Epilepsy Talk

Epilepsy — A Dirty Little Secret? | May 3, 2020

Why would you say: “I have epilepsy.”

To be included — or excluded?

To be accepted — or rejected?

To be understood — or misunderstood?

To be loved — or laughed at?

I’d say, all of this — or more.

Epilepsy is either a grace — or a dirty word.

It’s all a matter of how you look at it.

And how you say it.

Speak up. Speak out. Shout!

Let the world know.

I am me. No matter what you label me.

I have a voice…a life…and a heart.

You can help me or hurt me.

You can ignore me or plead ignorance.

But I’m not going to go away.

 

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70 Comments »

  1. Not a little secret, neither is it dirty, or dirtier than arthritis or asthma. Take asthma. Sometimes people with asthma have sudden, critical needs. Better their friends should be prepared, not taken by surprise. Where is the inhaler, and so on. My own epilepsy inconveniences mostly me, there having been no grand mal seizures, so there’s little need for help – unless there will be flashing lights. Then I may tell my companion, this is not going to work, and here’s why. Not everyone needs to know. It takes a certain amount of experience and sifting.

    Liked by 3 people

    Comment by HoDo — May 3, 2020 @ 1:45 PM

    • I agree that it takes a lot of experience and sifting.

      And there are those who find out who don’t want to know.

      Like the time I was is a lab with a marble table top and pitched forward. Someone had the foresight to catch me. He was scared. Too frightened to want to know.

      Or the date when my head crashed through a wooden chess board. I found out the hard way, when they thought I was dead.

      It wasn’t util I was more comfortable in my own skin that I began to tell people.

      But the price was high, both ways.

      Like

      Comment by Phylis Feiner Johnson — May 3, 2020 @ 2:07 PM

      • Yes, some illnesses and disabilities are more expensive, emotionally and otherwise; and more expensive to women than to men. At least in this forum we are beginning to discuss how to level things out.

        Liked by 3 people

        Comment by HoDo — May 3, 2020 @ 2:23 PM

      • Afterthought: a fellow in my sobriety group said, “I am not my brain.” We were discussing labels we give ourselves and each other. There is a strong identification, for many of us, brain with self. Or brain activity with self.

        Liked by 2 people

        Comment by HoDo — May 3, 2020 @ 2:27 PM

      • I am my brain. And my brain is me. Both of which I’m proud of and don’t hesitate to explain.

        Liked by 2 people

        Comment by Phylis Feiner Johnson — May 3, 2020 @ 2:50 PM

      • Yes I also have had numerous amounts of broken bones, bruises and HEAD STITCHES!! But being me I just suck/sucked it up and keep going. Now it’s more to show my friends, husband and children it’s no reason to give up. Just take a break and heal a bit then keep going. Although now a days it’s a bit more challenging then before.

        Liked by 2 people

        Comment by Kathy S.B — May 4, 2020 @ 12:31 AM

  2. What you’re explaining I think is how those in the rest of the world who live with out them having & living with epilepsy & seizures maybe daily, will judge & rule for or against us according to what they know about it. What is worse than that though, are those who say they can RELATE & UNDERSTAND US, and they judge us more harshly, especially when WE WHO HAVE SOME DIFFERENT ”’root cause/s or tiggers of how WE know when I seizure could happen”’ gets treated & totally rejected & excluded, laughed at & misunderstood so much that they IGNORE what we are saying so that WE are not part of this so called 65 + MILLION who have epilepsy & some of us has had it for life, & OUR WORDS MEAN NOTHING TO THEM. If they did mean ANYTHING to a few people,, ”maybe” our words & experiences would have had some power & a few people would by now after 50 years can easily understand WHAT we go through, but they can not nor will ever desire to UNDERSTAND US like me, because maybe that would threaten their ways to TREAT many seizure conditions in the future, and you NEVER mess with a money making SCAM & HOAX where the same tests over & over & over again & again & again gets the same ride from different neurologist, for everyone who decides to see any different neurologist in the future. N I H proved that to me in 2000, as I expected a totally new way to help me after 40 years of the HELL LIFE, but all tests there were done as my previous 40 years were done. Now 19 years later,, NOTHING has changed & I and my experiences of having seizures for over 59 years, will never be accepted or understanding of my sufferings by any new neurologist, in their worlds of treating the SYMPTOMS of the problems. There needs to be a SHUT DOWN just over neurological conditions in the USA, id this CODEX-19 is to be a pandemic, I do not have the word for ALL brain conditions we have here in the USA. For SURE, the MSG, ASPARTAME, NITRATES & NITRITES WORLD has damaged more brain from the ”saturating” of them in our daily BBB Blood Brain Barrier that does damage brain cells & harm brains over time. But it is IGNORE IGNORE & IGNORE, as we do not count or are a PART OF what matters to them. People can have seizures daily from these toxic additives & chemicals we consume DAILY & people do not know that. BUT I can affect 1 person who will make 20 more sick. So WHY hasn’t 20 people made me sick or dead by now with the people I have been around with in 4 weeks even at 6 feet away ? We can’t be 5 feet from each other in a WALMART or anywhere, & some stores we can’t even walk in. But eat the foods & drink those drinks & the brain will be just fine. Uh hu,, Right. Tell that to a baby at 18 months old who has something wrong with his or her brain & will never be normal 60 years later or longer than that.

    Liked by 2 people

    Comment by James D — May 3, 2020 @ 2:43 PM

    • James, it’s not necessarily the world against us. Oftentimes, it’s us fighting the world.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 3, 2020 @ 2:54 PM

    • You know James not everyone will understand and chose to be ignorant until somehow someway they are affected directly or indirectly. That may never happen to individual members of society in terms of epilepsy but some form of illness or injury will eventually happen to others. At that point society can then see and realize how difficult it is to live life’s challenges. At least in this “Epilepsy Talk” family it can help us so we all know and realize we’re not alone after all. Then support and teach and help one another to the best of our abilities to be the best we are capable of being NOW and get stronger and knowledgeable, Caring and compassionate with EACHOTHER. In the end we’re all still humans too that feel, bleed, breath and have a heart and feelings.

      Liked by 2 people

      Comment by Kathy S.B — May 4, 2020 @ 12:59 AM

      • Very wise words!! Thank you!!

        Liked by 3 people

        Comment by Janet Ranieri — May 24, 2020 @ 7:30 PM

      • Thank you Janet I hope your doing and feeling well 😊. Take care and please be safe and well 😊🦅💕

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 8:28 PM

  3. I say I have Epilepsy when I know I am going to be somewhere that could to trigger my seizures. I explain the seizure to the person that I am with so they understand and know what to expect. It helps everyone and makes me feel safer.

    Liked by 3 people

    Comment by Cindy — May 3, 2020 @ 2:47 PM

  4. Actually Hodo, it’s society that associates people with their brains. Hence, the stigma against people who might seem “different” because of epilepsy, developmental disabilities or psychological problems. Some can hide it if they choose, others are not so lucky.And others don’t bother!

    Liked by 3 people

    Comment by skolly9 — May 3, 2020 @ 4:46 PM

    • Agreed. Not all of us are equally lucky in our societies or families. Perhaps one can choose one’s identity, rather than have it rubber-stamped on.

      Liked by 2 people

      Comment by HoDo — May 3, 2020 @ 5:47 PM

  5. “Why would you say: ‘I have epilepsy?'” really is a fascinating question. The are so many complex and painful sides to it. So let me share my overall experience with that question. I have not had a problem letting people know that I have epilepsy. The overall issue for people is knowing that I could still have a seizure. Seizure, not epilepsy, has been the scary word. It used to work its way out with a church exploring a way to bring me on in some capacity. The conversation would then move forward when I let them know that I have epilepsy. They would acknowledge that. It was then that there would be an awkward silence, followed up with an even more awkward coversation. “Why are you telling us that you have epilepsy? We didn’t think that you could still have seizures.” I was honest enough to admit both that 1) I had epilepsy and that while I had my seizures under control for now, 2) there was always a slim chance that I could still have another one. “We’ll get back to you,” they responded. I’m still waiting for that correspondence from more than just one place.

    Liked by 3 people

    Comment by George Choyce — May 3, 2020 @ 5:06 PM

    • Hi George
      For me, I have been controlled by my medication for over 9 years. As long as I have been controlled, I have never felt the need to tell an employer that I have Epilepsy even though I do and that even though I am controlled I could still have a seizure. All of that is true but they don’t need to know that. They don’t even have the right to ask that question. That’s how I look at it. If they don’t have the right to ask the question, I don’t need to tell them!

      Liked by 2 people

      Comment by Janet Ranieri — May 24, 2020 @ 3:57 PM

  6. It’s really a catch-22 George, isn’t it? Sure, you can lie about having no seizures then 6 months into your new job you have one and oops, “why didn’t you tell us, George?” Bye bye, job. Really ridiculous, and here you are being perfectly honest!! What do people want??

    Liked by 3 people

    Comment by skolly9 — May 3, 2020 @ 5:24 PM

    • In my experience, some people want not to be inconvenienced, some want not to learn anything new, some want not to be around disability (it might be catching). Businesses have liability concerns. The list is endless.

      Liked by 2 people

      Comment by HoDo — May 3, 2020 @ 5:54 PM

      • Yes, if you want to be negative, you can even make up reasons.

        Liked by 2 people

        Comment by Phylis Feiner Johnson — May 3, 2020 @ 6:31 PM

      • Some may just need to be educated. It’s like having a sister who is one day a beautiful health vibrant pretty woman. Then they fall and end up in a wheelchair and can’t really talk anymore. That changes the way me, you, we then think about people in wheelchairs or quadrapalegics in the future because we now live it with them too. It’s just a matter of learning to put the shoe on the other foot.

        Liked by 1 person

        Comment by Kathy S.B — May 4, 2020 @ 1:09 AM

    • I observed a grand mal seizure only once, and the sight totally paralyzed me. It occurred in a VW convertible with the top down, parked beside a veterinary clinic. The patient was a Great Dane. The helplessness and the horror I felt were intense and debilitating, and I was profoundly glad the dog’s people were there to summon help. This gave me some insight into what a casual passerby with no training might feel.

      Liked by 2 people

      Comment by HoDo — May 4, 2020 @ 8:22 AM

      • Yes and it is VERY HARD on the individual/animal as well. But as long as they know or even hear a calming voice and maybe hug or touch they will be good with a bit of healing and rest of the bones and muscles (lol in my case mouth!!).

        Liked by 1 person

        Comment by Kathy S.B — May 4, 2020 @ 11:02 AM

  7. Personally, I treat it as a ‘need to know’. I’m lucky with nocturnal tonic-clonics, I can hide it to a degree, but I don’t hide it because I’m ashamed, but because it really isn’t anyone’s business unless I choose to talk about it, and it does get talked about periodically because I always take opportunities to educate. Because I never assume I won’t suddenly have a TC during the day, if I’m somewhere on a regular basis I usually let one person there know my situation and what to do.

    The current circle of people I associate with have never seen me have a seizure, but many have seen how I am in the days afterwards but if I’m asked if I’m ok by someone who doesn’t know me I mostly say I’ve got concussion which the general public seem to understand a bit more, plus I’m just not up to doing the education thing at that time.

    Liked by 3 people

    Comment by Katie — May 3, 2020 @ 6:14 PM

    • Katie, I fully understand.

      I used to be sure that one person in any situation knew that I had seizures, so that if I had one, everyone wouldn’t freak out. (Like the time I slammed my head into the wooden chess board. Everyone thought I was dead.)

      And sometimes it’s not the right time, or the right place, to get into educating people.

      Other times, they just don’t want to know.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 3, 2020 @ 6:39 PM

      • Funny how fear can breed ignorance

        Liked by 1 person

        Comment by Kathy S.B — May 4, 2020 @ 1:12 AM

    • But that is a good time to teach others to not be scared either.

      Liked by 1 person

      Comment by Kathy S.B — May 4, 2020 @ 1:12 AM

  8. I believe it’s only a family and friends who make it like feel or not who help the person think and feel that way. Or like me I guess it was something I just decided “their not me!! So really it’s their problem not mine”. They either care and I don’t care if they don’t. Their not all me or they don’t have to live the pain (in more ways than one) from a seizure, but I do. However I completely agree it can be very dangerous and at times scary to come out of one (that’s kind of why I love horses and riding and animals) somehow they just love you and try to help you the best way they know how to but at least with some odd form of compassion

    Liked by 1 person

    Comment by Kathy S.B — May 4, 2020 @ 12:28 AM

  9. DON’T EVER BE ASHAMED OF WHO YOU ARE!! That’s what makes you UNIQUE 😊💕

    Liked by 1 person

    Comment by Kathy S.B — May 4, 2020 @ 1:14 AM

    • You go girl! 🙂

      Liked by 2 people

      Comment by Phylis Feiner Johnson — May 4, 2020 @ 9:37 AM

      • It’s not easy to understand what you can not see. Even in the case of tonic clonics! Why is that happening? She seems perfectly OK so why is that happening?

        I pick and choose who will know about my issues. It isn’t very obvious and my meds have not had an obvious effect on me which amazes my Drs. I know I am very lucky that way.

        Liked by 2 people

        Comment by Janet Ranieri — May 24, 2020 @ 3:31 PM

  10. I once purposely asked a loved one to film me having a partial (not TC) seizure some time, when safe. Well, it was really scary and weird watching it happen, and I must say, it really gave me a better understanding what it’s like for those on the “other side”, so to speak. Hey all, you all should do it because it may provide you with more empathy for those who care for you and/or are your friends, family. No, not that we should be ignored, but why people “freak out”. Oh, and a TC, from what I hear is even scarier!!

    Liked by 3 people

    Comment by skolly9 — May 4, 2020 @ 8:37 PM

  11. I had a TC on a blind date once. Wow! What a mess. The poor guy freaked out and thought I was about to die. (I don’t blame him. As you said, it’s not a pretty sight!)

    Usually, I would tell one person in each situation that I had epilepsy. But, I wasn’t so forthcoming when it came to dating.

    Except for my first date with Arthur when I had a lovely TC. Then, it was full disclosure from the start. Wonderful person that he is, it didn’t faze him at all.

    And we all know how that turned out, 40 years later!

    Liked by 2 people

    Comment by Phylis Feiner Johnson — May 4, 2020 @ 8:53 PM

  12. Initially knowing nothing about Epilepsy, I refused to believe I was having seizures & kept asking the hospital doctors “what the hell I’m doing here”, when ever I woke up in hospital emergency room bed.
    And the Doctors kept telling me “Sir, you just had a seizure” to only asking them “what in the hell is a seizure”?
    After 5yrs of refusal & denial to accept the unbearable circumstance, facing with employment ultimatum forced me to seek Doctors clearance & MRI test.
    Watching myself having two grand mal seizures on the hospital video became the shock of my life, finally forcing me to accept the bitter truth I tried to avoid for few years.
    Therefore, while the ancient history of epilepsy may still scare many members of society, I can understand why too many people in society would be shocked to see someone having seizures without obvious visible signs to alert the eyewitnesses.
    Therefore, I believe in alerting the people around me when ever the auras of my Epilepsy feel like going to knock me out with another seizure again, saving the eyewitnesses from unexpected total shock.
    In general, providing education in FIRST AID to victims of heart attack, stroke, seizures,,, starting in high schools could been helpful to resolve the mistry behind Epilepsy in society.
    Gerrie

    Liked by 3 people

    Comment by BahreNegash Eritrea — May 6, 2020 @ 6:05 AM

    • The General First Aid class I once took at the Red Cross didn’t include seizure information. Though that may have changed. I should think if you have no clue as to what to do, and so feel helpless, you would be reluctant to step in, in any capacity.

      Liked by 2 people

      Comment by HoDo — May 6, 2020 @ 7:36 AM

      • Exactly my point,,, Knowledge is power therefore Education is the key to better understanding & engage society to learn & accept medical hardships, including Epilepsy, eradicating the stigma & misconceptions over having seizures just like helping victims of heart attack or stroke.
        Therefore, adding Epilepsy to the FIRST AID trainings provided in all schools would certainly eliminate the social hardships many victims of epilepsy are forced to live through.
        Gerrie

        Liked by 3 people

        Comment by BahreNegash Eritrea — May 6, 2020 @ 8:47 AM

      • FYI: They do have first aid specially geared towards “epilepsy” now 🙏🏼🦅😇💕😃. But I still feel it never hurts anyone to actually PROPERLY TEACH AND LEARN OTHERS, but to ALWAYS BE OPEN TO LEARNING AS WELL!! 😊💗

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 8:40 PM

  13. I know our local Epilepsy Education Director goes around to schools and police, fire fighters, ERs and First Responders, independently teaching seizure awareness and First Aid.

    Perhaps if you talked to you local Epilepsy Foundation they could help.

    Epilepsy and Education…Coming Out Of The Shadows

    https://epilepsytalk.com/2018/12/06/epilepsy-and-educationcoming-out-of-the-shadows/

    Liked by 1 person

    Comment by Phylis Feiner Johnson — May 6, 2020 @ 10:46 AM

    • I love the idea of volunteering to educate groups, but our local epilepsy foundation doesn’t seem to be set up for that. Thanks for the suggestion. When the lockdown is over, I’ll start with my office mates. And there have always been doctors, who may or may not have listened.

      Possibly there’s a nearby Toastmasters group, gain some public speaking skills along with disseminating info.

      Liked by 2 people

      Comment by HoDo — May 6, 2020 @ 1:31 PM

      • One would think it to be a common sense approach to helping people and especially children learn how to help others having a seizure but NOPE! I am here to tell you that limited programs exist. The funding just isn’t there. It took a very long time to get Autism Awareness programs started in elementary schools and they are a huge success. But Epilepsy? That has a long way to go unfortunately. It makes me sad.I had a very hard time convincing a few psychologists that some of the kids I was working with were having seizures. But because THEY did not see them or the nurse did not see them it wasn’t possible. All righty then…
        I only worked with these kids all day long everyday for hours at a time and how long did they spend with them???

        Liked by 2 people

        Comment by Janet Ranieri — May 24, 2020 @ 3:42 PM

      • I think a GOOD REASON WHY IS BECAUSE OF INSURANCE AND LIABILITY aside from FEAR AND POSSIBLY SHAME!!

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 8:45 PM

    • THIS IS THE BEST!!!!!!! If I am EVER ASKED I WILL RESPOND TO THE BEST OF MY ABILITY TO HELP OTHERS LEARN!! Especially about epilepsy 🙏🏼🦅😇💗😘. Sometimes even as “Epileptics” having our own spouses and children speak up or teach others also helps others to not be so fearful as well 😊🙏🏼🦅😇💗

      Liked by 1 person

      Comment by Kathy S.B — May 24, 2020 @ 8:43 PM

  14. Great idea. Also, there are often association fairs and business affairs that you might participate in.

    Liked by 3 people

    Comment by Phylis Feiner Johnson — May 6, 2020 @ 1:55 PM

  15. Cynical Skolly here: I’ve dealt with the EFA for many years thru support groups, conferences, walks, etc, and they are very conservative in their approach. In my opinion, it’s best to talk with people close to you, friends, collegues, etc, if you want to open people’s minds, Phylis, I have some great ideas for future blogs: epilepsy and sexism, epilepsy and racism, classism, religion. I learned so much in EFA meetings re: what people from different religions and ethnicities must deal with, that I forgot we live in this century. Being seen as a witch, denied access to a child during divorce, etc, etc. wow Don’t get me started on Neurologists and women.

    Liked by 2 people

    Comment by skolly9 — May 6, 2020 @ 10:55 PM

    • I do have some articles of which you speak, skolly.

      And it is a shame when your own Epilepsy Foundation can’t step up to the plate.

      I too, have learned so much from the support group that I started. I’s where we share fears and facts, care and concerns and every day dilemmas.

      It’s always wonderful to get the support and feed-back from those who are in the same boat as you.

      And yes, we can educate those who are our friends and dear ones, people in our groups and even the stranger or two.

      My friend Charlie used to wear his hair very short, where his brain surgery scar (which looked like a lightening bolt) would show.

      When I asked him why he didn’t grow his hair longer, he said he was proud of his scar. And when anyone asked about it (and many did), it was an opportunity to explain about epilepsy.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 7, 2020 @ 9:35 AM

      • I agree!!

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 8:47 PM

      • Ironically I actually have a cut on the Center left side of my scalp that had 27 stitches in it from a seizure I once had in my washroom and dropped and hit my head on the handle and cut my head open. I don’t remember much but I sure am not ashamed of it either. P.S. THANK GOD/MY GRANDMA I COACHED MY HAIRDRESSERS SON IN HOCKEY FOR YEARS AND WENT TO SCHOOL WITH HER TOO!!!!!!! 😘😘😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 10:26 PM

    • Skill you, could you elaborate a bit by what you mean writing that the organization was “conservative in its approach”? “Conservative” has so many meanings. Maybe an example or two? Thanks.

      Liked by 2 people

      Comment by HoDo — May 7, 2020 @ 1:01 PM

  16. I meant “Skolly,” this keyboard can be a problem.

    Liked by 2 people

    Comment by HoDo — May 7, 2020 @ 1:03 PM

  17. Hodo, I don’t mean to demean the work of the EFA, nor do I know anything about their political or religious ideologies. I just feel that their focus, understandably, is on a cure, to stop epilepsy. They are underfunded and ill-equipped to deal with the daily intricacies of the person with seizures; the drug side-effects, psychological impact, stigma, job loss, etc, etc, so they do what they can. I would often bring up my med side-effects in meetings, only to be met with a feeling of denial, ignorance, etc. Then it got into my stupid noggin that the EFA gets valuable funding from Big Pharma, so I guess I need to shut up, huh.

    Liked by 1 person

    Comment by skolly9 — May 7, 2020 @ 8:57 PM

    • Actually the EFA is having a monumental struggle to make ends meet. So, I wouldn’t be too sure about that.

      Like

      Comment by Phylis Feiner Johnson — May 7, 2020 @ 9:52 PM

      • If I may can I please ask why does everything have to be about money and not about having compassion, caring, understanding and trying to help the best way we all can? Seems to me if all of the world governments and insurance companies and medication companies all ended up having a person in their family (or themselves) become epileptic, quadriplegic, diabetic, heart problems and on and on then they really don’t seem to have the empathy and caring to try and assist those with the “SET BACKS” to be able to help themselves in any sincere way. I was a zillionaire I WOULD HELP THOSE OF US WHO NEED THE HELP!! 😊🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 9:00 PM

      • RATS!!!!! Everything always comes down to “Ends Meet”!!

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 9:02 PM

    • Ah, thanks, I recognize the stance: take this pill and be cured, and don’t come back complaining. I prefer informed discussion about coping, myself, but it’s not that easy to find, present venue excepted.

      My newly diagnosed friend said they sent him home with medication and nothing else.

      Liked by 2 people

      Comment by HoDo — May 8, 2020 @ 8:48 AM

  18. We are the product of our environment therefore expected to function accordingly, immune from dysfunctional social disorders & uncommon abnormalities.
    Therefore in my case, coming out from what was “invincible society immune from abnormalities”, epilepsy was a very long hard ordeal to learn & accept to live with.
    Once I got over the difficult process of accepting epilepsy, I’m more interested in what I think about myself more than what the rest of the world thinks of me.
    Therefore, I’ve no problem openly admitting & explaining the epilepsy I tried to deny, cover up & hide from my employer, family, friends & general public while I’m having seizures in public & carried out to hospitals for the whole world to see.
    In the end, I found peace of my mind by accepting epilepsy more than I can find in trying to convince everyone else what makes for epilepsy.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — May 24, 2020 @ 4:52 PM

    • For me, acceptance was hard to come by. Hence as you know, epilepsy was my “dirty little secret”.

      It wasn’t until I matured and became more comfortable in my skin that I came to deal with it — sort of.

      I would tell one person in every anticipated setting my “secret”, so that no one freaked out.

      Then my seizures became controlled and ironically, that’s when I began to speak out.

      I guess it was the trite saying “I have epilepsy, epilepsy doesn’t have me.” But that’s how it worked.

      Then was when I wanted the world to know about epilepsy. Not just my close friends. (Family still treated me like I was a pariah.)

      Who would have known that I would could come to this point? I would have never guessed in a thousand years!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 24, 2020 @ 5:28 PM

      • Exactly my point Phylis, If I can learn to accept & live with the epilepsy I hated the most, I can live with the price of social ignorance, rejection, negligence & select the people I need to share my life with.
        Therefore, I learned the hard way to accept my epilepsy.
        The rest is coping with the aftermath of the storm, rebuilding your life brick by brick against all odds.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — May 24, 2020 @ 7:31 PM

      • Gerrie now with this “COVID-19” going around it appears to me that the world is simply afraid to even be around ANYONE WHO COUGHS OR SNIFFLES OR SNEEZES!!!!!!! And if they have one NOW THEY KNOW HOW WE FEEL SIMPLY HAVING EPILEPSY!!!!!!! MAYBE NO IS THE TIME TO TEACH THIS WORLD HOW TO HAVE SOME SINCERE COMPASSION AND CARING!! As epileptics we already have lived that all of our lives and it’s really nothing new to us. But IT IS NEW TO IGNORANCE!!!!!!! 🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 10:44 PM

      • Another epileptic would have known Phylis and been VERY PROUD TO CALL YOU THEIR FAMILY AND OR FRIEND!! 😊🙏🏼🦅😇😘

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 9:05 PM

    • Goodevening Gerrie 😊. If anything I just could not help myself when I observed everyone in my family, extended family, friends and loved one running around almost panicking!! I actually had to kind of shake my head and laugh!!!! As they were (still are) Trying to properly get ready to “HUNKER DOWN”!!!!! Finally my husband, best friends, aunties, children and husband asked me “Kathy how could you be SO CALM RIGHT NOW??!!!!!!!”. My response was “welcome to my world!!!!! That’s how SOME people ARE with me because of my epilepsy or if I have a seizure!! And my job is to ALWAYS BE HOME WAITING FOR EVERYONE TO COME HOME!!!!!!! So my problem isn’t HAVING TO STAY HOME!! ITS BEING STUCK WATCHING ALL YOU PANICKING AND KNOWING YOUR ALL ONLY GOING TO GET WORSE BOTHERS ME!!!!!!! Lol 😂 in other words it’s my job to be home ALONE from 8AM TO 4PM!!!!! And you are ALL INVADING MY SPACE NOW!!!!!!!” Lol 😂 😂😂😂😂

      Liked by 1 person

      Comment by Kathy S.B — May 24, 2020 @ 10:40 PM

      • Yes Kathy, I understand what you’re going through, trying hard to calm down your family when they should be calm enough to know that every episode is just another incident you had been living with for decades & had overcome many times over & over again, just like seasonal flue.
        I totally agree with you that watching my family in total panic & hysteria concerns me more than the seizures I’ve learned to live with.
        Furthermore, I resent the idea that the hospital calling my family everytime I got a seizure to only wake up watching my whole family surrounding my bed with totally unwanted & unnecessary concern I did NOT ask for.
        I don’t like being burden to my family. Therefore I tried to make it clear to my family that Epilepsy is my cross & I’m capable of carrying my cross without the family panic & hysteria, which raises my concern to my family’s wellbeing.
        Therefore I don’t need the extra concern.
        Unfortunately, the deep misunderstanding, paralyzing fear & ancient misconceptions over Epilepsy does NOT make it easy for our families & our society to cope with the neurological disorder that has been terrorizing human race since eternity.
        Let’s hope the mass media providing limitless global information all over the world will come to be instrumental mechanism in educating human race to better understanding of Epilepsy, just like the global combat against COVID19.
        Stay safe, stay strong & stay optimistic that tomorrow is a better day for all us to make difference in our lives.
        Best wishes!
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — May 25, 2020 @ 3:54 PM

      • Goodafternoon Gerrie 😊. Thank you so much for the comforting understanding and words 😊💕. I think some though only we (as epileptics) completely understand one another in way that is unexplainable to others (even though we wish or think we have been able to get through to them). Thank you just for being who you are!! I agree about epilepsy being our crosses to carry because nobody else TRULY UNDERSTANDS except another epileptic 🙏🏼🦅😇❤️. Thank you for your kind words and sincerity. Please be well and stay safe, but most of all please have a very good safe blessed day today and please take care of yourself 😊🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — May 25, 2020 @ 6:10 PM

  19. Like you, Gerrie, I hope there are some positive side-effects of the global epidemic as opposed to what could happen to those who “had” it and those who “didn’t” have it. As we with epilepsy know, stigma is very traumatizing.

    Liked by 1 person

    Comment by skolly9 — May 25, 2020 @ 5:22 PM

    • Skolly,
      We had come a long way from the ancient days of Epilepsy victims condemned to be “witches, possessed by demons” & harshly prosecuted by the same society which knew nothing about the neurological disorder.
      Therefore, while society may never fully learn to understand & accept the deep impact of the neurological disorder, thanks to centuries of advanced medical education, research, development of scientific studies & hospitalization, human race has learned to live with epilepsy.
      Therefore, the dark days of traumatizing witch hunting for victims of epilepsy are over.
      The rest is about making your life count, charting your own destiny standing up against any hindrance on your way.
      Best Wishes!
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — May 26, 2020 @ 3:22 PM

      • “There is an ongoing, significant embarrassment level about it,” said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University.

        “The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer, or an H.I.V. even.

        At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

        “It’s better today,” he said about public perceptions of the disorder. “But even among well-educated people, people don’t like to talk about epilepsy.”

        Patricia Gibson, MSSW, ACSW, Associate Professor, Wake Forest University School of Medicine, Winston-Salem, North Carolina, who has been the Director of the Epilepsy Information Service since 1979, looks at it like this:

        “Stigma basically just reflects ignorance of the disorder. Stigma continues to be alive and well, I am sorry to report, and it is my opinion that as long as we have human beings, there will probably be stigma.

        “I have to say that from my observations, stigma is much reduced in comparison to when I first started working in the field of epilepsy in 1976. I seldom hear stories that can begin to compare with those of years ago.

        “However, recently I got a call from an upset mother whose son was not allowed to go to the school prom because ‘he might have a seizure there,’ and from the distraught mother of a 4-year-old who had been expelled from her church-sponsored daycare because ‘we are not equipped to handle epilepsy,’ even though the girl had yet to have a seizure in class!

        “These are the kinds of situations we try and correct by providing information and training programs with educational materials.

        “My program doesn’t just teach about seizures, or first-aid, but also the importance of emotionally supporting and caring for others.”

        The alarming nature of epilepsy and its symptoms urgently calls for attention.

        As Pulitzer prize-winning author Jon Meacham states, “Most people with epilepsy are not in a constant state of seizure — they are, rather, in perpetual but quiet danger.”

        The battle will truly be won not only when societies all over the world acknowledge and understand the challenges posed by epilepsy, it’s when those with epilepsy no longer need to bear the social stigma of their condition.

        Like

        Comment by Phylis Feiner Johnson — May 26, 2020 @ 3:58 PM

      • Leprosy, cancer, autism, dementia, bipolar disorder,,, & many more medical difficulties use to terrorize society & stigmatize the medical disorders & disabilities, for luck of better understanding & treatment to cure the medical disorders & disabilities.
        And as long as society remains ignorant to learn & understand the basic information & treatment for these medical disorders & disabilities, society will remain blinded by fear & therefore prone to stigmatize the the medical difficulties that society does NOT know much about.
        Therefore, education is the key for society to resolve the deep misunderstanding, fear & eventual stigmatization of the medical disorders.
        From my personal experience, knowing nothing about epilepsy I refused to accept that I was being knocked out by seizures, until I saw myself recorded on hospital video having two grand mal seizures in a week.
        Even after the diagnosis & confirmation of my epilepsy, I had hard time accepting the neurological disorder I don’t deeply understand & know much about.
        After all, society did NOT prepare me to face medical adversities, because of the stigmatization of Epilepsy
        Eventually, learning to accept & live with my seizures made it possible for me to know more about epilepsy.
        Therefore, education is the key to eliminate the stigma over epilepsy.
        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — May 26, 2020 @ 7:30 PM

  20. Yes, Phylis, Gerrie, the stigma of epilepsy has definitely decreased over the decades. And yet, not long ago at a EFA conference I spoke with a person who was consistently denied the ability to adopt an infant because of her epilepsy. She just looked at me, a stranger, and started crying.

    Liked by 1 person

    Comment by skolly9 — May 26, 2020 @ 6:33 PM

    • Skolly,
      I’m very sorry to read about the discrimination of your friend.
      Unfortunately, I understand & agree with you that society does NOT always treat ANY kind of disability with EQUAL & FAIRE justice.
      And that’s why we need & must fight for our rights, unjustly deprived & discriminated by society.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — May 26, 2020 @ 7:42 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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