiner Johnson — June 16, 2019 @ 9:04 PM

  19. Greatest successes since the Epilepsy diagnosis:
    a) closer relationship with God and my Children.
    b) learning to play guitar (classical and acoustic).
    Every day is an adventure in facing fear.
    Sleeping can be…..ugh.
    Sadly most people don’t truly understand what it’s like (sensory issues, food, crossing the street, medications that don’t truly work, etc).
    Thank you so much for your Blog !!!!

    Liked by 1 person

    Comment by Robert S. — June 16, 2019 @ 9:56 PM

    • Wow, Robert, great list.

      I agree that every day is an adventure in facing fear.

      But it can also be another day of facing unknown possibilities, which you don’t shy away from!

      Like

      Comment by Phylis Feiner Johnson — June 16, 2019 @ 10:01 PM

  20. Surviving and thriving.
    I ended my first marriage, leaving in the middle of night with my tiny kids and driven by the police to a relative’s home. That night I was being strangled by my drunk husband, who also got his 2nd impaired driving charge. So then I was a single parent, working full time without child support and going to court. The ex had supervised visitation for a while, then unsupervised. He Was horrible to the kids, but charmed the justice system so they were forced to visit him by police. When he met his next future wife, the kids adored her so that made it easier for them. She wasn’t respectful to me but was great to the kids, and I understood she was under her husband’s spell. They then had a child (my kids were 11 and 12 by this time) and the abuse on this wife was far worse than on me. She left him too after having to live in a women’s shelter. My kids were no longer forced to visit their dad by police, and we were all concerned that the little one would suffer the same abuse my kids did, so using my court documents as guidelines, my kids step mother and I wrote affidavits and filed applications on her behalf without a lawyer, and I supplied a letter from my son’s former grade one teacher that details what he told her about the abuse.
    Together, my kid’s “other mother” and I prevented their baby brother from suffering what my kids did. And, we made sure they had a relationship with one another growing up, even though they live in different parts of Canada. To this day she we are good friends. She even helped me launch my business.
    All the children have grown up (with major hurdles) treating all living things with dignity and respect and are stewards of the earth.
    The odd thing is, something else the “other mother”, my dog of that marriage and I all have in common: The big “E”. Mine more recent than hers, but both after that marriage.

    Thank you for your articles Phyllis. They are always informative, and your words of wisdom are appreciated.

    Liked by 1 person

    Comment by Marlyn — June 17, 2019 @ 12:41 AM

    • Well Marlyn, it seems to me the epilepsy was a consequence of the abuse.

      But what brave women!

      And you, raising THREE children with such love and success.

      Look at the wonderful results of your love and care.

      A true triumph which I’m sure makes you very proud.

      Without you, those children would have suffered so, and been lost in life.

      Like

      Comment by Phylis Feiner Johnson — June 17, 2019 @ 10:52 AM

  21. Thank you Phylis and thank you all. I enjoy readiing about peoples successes and am inspired by many of them. I am also humbled by the realization that although I hate the debilitating side effects of Phenytoin I am in many ways lucky compared with many who suffer from epilepsy or other neurological conditions.

    Michael

    Liked by 1 person

    Comment by Michael H — June 17, 2019 @ 12:50 AM

  22. One success story:
    The first husband caused me a $20,000 legal aid bill … he abused me and the kids … had to stay alive. Husband number two paid off said legal aid bill and I didn’t know about it until I dropped into the office to make a payment. Best stepdad ever and he’s still a keeper, 25 years later.

    Another success story:
    My ex was on shampoo, rinse and repeat. Another wife leaving him with a tot in tow. She was denied legal aid, and so she and I worked together in the court system without a lawyer, but armed with a letter from my kids teacher outlining abuse my child mentioned as evidence, and successfully prevented the ex from ever having contact with the the little boy.

    The kids enjoy a great relationship with each other as adults because we mothers kept their relationship going as they were growing up. An odd situation, but they are siblings, and they are kind, loving and respectful stewards of the earth. There were major hurdles, of course.

    Just a strange coincidence probably, but something in common that my dog from that awful marriage, the other mother and I have: Seizure Disorder.

    Thank you for your articles Phyllis.
    Your words of wisdom are well appreciated.

    Liked by 1 person

    Comment by Marlyn — June 17, 2019 @ 1:34 AM

    • Marlyn, sometimes it takes a village to raise a child.

      In your case, it was a loving step-father and two dedicated mothers.

      How lucky those children are.

      And it’s no accident that they have prospered.

      You must be so proud!

      Like

      Comment by Phylis Feiner Johnson — June 17, 2019 @ 11:00 AM

      • Sorry, thought the other one didn’t post because it was too long haha.

        Liked by 1 person

        Comment by Marlyn — June 17, 2019 @ 12:51 PM

      • Not to worry. They were both excellent posts.

        Encouraging and illuminating.

        Like

        Comment by Phylis Feiner Johnson — June 17, 2019 @ 1:09 PM

  23. I can’t remember how I landed on your blog, but I imagine it was at night, after my daughter had gone to bed. I could exhale, cry for her, let my defense down, pray, cry a bit more for many reasons, and then start scouring the internet for knowledge. We are 3 years in. Your blog is my favorite. Thank you.

    Liked by 1 person

    Comment by Jill sassone — June 17, 2019 @ 6:25 AM

    • Jill, I’m sure you’ve been through a lot of emotional pain.

      I’m glad you found us and remember, we are always here for you.

      Through thick and through thin.

      Like

      Comment by Phylis Feiner Johnson — June 17, 2019 @ 11:02 AM

      • Goodmorning Phylis 😊❤️. I also found you on Internet one night GRASPING FOR KNOWLEDGE and HOPE (for myself, my husband, children and family!!). I’ve always found myself looking to PLAN 10 years ahead of time (that way I know my future has a solid start in life for all of us). When we had our youngest child (of 3) UNEXPECTEDLY it made me even more determined to TRY HARD FOR ALL OF THEM!! There were/are times I find myself stumbling (lol because apparently i’m an unusual case!! As the doctor put it to me!!). We “EPILEPTICS” seem to forget about our spouse, children, loved ones (at times) and ONLY THINK OF OURSELVES (which nobody understands that WE HAVE TOO FOR OURSELVES AND THEM AND OUR FUTURE TOGETHER!!!!!!! On that note I just wanted to tell you “THANK YOU FOR HAVING THE KNOW HOW AND COURAGE TO FOLLOW THROUGH!!!!! I WILL ALWAYS GREATLY APPRECIATE YOU AND THANK YOU FOR ALL YOU DO!!!!!!! It’s NICE TO FEEL PART OF ANOTHER “SECULAR” FAMILY!!!!!!! CONGRATULATIONS PHYLIS 😃🦅🙏🏼😇💕😘😘😘😘😘😘😘. Please NEVER EVER STOP!! TAKE CARE OF YOURSELF 😘❤️❤️

        Liked by 1 person

        Comment by Kathy S.B — June 17, 2019 @ 12:39 PM

  24. If you don’t think of yourself and protect yourself, who will?

    It’s part and parcel of helping your family cope and prosper.

    I’m glad you’ve found Epilepsy Talk to be so helpful.

    Part of that is YOUR participation and caring.

    I am thankful for YOU!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — June 17, 2019 @ 1:15 PM

  25. I had an attack last month at work. Now, i am stuck with medical bills before my 5K deductible. I did not order the ambulance and the hospital visit. This is not my first rodeo.Also, i am waiting for a love letter from the DMV. This is stressing me out. Again, this is not my first time dealing with the DMV. I hate this disease.

    Like

    Comment by loansign@sbcglobal.net — June 17, 2019 @ 10:12 PM

  26. You are NOT alone, Loansign.
    Since November 7, 2018 upto June 3, 2019, I had three grand mal seizures with the last one almost killing me, I’m still going through the recovery nightmares.

    According to the witnesses I talked later after my hospitalization & slow recovery, on June 3, I got robbed while I’m having two consecutive grand mal seizures in a row, I lost my Iphone, jacket & wallet with all the important documents & bank cards in it, I’ve been calling, reporting, applying, asking, going back & forth from DMV to Banks to Transport Agencies for the replacment of my lost documents & bank cards for the last two weeks, the bureaucratic rodeo & confused state of mind has been so frustrating, I got escorted out of the buildings by the Police, Sheriffs & Security Guards like a criminal.
    Adding the ambulance & hospital bills to the whole nightmare is certainly difficult to bear.
    But like a war, successfully winning the arduous painful battles is far more important than succumbing to the enemy, Epilepsy or bureaucratic “rodeos”.
    Therefore, STAY STRONG & have faith in your willpower to overcome all odds.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — June 18, 2019 @ 11:43 AM

    • Oh Gerrie! I didn’t know about all the thefts in addition to being incarcerated in the hospital.

      What a trial. And how brave you are.

      Like

      Comment by Phylis Feiner Johnson — June 18, 2019 @ 2:53 PM

      • Yes Philis, It has been said, “what does not kill you, makes you more stronger”.
        Therefore, the sheer determination & willpower to live, overcome & beat the odds has been powerful driving force in surviving the adversities, under the shadows of Epilepsy.
        And thanks to your informative & supportive website & all members of EpilepsyTalk, sharing their experiences on your website, I’ve learned a whole lot more on how survive the hardships of seizures, more than I’ve ever known before, making my stuggles a whole lot more easier than I could have managed all on my own.
        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — June 18, 2019 @ 3:33 PM

  27. Gerrie, with or without us, you are a courageous man and clearly a survivor.

    Like

    Comment by Phylis Feiner Johnson — June 18, 2019 @ 4:33 PM

    • Oh Philis,,, Thank you for your inspiring compliments when I needed it the most, encouraging me to finish writing & mail the THANK YOU letters & cards I bought for the Fire Fighters, who always came to my rescue without questioning my integrity or passing judgment to my medical hardships, when others choose to pass around their preconceived conclusions, making the recovery process more harder & difficult than it needs to be.
      Again, I got a lot to be grateful for despite the hardships I’ve come to experience due to epileptic seizures.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — June 18, 2019 @ 11:16 PM

      • Oh Gerrie, YOU are the brave and inspiring one, putting your life and dignity on the line.

        Always ready to forgive, even if you can not forget. Helping others understand their plight in light of your own.

        And caring enough to share and advise other people’s hardships. Mo matter how challenging and difficult the subject may be.

        Without you, Epilepsy Talk would not be the same.

        Like

        Comment by Phylis Feiner Johnson — June 19, 2019 @ 10:51 AM


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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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