Epilepsy Talk

What’s been your greatest success? | April 15, 2013

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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40 Comments »

  1. My success, has been surviving. My faith helped me thru thousands of seizures (50 years worth), numerous car, truck and bicycle accidents and multiple surgeries including 2 brain surgeries. The last surgery has left me seizure free for 3 1/2 years so far. Now, I’ve been blessed to cross paths with Phylis and her little family here, and educate myself so I can help others.
    Thank you Phylis, you’ve done more good than you could ever imagined

    Like

    Comment by Charlie — April 15, 2013 @ 3:50 PM

    • TOTALLY AGREE WITH YOU,,, CHARLIE,,, Surving day by day, one ordeal after another & coming out a winner to survive another day.

      That’s ended a whole lot of accomplishment in Epilepsy.

      Thanks God we are able to talk about it on here, when all seems lost & the sky just has fallen on top of us.

      Coming this far,,, it’s ended great success.

      CHEERS EVERYONE,,,, WE HAVE COME A LONG WAY TOGETHER 🙂

      Like

      Comment by Gerrie — April 16, 2013 @ 6:43 PM

  2. And look how much you’ve helped others. Especially with the support group YOU started.

    That’s what we’re here for, to help each other and to congratulate each other on our successes.

    Like

    Comment by Phylis Feiner Johnson — April 15, 2013 @ 5:52 PM

  3. I have only been following Epilepsy Talk for a couple weeks, but I read something new almost daily. You’re knowledge, and that of others who have been willing to share their stories and support through your blog has been amazing.

    It is amazing how much it has brought everyone together with the common goal of learning and sharing. For me, as someone who has not had to deal with epilepsy and seizures until 8 months ago, it was a god send to find this site.

    Your successes are duly noted. Thank you.

    Like

    Comment by Scott Oosterom — April 15, 2013 @ 7:11 PM

    • Scott, we ALL contribute to help one another through our own personal insights and experiences.

      That’s why we’re a “family”. Because we support, help, emphasize and celebrate each other.

      I’m just a catalyst.

      Yes, I do a LOT of research to bring information to others. But people like you are why I do it.

      One advantage: I’m a writer, so at least I can do it coherently! 🙂

      Like

      Comment by Phylis Feiner Johnson — April 15, 2013 @ 7:31 PM

  4. Seems this surviving thing might end up being a theme here! I am very thankful & try to never forget ,with or without anything I AM still here!
    “Success” is a broad subject.But with E I suppose the deeper understanding & knowledge I have with it now ,also coming to realize I probably have had this my entire life & not just the last 19-20 yrs. I have had T.C. szs.
    Understanding my aura ,maybe not the same thing people think of as a feeling before a sz. but more of a presence, an internal feeling that “something” is different & at different times ,it changes. I often say “My Aura Is persistent” I came to find the knowledge & coming into better contact with my feelings through talking with others & reading hundreds of other peoples stories & talking with people.
    My greatest success overall may sound simple but it is HONESTY I mean true,deep HONESTY with myself.
    I now find what a rare trait this actually is.
    I find most of us find it easiest to follow or lead but rarely stand alone with confidence.
    I found this through separating myself from alcohol & drugs but it has come to mean so much more.
    And Phylis I am glad you saw the OTHER way out!
    I will disagree with the thought of a “Second chance” though ,it was your first chance! and YOU chose the way that kept you alive. & it’s not a chance it’s a choice!! my word of the day for a while will be SUCCESS. Thanks. Rick

    Like

    Comment by wichitarick — April 16, 2013 @ 1:36 AM

    • Sometimes surviving, by itself, is enough. (And, believe me, I’m not one to belittle it.)

      But understanding the odds, yet being so honest and persistent. THAT takes a load of courage.

      Like

      Comment by Phylis Feiner Johnson — April 16, 2013 @ 9:41 AM

  5. Hi, I am from South Africa. I have a daughter of 22 how became uncontrolled epileptic at the age of 15. It has changed my child. I am reading and searching for a cure. I trust in God that he will cure her in his own time. I just want to mentioned that it also changed my life as well as my other two childrens lifes. Noboddy knows just how much a mother of an epileptic child hurts, everytime your child has a seizure. The brother and sister cries behind close doors. How it has changed our way of living. The inside of out house. Even loss of friends. I can’t begin to tell. Yet, i can not immagine my life without my daughter. I just want her to be healthy and happy. I can’t explain how I wish only the best for her. To all the families with epileptic children out their, I think I know what you are going through. I pray that you will find strenght from God and that you will find the answers you are looking for. God Speed to you all. Hannetjie

    Like

    Comment by Hannetjie — April 16, 2013 @ 2:19 AM

    • We DO understand what it feels like. And my heart goes out to you, your daughter and your family for its suffering.

      But, while it’s painful, epilepsy is not the end of the world. Just look at us.

      Do you have a neurologist whom you have faith in?

      Are there any “support groups” available?

      By helping yourself, you’ll be helping your daughter, too.

      Like

      Comment by Phylis Feiner Johnson — April 16, 2013 @ 9:28 AM

      • Hannetjie,,, We live in your daughter’s shoes everyday & we know what you are going through.

        YES, It’s tormenting to see your family going through this nightmare,

        Hannetjie,,, KNOWLEDGE IS POWER, We learned the hard way that the best way to survive this ordeal is, to accept the EPIPLESPY & CONFRONT THE MENACE FACE TO FACE, learn & teach your family what is Epilepsy, How to manage seizures.

        ONCE YOU FEEL,,, You are in charge of the menace & know EXACTLY how to react, you will be in better postiion to UNDERSTAND, ACCEPT, SURVIVE & OVERCOME the ordeal & help your family LEARN that , Epilepsys just like any other health difficulty, which can be CONTROLLLED through medications.

        Meantime, Check this important very informative links, to learn more about Epilepsy.

        THE MORE YOU KNOW, THE BETTER !!!

        Wishing your family, all the best.

        Here are some articles that may be of interest:

        New Epilepsy Diagnosis — Now What?

        https://epilepsytalk.com/2012/04/30/if-youve-just-been-diagnosed-with-epilepsy/

        Like

        Comment by Gerrie — April 16, 2013 @ 7:12 PM

  6. My success has been a Positive Attitude. I have that attitude because I am a Jehovah’s Witness. He is my Rock and my Salvation. Jesus, his only begotten Son, is my King.

    Like

    Comment by Ruth — April 16, 2013 @ 6:53 AM

  7. Everyone needs a Positive Attitude, that is a fact. Also, your thread on Gratitude is the Attitude, I hope I got this one right.

    Phylis, that has really helped me and several other people to be thankful for 5 things everyday.

    I am now having to overcome my falling. I have fallen on the dishwasher door a couple of times and hit my head so bad that I broke the dishwasher door. I started doing the dishes by hand. I found that I preferred that.

    My husband just had to by a new dishwasher. He does not want me to use it. why did he buy one?

    I am sleeping a lot now. I will be sitting up and just fall asleep. I wonder if I am having seizures or is it because my neurologist increased my meds to much.

    Today, I am grateful for:

    1. Being able to do housework
    2. Listen to my magazines and the Bible on my CD player.
    3. Having a husband and son who loves and takes care of me. One of them is always in the house with me.
    4. I am able to do 10 minutes of exercise a day. I hope i can increase the time. That is one of my goals.
    5. I am looking forward to leaving the house on Thursday. We will be gone all day.

    What is everyone on this post grateful for?
    That helps to keep your mind off of epilepsy and think about what you can do. That is one of the keys to success.

    Like

    Comment by Ruth — April 16, 2013 @ 8:40 PM

    • Ruth,,, You ALWAYS amaze me with your power of faith & gratitude for the basic things in life, where human take everyday life for granted.

      LADY,,,, You are a hero, for making every MOMENT IN LIFE counts!!!

      Thank you for sharing your POWER OF FAITH.

      Personally,,,

      The Public Library has been putting up with my Grand & Petite Mal seizures for many years NOW.

      And, in every Epileptic incident, the Public Library has been very understanding, caring, helpful & first line of rescue to my welbing & uninterrupted access to all other library useres & patrons, while still dealing with my seizures.

      Therefore,

      I’M EVER DAY THANKFUL TO THE PUBLIC LIBRARY :-):-):-)

      Like

      Comment by Gerrie — April 17, 2013 @ 6:40 PM

      • Just as you are thankful to the Public Library Gerrie, we are thankful to have you as part of our “family”!

        Like

        Comment by Phylis Feiner Johnson — April 18, 2013 @ 12:38 PM

  8. God bless you Ruth. (And I hope the fatigue is a side-effect of your meds. Have you had your blood levels checked?)

    And yes. I agree. I think we should go back to “Gratitude is the Attitude.” (You know, we ran through all the available space on 5 threads!)

    Gratitude is the Attitude — Part 5 (168 comments!!!)

    https://epilepsytalk.com/2011/03/30/gratitude-is-the-attitude-part-5/

    Because, as you so poignantly pointed out, that’s what it’s all about.

    So, here we go again….

    Like

    Comment by Phylis Feiner Johnson — April 16, 2013 @ 9:56 PM

  9. I am always having blood tests, it tires me out.

    I just put down my 5 things I am Grateful for on the new Gratitude is the Attitude Part 6.

    I also looked at, I hope I got this right 12 Recipes for Success. I left a comment there too. I will have to look it up to see if I remembered the title of the correctly.

    One that is approiate here is: Laughter is the Best Medicine. Everyone should try to find something funny to laugh about. If you cannot think about something, watch the old movies that are funny. I like Charlie Chaplin.

    Can you tell me something funny? I would like to hear it! We all need something that is fun in our lives. Maybe it is something funny in your life.

    I have quit watching TV.

    Like

    Comment by Ruth — April 17, 2013 @ 4:56 AM

  10. I’m not too keen on tv either. But nothing funny comes to mind either…at the minute. 😦

    How about you?

    Remember the thread “What’s Your Favorite Joke?”

    https://epilepsytalk.com/2011/05/28/what%e2%80%99s-your-favorite-joke/

    It started out with “Laughter is the best medicine.”

    Like

    Comment by Phylis Feiner Johnson — April 17, 2013 @ 8:20 AM

  11. Just laughing will help you, just do it without having something to laugh about and you will feel better. Doing things that are positive, like gardening, try to write poems, etc.

    I have Alzheimer’s Disease (AD) so please everyone overlook anything that I might say that is weird and does not make sense. I have said things to my family and friends that I do not remember and would not normally say. I was diagnosed in 2010. There are only 4 medications and I am allergic to all of them.

    I still have a positive attitude.

    Like

    Comment by Ruth — April 17, 2013 @ 11:18 AM

  12. Ruth, Pardon the thumbs down. I hit the wrong button, by mistake! 😦

    Like

    Comment by Phylis Feiner Johnson — April 17, 2013 @ 3:24 PM

  13. Phylis, it is all right. No need to apologize. That’s easy to do since they are right next to each other. 🙂

    Like

    Comment by Ruth — April 17, 2013 @ 5:48 PM

  14. Gerrie, the library in San Jose is a fabulous library. I remember when it was first built. I went there a lot.
    You must do a lot of reading.
    We are glad to have you here with us. I am not a hero, though.

    Like

    Comment by Ruth — April 19, 2013 @ 6:06 AM

  15. For me success was graduating from high school when all my teachers and advisors said I would never graduate. I then went on and got 2 years of college under my belt. Coming out of a depression like wanting to off myself into a much stronger and wiser person.

    Like

    Comment by Michelle Watts — April 23, 2013 @ 2:18 AM

    • Double Wow, Michelle!

      I still have nightmares that I’m stuck at Forest Hills High School. (I’m turning 60, now.)

      Although I DID get to college — on my own nickle — because no one thought I was “worth” it.

      And I know the sound of death’s “siren song.” It can seduce you and reduce you to ashes.

      Or, with a lot of strength and courage, you can rise above it…wiser and better.

      Congratulations Michelle. I celebrate the fact that you’re still here.

      Stronger. Wiser. And braver.

      Like

      Comment by Phylis Feiner Johnson — April 23, 2013 @ 9:03 AM

  16. Hmmm my biggest success? That’s a tough one because honestly I count them equally- each is different but all were hard won!

    I am Grand Mal free for over 13 years- that’s huge!
    I raised a family while uncontrolled- that’s huge!
    I (because of the GM free) was able to drive across Canada with my husband as the passenger!- again huge!
    Running and participating in support groups- educating not only those inside the community but those outside as well.- again huge!

    I’m not sure there is a biggest- just successes 🙂

    Like

    Comment by Beth N — November 29, 2013 @ 6:35 PM

    • Congratulations Beth. 13 years !! I’m 4 years seizure free, after 50 years of seizures! Thats great that you drove that far WITH your hubby. My wife doesnt like riding anywhere with me, not because she’s worried I might have a seizure. But because she thinks I don’t drive very well. haha

      Like

      Comment by charlie — November 30, 2013 @ 9:39 PM

      • Charlie, well he didn’t have much of a choice…we were moving lol so it was either ride with me or hitchhike 😉

        Like

        Comment by Beth N — December 3, 2013 @ 9:08 AM

  17. It’s BIG, in my humble opinion! 🙂

    Like

    Comment by Phylis Feiner Johnson — November 29, 2013 @ 7:03 PM

  18. Phyllis, you have been a G-Dsend! truly truly. I dont comment on many posts, but i read yours every time I get one. Thank you for keeping us updated and informed about epilepsy. I am new to my 3 year old diagnosis. Hers are uncontrollable.We, the enitre family, are having a very difficult, sad and stressful time with this. I hate to see this “monster” change my child and take over her life.
    But i am more knowledgeable about the subject becuase of the information on your site Phyllis. I commend you and thank you greatly for putting in the time to keep us educated and up to date.
    Many blessings to you Phyllis. I am thankful that you are in my life!

    Like

    Comment by Kelly — November 29, 2013 @ 8:55 PM

    • Kelly it’s the hardest job that I’ve ever had. (Coming from the dog-eat-dog of advertising.) And the best job I’ve ever had.( from $$$ to $0.)

      And it’s purely a labor of love.

      Thank you. And if it’s not impertinent, welcome to our family.

      Like

      Comment by Phylis Feiner Johnson — November 29, 2013 @ 11:29 PM

  19. I agree, laughter is good medicine, so is taking a walk or doing some physical activity. It gets those endorphins in our brain working to help us feel good. A few nights ago, I was feeling very down and not much was helping me to feel better. Then I remembered the website I can haz cheezburger. It has very funny videos of mostly cats, sometimes dogs too. After seeing some of those videos, I was no longer feeling so down anymore.

    Like

    Comment by Darla Holmes — November 29, 2013 @ 9:01 PM

  20. Funny cat videos. You’ve got me there! Just watching Lucy (all 5.7 pounds of her) is like watching a clown or funny video in person (or catdom).

    NOTHING is better than laughter.

    I forget the number, but basically it takes less muscles to laugh than to frown!

    Like

    Comment by Phylis Feiner Johnson — November 29, 2013 @ 11:25 PM

  21. My greatest success was when I was able to write poetry for a few years. Soon, I hope to write poetry again.

    Like

    Comment by Ruth — December 1, 2013 @ 9:05 AM

  22. my greatest success is getting my seizures in control and going back to school to work on getting my associates in art: arts and humanities. hopefully with that i can work towards my BA while having my dream job by working with children who have different disabilities and other types of epilepsy by doing art projects and becoming an instructional aide. 🙂

    Like

    Comment by Crystal Cahill — December 20, 2013 @ 12:51 PM

    • What a success story and what perseverance.

      Hats off to you Crystal!

      Like

      Comment by Phylis Feiner Johnson — December 20, 2013 @ 1:41 PM

      • Thank you Phylis. Perseverance is always going to be in my vocabulary.

        Like

        Comment by Crystal Cahill — December 20, 2013 @ 2:04 PM

      • My hats off to you also!

        Like

        Comment by charlie — December 20, 2013 @ 3:58 PM

  23. My great success was to not let epilepsy bring me down. I was able to drive and work when they were under control. As I got older they started up. I went from having them every 18 months to eventually every 7-10 days. I ended up on disability. When changing meds caused me to only have them while sleeping, I went back to work for another ten years. After the 8th year the doctor wanted to stop the ones I had while sleeping. After changing the meds I had them at all times of the day again. Even though I had them at work and out in public, I continued to have them. I found myself waking up in a hospital on a couple of occasions. I still continued to work. I made enough of a pay to purchase a house. Those would be my biggest successes.

    Like

    Comment by Tony Murray — December 27, 2013 @ 4:01 PM

  24. What a brave man ( and persistent) you are.

    Most people in your situation would have thrown in the towel way before you.

    Why did the doctor think it would be better to stop the seizures while you were sleeping if you were functioning so well during the day? (Relatively speaking.)

    I guess you were caught between the devil and the deep blue sea.

    But you kept swimming until you found shore. And bought a house in the process.

    You must — and should be so proud.

    I’m proud of you and I don’t even know you.

    I salute you for your courage and “can do” attitude.

    Honestly speaking, I don’t know if I could accomplish all you did.

    Like

    Comment by Phylis Feiner Johnson — December 27, 2013 @ 7:16 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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