Epilepsy Talk
Brag a little! What’s been your greatest success? | May 11, 2021
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, I wouldn’t exist.
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About the author
Epilepsy Talk 
My greatest accomplishment has been my 3 healthy kids, my education, my famly, and the fact that I keep fighting no matter what comes my way!
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Comment by Pamela Kohlhagen — May 11, 2021 @ 9:20 AM
Pamela, I know you might find this strange, but I never had the courage to have kids. I just didn’t think I was “Mom” material.
So here’s to all you great moms out there and all the wonderful things you do with and for your families!
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 10:29 AM
You probably have so many silent, grateful readers like me. I read all of your blogs and I cannot tell you how many times they have helped me. My daughter was diagnosed at 6 and has struggled with so many different challenges but she is graduating from college next week with honors and I am so grateful to all those who share their stories to inspire others. You are a gift and thank you!
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Comment by Mary Pat Sullivan — May 11, 2021 @ 9:23 AM
WHOO HOO! Here’s to your daughter. She clearly is a survivor. What a gift she must be. How honored both of you must feel.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 10:32 AM
Tuesday, May 11, 2021
Never, ever give up!
I was born in 1955 and was diagnosed with Epilepsy in 1963, specifically, petit mal with grand mal convulsions, following the Polio Vaccine.
Follow the Money! Lying to the patient and parents/guardians and not giving them ALL of the facts when this diagnosis is new to them has been an ongoing overall practice in allopathic medicine during our lifetime. This is important to mention because back in the early 60’s, we did NOT have access to those epileptic/neurological advocacy organizations to represent us. They were non-existent. We were on our own until later.
What I learned by having Epilepsy was to develop the bumby road to self autonomy. Sometimes it was so bumby I hit rocks, or “large boulders” in life, but I got through it. I believe the learning disability that I had that was never diagnosed was a big challenge for me, but I got through it.
I evolved as a human being with Epilepsy. In an odd way, Epilepsy gave me my personal power I didn’t know I had. I learned to stand up for myself. I learned about being my own person who can think on my own two feet, analyze, be independent-minded and confront someone when they lie to you. I learned about replacing the bad with the good and doing it immediately through my sense of humor. I am now 66 years old and I know who I am because of my Epilepsy.
From the beginning of my life, God knew who I was. All I had to do was listen to Him.
Love to everyone here. I pray for you often. You are my heroes!
Mary Ellen Jacobs (Pennsylvania)
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Comment by Mary Ellen Jacobs — May 11, 2021 @ 9:54 AM
I seldom come across the person older than me with epilepsy….I’m not too far from 60. I hate seeing us referenced as ones with the need to seriously be looked after, as little children. Now’s a good time to let neurologists know we’re not the ones suffering. I plan on viewing a webinar in a couple of weeks discussing this topic.
https://tinyurl.com/4vyrszux
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Comment by Frank Lee — May 11, 2021 @ 11:18 PM
Good for you Frank and your proactivity.
I’m 68 and have not been treated as a child but in my childhood days, was treated like a leper.
Which is worse???
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Comment by Phylis Feiner Johnson — May 12, 2021 @ 8:36 AM
Mary Ellen, you are one brave and resilient lady.
I’m two years older than you and I too grew up in the dark ages where the choice of meds were both horrid. (Pick your poison.)
Except my epilepsy was diagnosed. And I was treated like a leper.
I did not have your fortitude and so I continued on as a victim. Until epilepsy became my “dirty little secret”.
Here’s to you and all the path finders who make their own way with courage and determination!
God bless you.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 10:11 AM
God bless you as well! I went through my first 14 years being considered “normal.” I was in a bus crash that damaged my legs and gave me the concussion that would lead to epilepsy four years later. I just kept pushing as if nothing was wrong, because a lot of people wouldn’t recognize that anything was or all of the pain I was in. It is amazing to me that epilepsy frightens people more than any time I mention all the orthopedic surgeries. If there were more understanding, empathy and a willingness to learn, we wouldn’t have to have a “dirty little secret.”
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Comment by Mary Ellen Gambon — May 13, 2021 @ 5:27 PM
I have been Blessed with many accomplishments. In 2018, I was voted Top 20 Most Powerful Women in Northern NV, but that does nothing for this ailment.
I am 67 and have had seizures for 12 years and they keep raising their ugly head. 3 absence seizures in the last 2 days. I don’t remember any of them, but am told by my husband and family. It is a hopeless, humiliating feeling and I am trying hard to rely on my faith. My daughter wants me to go to UC Davis. Does anyone out there have contacts to UC Davis or know a good neurologist in Reno, NV? I truly have not been happy with anyone I’ve seen.
Phylis, you are amazing with your faith and accomplishments. Thank You for your Blog
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Comment by Doreen — May 11, 2021 @ 10:46 AM
Dr. Shanker N. Dixit, Bangalore Sunrise Hospital, Las Vegas, NV — Epileptologist is the only patient recommended top doc in Nevada on our list. Sorry, that’s the best I can do.
Even though you might not think much of it, being voted one of the Top 20 Most Powerful Women in Northern NV sounds like an important accomplishment to me!
I think going to UC Davis would be quite a coup. And clearly, you’re ready for the challenge, Doreen.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 10:58 AM
Thanks Phylis…Lots to think about. Being voted one of the Top 20 Most Powerful Women in Northern NV was a real honor. Thank You…
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Comment by Doreen — May 11, 2021 @ 11:06 AM
I have been in that dark place several times. The only thing that brings me out of suicidal trends is to get out and help other people. I have been a library volunteer, a part time teacher at the local school and other similar tasks. Even connecting with a friend to go on 2 or 3 mile walks is outside and moving. (She knows all about my seizures. She won’t go on long walks unless someone else is chatting with her and I can’t go by myself!
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Comment by Maralou Higgins — May 11, 2021 @ 12:09 PM
People contact, socializing and close friends are mandatory in surviving and having a positive attitude. Recently my husband and I joined a once a week bible study and a few of us girls get together for coffee afterwards to discuss what we learned and our thoughts pertaining to life. I am also becoming more verbal about having epilepsy, so it is not a deep dark secret. When you open that door it is surprising to know how many people know someone who has this. The scary thing is having my own design business and my clients. It has not been an issue, but I am slowing down for stress is an issue.
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Comment by Doreen — May 11, 2021 @ 12:37 PM
Obviously, you, know who you are and what you need. Per your design business: I would listen to my gut.
Socializing is manna for most of us. And I think the desire to be creative is abundant.
It’s all part of social interaction, which is a very important goal.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 12:42 PM
Well, getting out of myself was caring for and about others. That’s how Epilepsy Talk was born!
As always, it’s good to have a positive focus. I agree with you, Maralou.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 12:30 PM
The greatest accomplishment I can think of came at the start of my working career. School was so hard that I wanted to find one subject to excel at so I wouldn’t sell myself short because I wasn’t good at many things. That subject was math. I wanted to be so good I could figure out problems in my head.
So when I turned 18, I got my first job as an auditor at a bank. Before I got the job, I had to take a test and one part was math. They had 90 questions and I had 10 minutes to do as many as I could. After 7 1/2 minutes, I gave the lady the test back. She looked puzzled and said, “Are you done?”. I asked, “Why? Has no one done it this fast?”. She said I was the first person to finish the test. Then she told me I got every question right.
The next year I got a job at another bank. I once again took a math test. This time with 80 questions, I was done in less than 10 minutes again. Then I learned I was the first person to finish their test. Once again I got very question right. The funny part of this test is about 10 years later, someone else finished their test and they told him he was the second person to finish. He said, “I know. The first one was my Uncle Ed.”. Yes, it was my nephew who I taught how to do math.
My talents were limited but at least I excelled at one of them.
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Comment by Ed Lugge — May 11, 2021 @ 1:28 PM
I knew you were a math champ but never before the uncle of a champion, too.
Do you suppose it’s genetic or just excellent teaching? 😉
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 1:34 PM
My oldest son can do square roots, too, so one son excels and the other two are very good at it.
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Comment by Ed Lugge — May 11, 2021 @ 1:48 PM
Wow! What a talented family.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 1:50 PM
This is such a wonderful topic, Phylis. Thanks. I was literally thinking and praying about my greatest accomplishment with the drone of the lawn mower going as I cut the grass. Soon my son and I are going to go pick up a rental van for our whole family to take a vacation. And I thought “Wow, well that’s it.” There were years I couldn’t drive and some when cutting the grass was virtually impossible due to my lack of concentration and clumsiness. It’s these things that I’ve finally – and I mean finally – learned to accept. It has taken me almost ten years to grieve the loss of my health, which had the domino effect on all other parts of my life. As I took to writing a journal years ago to simply fill some time, it became clear to me that I was learning how to grieve. Going from Denial to Acceptance has been an agonizing journey. It will continue to be. But something happened along the way. People who had lost their health or their job or their marriage or just lost came to me. There was integrity. I had gone from everything being a competition and having to win to loosing and accepting that. My great accomplishment? Loosing. We’ll see where that journey goes. But for now I’ve got to go pick a rental van and take a vacation with my family. That will be quite an enjoyable journey in and of itself.
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Comment by George Choyce — May 11, 2021 @ 2:41 PM
Oh but George, look at all you’ve gained. Acceptance and the confidence to help others who might be lost without your wisdom.
Insights that come from your journey and will continue to grow.
You are truly a blessing.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 2:47 PM
When I thought I was invincible & life seemed a smooth ride to limitless possibilities in my career of computer industry that I performed successfully, the very begging of the arduous journey to understand & accept the mistry behind the neurological disorder that started knocking me out of no where to wake up in hospital beds every few weeks begun to strike me 20 years ago.
But knowing nothing about Epilepsy & having no experience with seizures, ignoring, denying & covering up the mistry behind my neurological disorder was the only best defense mechanism I applied to avoid any unwanted attention to my medical difficulties I never thought would be chronic & keep coming back to expose my deep little secret in front of my family, friends & coworkers.
Then came the time that I thought I was better off dead than having to watch my life come crashing down by epilepsy for the whole world to see.
The tormenting humiliation was so unbearable, in the desperate search to stop my seizures on their tracks, I discovered EpilepsyTalk, where people like me talk, discuss & share their experiences for the same medical hardships I was going through & I learned to accept the predicament I had to live with.
Having made it this far, I’m totally astonished I came a long way & learned how to live with my seizures, thanks to ALL of you who thought, inspired & encouraged me to carry on with my life.
Gerrie
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Comment by Gerrie — May 11, 2021 @ 4:03 PM
Gerrie, as you implied, epilepsy was my “dirty little secret” which I shared with as few people as I could.
I was damaged goods and wasn’t about to proudly parade my “condition”.
And yes, I thought it was better to die in life than to live in death. So I cowardly chose the death route.
As you can see, I didn’t succeed and although it was a long journey, Epilepsy Talk was the child of that suffering.
Not to sound hokey, but it was sort of like being reborn.
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Comment by Phylis Feiner Johnson — May 11, 2021 @ 5:02 PM
My greatest “accomplishment” was TELLING my now FORMER “dr” Samir Bangalore, “I want to find out if I’m a candidate for Right Temporal Lobe Brain surgery or I’ll find someone who will.” After he fell off of his golden office throne, he says to me after more than 20 years of Gran Mal seizures, most of which requiring being rush to the ER by ambulance, & I’m quoting Sami here: “You don’t really even HAVE Epilepsy, you JUST have a seizure disorder.” I’ve had the surgery & have been seizure-free since, I wish I’d have had this surgery at least 20 years ago!!! Sure is going to make me enter any & every Neurologists office I ever do again with a VERY closed mind!
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Comment by Danny Wadsworth — May 11, 2021 @ 10:43 PM
Epilepsy is often defined as a “seizure disorder”. It’s just a matter of samantics.
Obviously, this guy had rocks in his head and didn’t have a clue.
But you did overcome his stupidity and I congratulate you for that, Danny.
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Comment by Phylis Feiner Johnson — May 12, 2021 @ 8:31 AM
Well one of my biggest accomplishments is just being alive, but I give my medical team credit for that. I was brought back after flat-lining and being placed in a medically induced coma for a month in 1995.
Personally, I am proud that I am able to be a newspaper reporter covering 15 towns without being able to drive a car. I write for three chains and have consistently won “story of the week.” This means a lot, especially during the pandemic. Epilepsy has motivated me to shatter the stereotypes.
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Comment by Mary Ellen Gambon — May 13, 2021 @ 9:19 AM
Wow! Good for you! I know only too well what it is like to not have a car and your own business. Like you I am an Interior Designer and travel to many cities in my area. Thank God for my team of Angels that would drive me to my projects. I kept it a secret as I plugged along and have won Best Interior Designer in our area for many years. It is encouraging to listen to other people who are inspired to move on and grow with a disease that carries so much stigma. I have been to chiropractors for years on dealing with migraines. They saved me from having brain surgery. Recently I met a Chiropractor who had seizures from a teenager into his late 30’s, he referred me to a Atlas Orthogonal Chiropractor who cured his seizures. Because I continue to have break thru seizures, I am giving this a try. Is anybody out there familiar with this method?
God Bless You on Your Journey…
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Comment by Doreen — May 13, 2021 @ 12:20 PM
I wish I could say I was familiar with Atlas Orthogonal Chiropractics, but I sure can recognize an over-achiever like Mary Ellen. 🙂
Wow lady, you are something else. Talent, grit determination. Maybe I can be like you when I grow up. (Unfortunately, I’m 68. Maybe I can be like you in my next life.)
Yours is an example worth aspiring to. One that I’m sure makes you and all those around you, very proud.
I feel honored just to know you.
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Comment by Phylis Feiner Johnson — May 13, 2021 @ 2:20 PM
Hi Doreen, I am so inspired by you! I am so glad you found a way through as well. It is such a challenge. I was let go from a couple of jobs because I have epilepsy, so I was always afraid to disclose. Then my first of four freelance positions came out of the blue. I met my future editor at a community meeting when I happened to say to a friend, “I wish I were a reporter again!” as I was taking notes. He ran up to me afterwards and asked me why I didn’t apply for a job. I replied, “Your ad said, ‘Must have car, no exceptions.'” He asked me who wouldn’t have a car in Boston. I told him simply, “A woman who can’t drive because she has epilepsy.”
He dragged me over into a corner and said, “Hey, i don’t give a …. if you have epilepsy. You’ve got chops! Send me your resume and three clips tomorrow.” And that started me on a four-year role with four positions. It’s a challenge, and I pay for Ubers, but I feel fulfilled.
I which I knew more about the chiropractor. It sounds really promising.
You are a Wonder Woman! God bless you as well!
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Comment by Mary Ellen Gambon — May 13, 2021 @ 5:20 PM
Mary Ellen, I am so touched by your story, it brings tears to my eyes. What a courageous women to work from Uber.
Thank God for the Angel/Angels in your life! In response to your redesign of a major town intersection to make it safer for people for disabilities. There was a mid-west small town I was in that had a 4-5′ flashing light in the middle of an intersection. I loved this for it was so obvious for traffic and it felt safe for the pedestrian, especially for handicapped people. Some can be set-up to come on automatically as the person approaches the intersection or a button to push on a pole to ignite the flashing red light that we have all seen at crosswalks. Perhaps it could have a talking voice that would welcome them.
Years ago I went to a Hospitality Design Show in Chicago. A few days before I was to leave I had fallen and tore the ligaments in my ankle and was in a cast. My husband was insistent that I go and that he would go with me and wheel me around in a wheel chair. This was an incredible experience. First of all, I had my name and business badge on and the showroom reps ignored me as though I was invisible, but they talked to my husband who knew nothing about design. I experienced first hand what it felt like to have a disability and this was before I had seizures. People need to be acknowledge, they are not invisible. This goes under customer service skills. It is an opposite feeling with epilepsy where we don’t want to be noticed for this ailment.
I will keep you informed about the results of Atlas Orthogonal Chiropractic’s. I am 67 and these seizures are taking an emotional toll on me. God Bless…
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Comment by Doreen — May 13, 2021 @ 8:14 PM
Oh Mary Ellen, you’re such an over-achiever. I say that with my tongue in my cheek, knowing you well in addition to your accomplishments and advocacy.
You are a beacon in your community and can inspire all of us with the refusal to give up against the odds.
With love and respect…
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Comment by Phylis Feiner Johnson — May 13, 2021 @ 9:24 AM
Phylis, thank you so much! You have been an inspiration to me and have encouraged me to beat the odds. And I have good news! I have been working with a Boston City Councilor on the redesign of a major town intersection to make it safer for people for disabilities where I used to live. He asked me to contribute language for a line item in the city budget! Moving forward to help everyone!
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Comment by Mary Ellen Gambon — May 13, 2021 @ 5:12 PM
Pretty soon, you’ll be running for office. And giving all those goons a run for their money.
YOU GO GIRL!!!!
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Comment by Phylis Feiner Johnson — May 13, 2021 @ 6:32 PM
Love you, Phylis! Too bad I moved, LOL! The district councilor I was thinking of running against just said he wouldn’t run again. Maybe I can be the “power behind the throne” for someone new. Or keep using the power of the press. You are the best!
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Comment by Mary Ellen Gambon — May 13, 2021 @ 6:36 PM
Should you be president of our fan club or should I?
Kudos to you, my friend!
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Comment by Phylis Feiner Johnson — May 13, 2021 @ 7:01 PM
Knowing God & Jesus Christ. If it were not for seizures in my life, & my mother & grandmother, I would not have had the faith that I have today, even there are times, mainly after a GRAND MAL happens, that I wish I was dead, after living through another time span of 5 to 15 minutes, wondering if this is it, and is DEATH about to happen after 60+ years of what I call a wasted life. It’s never been wasted since I know now how God has used me in ways as I have gotten older, that when in my teens & 20’s, 30’s 40’s & even 50’s I’ve seen some of what God has been doing, even though I’ll never understand it. To say that if seizures were not ever a part of my life, I maybe or would had done some other things that maybe I would have been worse off today, than what my life has been & is today. PROVERB 3:5-6 was an early verse for me to claim, along with Psalm 32:8, Psalm 27:14 & MARK 11:24 as later came verses like MARK 9:29, ROMANS 8:26-31, & other verses I can list along with the entire book of JAMES, as it says ”faith with out works is dead.” Had I not listened to my brain about at age 4 I would never know now 56 years later all I know today, as our brain WILL HELP US IF WE LISTEN TO IT, but to ignore things & just think KA SARA SARA, WHATEVER WILL BE WILL BE,, wont help nobody if all we do as works is to trust in TAKING drugs, LISTENING to doctors, & DOING what others say me have to do. That didn’t work for me at age 4, & at almost 61, the works of actions from what others say we need to do, does not effect the lives of those WHO TELL US WHAT TO DO, but it effects US MORE ONE WAY OR ANOTHER, and we all do that more than listening to our own brain WHEN IT SPEAKS, as I say it does speak every time seizure activity happens, from the ways it’s been treated , as it seems to be getting abused in many ways between the times of the seizures when they happen. It’s also been damaged as well, from the decades or maybe just weeks or days, when something started the seizures in an innocent babe & the brain cycle never changes to be a real & normal developed brain after 17 to 21 years now is what is being SAID as to the time a human brain takes over 30 years now to develop 1 healthy & normal brain. So NO WAY do I ever have anything that I know & knew now for over 55 years WHAT CAN or WILL develop bad brain health activity. THAT is what I call having God to show me what will not be bad for me to have in my life. And also show me as what GOOD to add to my life, so that my brain can be part of the rewarding things that it will feel good about & have some peace of mind as well.
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Comment by James D — May 15, 2021 @ 9:11 AM
I admire and envy your faith.
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Comment by Phylis Feiner Johnson — May 15, 2021 @ 9:13 AM