Epilepsy Talk

What would you do if you knew you couldn’t fail? | December 5, 2011

All of us have dreams. Some become reality…and some stay in our imaginations.

For me, writing was my “dream”.  And it became a reality when I discovered a way I could write without starving. 🙂

Not with photography. Although I was enthusiastic about it (and pretty good…I even taught 5th graders, which was a blast), I knew I’d never be a Brassai or Ansel Adams.

Third, there was the dream of becoming a ballerina. No competition for Margot Fonteyn, because when I twirled and swirled, the result was not pretty…passed out on the floor. (I had epilepsy, but that didn’t diminish my dream.)

How about you? What have you dreamed — or achieved — beyond your wildest dreams?


50 Comments »

  1. As a kid, I use to lay on back under the red wagon and play with rusted nuts and screws like I was a mechanic working on a car..
    Even thought epileptic were suppose to stay away from moving or mechanical objects…….I’ve been a certified Mechanic since the 80’s.

    Like

    Comment by mkfarnam — December 5, 2011 @ 6:15 PM

    • mk, Are you on Facebook? If so, please, visit the EP Land Group. 🙂 An ‘auto mechanic’ had a seizure after 20-30 yrs seizure free. He is Stressing, Big Time, over the loss of his job. He feels his seizures are Stress Related, but, can’t get DRS to agree to him going back to work. If you aren’t on Facebook I can post his email addy. 🙂 Would you Mind talking w/ him? HUGS!

      Like

      Comment by candi — December 12, 2011 @ 12:19 PM

  2. But that doesn’t answer the question or the topic.
    “What would I do if I knew I couldn’t fail”
    Actually, after going through life being what you wanted to be ….finding out what it was really like….that’s a good question.

    If I knew I wouldn’t fail…..I would liked to have been a father. Which I never was. I was a step-father, but the kids lived somewhere else.
    Being a self-employ Mechanic took up too much of my time………………………………or am I just using that as an excuse?

    Like

    Comment by mkfarnam — December 5, 2011 @ 6:38 PM

    • Well I was never a mother. But I didn’t want to be. I had no positive role images to follow…and I didn’t want to screw up a kid the way I was.

      I didn’t want to get married either. (No marriage, no need to have babies. Plus, everyone in my family is divorced at least once.)

      But here I am, 32 years married. And THAT was truly beyond my wildest dreams!

      Like

      Comment by Phylis Feiner Johnson — December 5, 2011 @ 7:11 PM

  3. I never thought I could what I did this March, and that was to publish a book. Well, admitted, it’s self-published, but hey, published is published, right? And Amazon and Barnes and Noble are selling it. So I feel great about that. I might even want to do another one.
    Other dreams I’ve had along the way: Be a ballerina, doctor, nurse, equestrienne.

    Like

    Comment by Maggie — December 5, 2011 @ 7:06 PM

    • We could have twirled around together! 😉

      But quite seriously, I admire you a lot Maggie. Although I can write, I don’t have a book or even a short story in me.

      Is it lack of attention span or lack of talent? I don’t know…

      Like

      Comment by Phylis Feiner Johnson — December 5, 2011 @ 7:14 PM

  4. I have managed to be physician with epilepsy. The seizures started on middle of my medical school stay coz I have to sleep longer period,take a high dose of sedative drug and see my grades falling. But I had to persist with hope of reaching the other epileptics in need of treatment. It was shockin for me too see epileptic patients who fell into fire due to seizures in burn units but now I feel that I can help them and I take it as success story.

    Like

    Comment by Negeo Tesfaye — December 5, 2011 @ 9:54 PM

  5. I always want to congratulate everyone!

    I tried being a police officer, I started off as an Explorer Scout and my parents were thinking, “rationalize about this?” I thought being a teenager I can do anything! In college I became a Police Cadet. I loved it. Stress came upon me and seizure tagged me and I was asked to leave.

    The Neurologist at the time told me how intelligent I was and what would I like to do. He put me to the challenge of being a nurse or Neurodiagnostic Tech. I became a Neurodiagnostic Technician. I did it for 20 years until my seizures got out of control. I love the patients. I worked w/ neo-nates to people of all ages.

    I ended up in research of dementia. I applied what I learned in college like statistics to this job. I asked questions to patients daily and read a lot of data. It was challenging but enjoyable. Worked w/ grants. You were under stress but you prayed the grant would be continued so you would have a job.

    When I was a child I wanted to be a nurse, this job fills my dream! I love listening!

    Like

    Comment by Toni Robison — December 5, 2011 @ 11:43 PM

  6. As a child I wanted to be a writer, live on a farm and have twelve kids. But like Phylis I didn’t have any positive role models. I’ve never published anything and I still dream of the farm. I had one miracle son before ending up with uterine cancer.
    My son is 18 and off pursuing his own dream of becoming a firefighter. My 17 year old step daughter will soon be off pursuing her dream of becoming a neurosurgeon. I couldn’t be more proud of both of them.
    To answer your question… If I knew I couldn’t fail I would make epilepsy as mainstream as cancer. I would make more money available for research. And being a HUGE football fan, I would have them all wear purple in November like they wear pink in October for breast cancer!

    Like

    Comment by Cari — December 7, 2011 @ 8:40 PM

    • LOL! I hate the color pink…but I’d hate to have breast cancer also. But, like you, if it was up to me, epilepsy would get the same as Autism, Parkinson’s, MS, Alzheimer’s per patient: They get $200-$400 per person in research. Epilepsy research gets about $35 per patient.

      Like

      Comment by Phylis Feiner Johnson — December 7, 2011 @ 8:46 PM

  7. if I knew I couldnt fail, I would travel to germany and live there. If I couldnt fail, I would meet and marry a german here in the states man with true love. I dream of having 1 girl child.

    The question would be, how would I get them?

    Like

    Comment by jennifer — December 9, 2011 @ 3:52 PM

  8. Why Germany…or a German man? (The daughter I can understand!)

    Like

    Comment by Phylis Feiner Johnson — December 9, 2011 @ 3:56 PM

    • my family is german. I would like to be able to use my first language, english was my second.

      Like

      Comment by jennifer — December 10, 2011 @ 12:00 AM

  9. I did have a dream of working in a hospital. It just happened to be volunteering, just not with patients. I will though, if I persist in looking.

    I dreamed of dancing, it just happened to be swing dancing. It did take a long time to find one, though.

    I dreamed of working with animals, it hasnt happened yet.

    It is strange, but last week, I had an urge in speaking at my church, Just didnt figure out in what way. I had not done it.

    I got a new dream, of speaking in front of people, dont know yet where, or about what.

    Im thinking maybe provide support to those in need of it. Maybe those that also have epilepsy.

    Like

    Comment by jennifer — December 9, 2011 @ 4:09 PM

  10. Your doing all those! Or close to achieving them.

    Like

    Comment by Phylis Feiner Johnson — December 9, 2011 @ 5:05 PM

    • I really like to spend time with the elderly. I had at one time helped assist with activity time, at a retirement home, but was asked to not come back due to the seiz that I had. The patients didnt mind them, it was the care workers that couldnt tolerate them. I had back then provided my music skills, and company.

      I am visiting a church member, there on sunday every week after church, though.

      Like

      Comment by jennifer — December 12, 2011 @ 3:22 PM

      • It’s ironic that the patients didn’t mind, but the “care” workers couldn’t handle them.

        Like

        Comment by Phylis Feiner Johnson — December 12, 2011 @ 4:31 PM

  11. I don’t recall any dreams of ‘doing something’ w/ my Life. I have No Clue Why I even went to college. I was married 5 mths later. I was ‘content’ being a wife and Loved My Daughter. I thought That was Why I was Here on Earth. I didn’t Dream of how Life would Change. Overnight. As a single Mom, again, I had no Dreams. Only a Need to support myself & my Child.

    After I joined the Air Force, 4 yrs later, I Did Have a Goal. 🙂 To get an Education. I wanted to become a Counselor. My ‘dream’ was dashed by Seizures, the med side effects & Ignorance about a Lot of Things! I became re-married & remarried Again. 5 yrs later, I Finally found a Way to Follow my Dream. 20 Yrs ago, I found WebMD Epilepsy Support Group. I started Learning Everything I could until I Felt I knew enough to Counsel & Advise Others’. I may not be a professional ( the Way my Brain is Now, No Hopes of ever being One, 🙂 ) but, I can, hopefully, teach others’ so they Won’t be as Ignorant as I was. Hopefully, they Will pursue Their Dreams. 🙂

    Like

    Comment by candi — December 12, 2011 @ 12:47 PM

    • First of all, I am so sorry that your dreams of joining the Airforce were destroyed.

      Secondly, I have to admire you for making lemonade out of lemons by becoming so thoroughly educated and such a terrific advocate. I admire all you contribute to us and do for others.

      Thirdly, you are far from “not” professional. The knowledge you’ve amassed from all of your research (including RECENT research) is as much or more than a neuro would be able to keep up with and maybe even care. It’s not about a degree. It’s about your passion and dedication.

      And we are grateful for all you are able to share with us.

      Like

      Comment by Phylis Feiner Johnson — December 12, 2011 @ 2:51 PM

  12. Well, Ditto! 🙂 You are one H*** of a Lady to keep up with. 🙂 🙂 Between me & you, I think w/ what We have Learned, we could probably do our Own Seminar. 🙂 Now, That would be Dedication & Passion! :0 😉 🙂

    Sharing is what we do Best. 🙂 Just in our own ways. 🙂

    Like

    Comment by candi — December 12, 2011 @ 3:05 PM

  13. Guess what? I just started an Epilepsy Support Group two months ago at a local hospital! (And Charlie has one starting in January!)

    It was quite a long pull, but the gist of it is that it’s sponsored by the local EFA and we have a real, live epileptologist moderating. One who’s even on my “Best Docs” list.

    I’m the “facilitator” but boy, what I had to go through to make it all happen…

    Like

    Comment by Phylis Feiner Johnson — December 12, 2011 @ 3:31 PM

  14. I Knew you Could/Would Do It! Whoohoo! Congrats to you & Charlie! I Hope you Both will keep us updated. 🙂 I sure wish Vegas was Closer. 🙂 I’d join Angie & her Group. 🙂 Big Difference between on-line & in-person. 🙂 I’m Sure! 😉 HUGS to Both of You. You Can/Will make a Big Difference in Someones Life. 🙂

    Like

    Comment by candi — December 12, 2011 @ 3:41 PM

  15. It was a struggle. Geez, you’d think I wanted to start a prison camp! But the end result is the most important
    …and it happened!

    Like

    Comment by Phylis Feiner Johnson — December 12, 2011 @ 4:47 PM

  16. I would have studied to to be an emt for parmedic. Since I was a kid I always fasincated with that. Line of work. Another thing is art. I like to draw freehand. Maybe learn to do it professionally.

    Like

    Comment by vickieroy — December 20, 2011 @ 2:18 PM

  17. Being a Paramedic is sort of ironic, considering the way many epilepsy patients are misunderstood or mistreated.

    The art part I think, if you stick to it, you can succeed. After all, I’ve been a writer for 33 years! Don’t give it up!!!!

    Like

    Comment by Phylis Feiner Johnson — December 20, 2011 @ 2:29 PM

  18. if I knew I wouldnt fail, I would sing louder in choir, not be nervous playing guitar for others. I would travel around the world. Open a bakers chop, I love to bake, and am good at it. I bake for my 2 friends, as well as for my church sometimes.

    Like

    Comment by jennifer — January 13, 2012 @ 4:47 PM

  19. Well Jennifer, you know you have the singing and guitar talent already. All you need is a little confidence.

    And why not bake? It would make wonderful gifts and thoughtful gestures.

    Here’s what my friend Marianne is doing:

    Lil’ Bite Delites

    http://www.facebook.com/home.php?#!/pages/Lil-Bite-Delites/191501524220919

    Like

    Comment by Phylis Feiner Johnson — January 13, 2012 @ 8:26 PM

  20. cook

    Like

    Comment by eman — February 14, 2012 @ 5:44 AM

  21. i am new here i say cook i lost my career do to this i used to work at disney and some other jobs as cook, sous chef or resturant managet. Now on disability. its just too dangerous in the kitchen for me. i have had sez at all my jobs.

    Like

    Comment by eman — February 14, 2012 @ 5:48 AM

  22. I’m sorry to hear that eman.

    But how about working for a caterer? Then you could work at your own pace (less pressure since most of the food is made in advance) so you’d be “invisible” if you had a seizure!

    Like

    Comment by Phylis Feiner Johnson — February 14, 2012 @ 2:56 PM

  23. Hi, there is a class on learning how to decorate a cake at my local hobby store. My dreams to learn. !!!Im going for it.

    Like

    Comment by jennifer — February 14, 2012 @ 8:27 PM

  24. I checked the dates and price and how many weeks the cake decorating is. there are 3 levels, each level is 4 wks. A resonable price. I will have to wait till march if I will do this. Also hope its not on one of the days of my music or hospital volunteer.

    Like

    Comment by jennifer — February 15, 2012 @ 12:14 AM

  25. Listen, you could skip a day or two of your music or volunteering.

    I have to skip an Epilepsy Support Group of mine because it’s my anniversary. People will understand.

    Like

    Comment by Phylis Feiner Johnson — February 15, 2012 @ 12:50 AM

  26. The class is every week for a month. I dont know what day of the week it will be. It hasnt started yet. I will have to wait till closer to march.

    Like

    Comment by jennifer — February 15, 2012 @ 3:12 AM

  27. if I knew I wouldnt fail, I would get a job working with the elderly or the mentally challenged adults or children.

    I know that I havent had a seiz in 2 days, but am an emotional wreck.

    If I knew I wouldnt fail, I would not be afraid of being more open or afraid people would reject me. In jobs, or in relationships.

    I would trust and be patient in what God has for me.

    Like

    Comment by jennifer — April 25, 2012 @ 2:54 AM

  28. Jennifer, you have risen to the ocassion many times..and succeded, until fear or ingorance stepped in your tracks.

    Please, don’t give in now. Try to be more open. This is your opportunity to explain to people what epilepsy is.

    Educate them. Take them out of the middle ages. Don’t let them get the better of you.

    You have spirit, courage and moxy. Don’t give up now!

    Like

    Comment by Phylis Feiner Johnson — April 25, 2012 @ 2:21 PM

    • Its just my sister will get married soon, and so i jusr threw myself down in the dumps, and felt sorry for myself. Im not doing anything where I am around other young people, just older ones. Ill try harder.

      Like

      Comment by jennifer — April 25, 2012 @ 2:35 PM

  29. I can see why you’re depressed. Sometimes just the fact that your sister’s getting married (and not you) is depressing.

    But you ARE doing things with younger people. What about your music and the swing dancing?

    Like

    Comment by Phylis Feiner Johnson — April 25, 2012 @ 3:14 PM

    • im still playing music, but have put dancing on hold because I have been falling every wk. Since I havent fallen recently, I may go back this saterday.

      Like

      Comment by jennifer — April 25, 2012 @ 11:00 PM

  30. That a girl! Don’t give up!

    Speaking of which, I have a broken foot…from falling when missing the last step at the post office. 😦

    Like

    Comment by Phylis Feiner Johnson — April 25, 2012 @ 11:51 PM

  31. right now, I dont know what I would do if I knew i wouldnt fail.

    I fell yesterday and ended up with 7 stitches on my forhead.

    I guess, I would work with mentally chalenged adults or children. I used to work with the challenged adults. I loved that job.

    Like

    Comment by jennifer — April 29, 2012 @ 5:20 PM

  32. Oh Jennifer, I’m so sorry to hear that. I don’t know what else to say, except keep your head up (literally?) and keep doing the great stuff you’re doing.

    Like

    Comment by Phylis Feiner Johnson — April 30, 2012 @ 2:11 PM

  33. saterday, was when I went with some friends to eat out before we were to go dancing, but I never did get to go, because I ended up going to the hospital. They were so nice to skip dancing to go with me to the hospital.

    I just hope that I will not get a nasty scar.

    I never did go to my last cake decorating class today. I had a head ach, and just didnt feel like resting. I will finish the cake at home and take it to church choir wed., share with friends.

    Like

    Comment by jennifer — April 30, 2012 @ 6:16 PM

  34. It’s wonderful that you have such great friends who will stand by you through thick and through thin. Those are few and far between — with epilepsy or not.

    Treasure them!

    Like

    Comment by Phylis Feiner Johnson — April 30, 2012 @ 10:26 PM

  35. Ever since I was dxed in the early 80’s and told never never never *they sure tell kids a lot of nevers* I became determined to do each and every one of those things and give “them” all a raspberry as i conquered each goal.

    Contact sports??- check- football!
    Drive- check- all the way across North America!!
    Work full time at a stressful job- check- tons of them!
    (most recent being on a cattle farm and being the one responsible for helping the boss “pull calves” oh and I run tractor too)
    Seizure free- check! 13 1/2 years GM free!!

    Failure never entered my mind- I was raised- as long as you try and keep trying you never fail!

    Oh and managed to raise 2 sons without losing my sanity!! lol

    Like

    Comment by Beth N — December 23, 2013 @ 11:42 AM

  36. Beth I salute you, for your perseverence, your courage and yes, your sanity! I think you’ll enjoy something I wrote:

    Damaged Goods

    There’s something liberating in being expected to fail. No expectations, no explanations. After all, “you’ll never amount to anything,” you’re damaged goods.

    So you’re free to fall on your face. Or reach for the stars. I did both.

    When I didn’t make friends, it was expected. Who would want to hang out with me?

    I flunked out of Science and French. No big deal.

    When I was awarded first place in a writing competition and had to read my essay in front of the governor, everyone was stunned.

    Boys headed for the hills after just one date. Well what did you expect?

    I jumped off the roof at college. Poor thing. “You’re a sick girl.”

    Then I graduated from college Magna Cum Laude. They couldn’t believe it. No one came to my graduation.

    I keeled over at work. “See? We told you that you couldn’t hold a job.”

    Then I got the job of my dreams. “It must be because you were lying to them.”

    Promotions came easily. They didn’t know what to say.

    I met the man of my dreams. My father had a stroke.

    I was the only one in two generations not to get divorced. I rejoiced.

    Phylis Feiner Johnson

    Like

    Comment by Phylis Feiner Johnson — December 23, 2013 @ 3:48 PM

    • Phylis that is wonderful!! I like that!

      Funny how when we do not succeed as others think we should they make excuses but when we succeed they say bad things…..

      I will never understand human nature….or rather ..the nature of some humans…

      Like

      Comment by Beth N — December 23, 2013 @ 9:13 PM

  37. They DON’T want us to succeed because of their own prejudices. Pathetic but true.

    But, here’s looking at you kid. And all the stuff YOU do.

    Like

    Comment by Phylis Feiner Johnson — December 24, 2013 @ 9:46 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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