Things About Epilepsy Nobody Tells You

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I have epilepsy

I have epilepsy, also known as seizure disorder. There is no cure so it's with me until the day I die. Living with epilepsy is different but possible. For those who have been recently diagnosed, here are a few things to expect (that nobody will tell you).

My seizures started after a head injury in the Army. I did everything I could to stay and the Army did everything they could to keep me but treatment didn't control my seizures enough to meet their requirements. I'd be fine as a civilian but not as a soldier. I was medically discharged a couple years after my diagnosis.

For the most part, people are understanding and supportive when I tell them I have epilepsy. If there is any kind of stigma, I haven't noticed it. Working with my neurologist, I was able to find a combination of (three) medications to help me live a somewhat normal life. At the same time a few things pop now and then. Things that nobody told me. Here are a few.

Before we begin here are a few things to remember: I have never told more than one person at a time that I have epilepsy. Also, what you are about to read is more than I have ever told anyone about living with my condition and how I feel about it. It's not easy for me so I need some mercy. Thank you.

Photo by Cecil Corwin (Madigan Army Medical Center in Fort Lewis, Washington)

Countdown to Epilepsy Awareness Day

Epilepsy Awareness Day: March 26, 2015

Everyone's a babysitter

And it will drive you nuts

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Now this one is tricky because seizures come in all shapes, sizes and frequencies. Some people with seizure disorder will need more attention than others. However, I can leave it to everyone I know to be extra delicate with me.

I have, on average, about two to as many as five seizures a week with my current medication. These are complex-partial seizures. This means that I see them coming. I have about ten seconds to stop what I'm doing and sit down. Sometimes I can tell whoever I'm with that it's coming on. This is usually by loud grunt or just touching them on the arm.

If I miss a dose of medication then I can expect tonic-clonic seizures. I still get the same warning of a complex-partial seizure so I have some time to tell others. Don't worry, I don't drive or use firearms. In fact, it's these restrictions that prevented me staying in the Army.

It is always touching to have people looking out for me but sometimes it can get ridiculous. When I'm in deep thought or even quiet for a few minutes, my girlfriend will turn to me and ask, "Seizure?" I say no but she doesn't believe me so she keeps looking at me. So whether a seizure is coming on or not she is now on high alert.

She is amazing and I love her dearly but epilepsy has turned me into a delicate flower.

Everyone's a hero

And it will drive you nuts

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When the people around me notice I'm having a seizure, some of them freeze up. They've never seen someone having a seizure before and don't know what to do. Whoever I'm with, if they know about my condition, will probably back up and give me space. If there's any furniture or something that could cause injury nearby, they might clear that away.

Then there are the "heroes." These are the folks who have to "save the day." It's as if a seizure is a bank robbery in progress. The victim is in danger and must be saved! Unfortunately, these people have no idea what to do but do something anyway.

This will include something utterly inane but harmless such as shouting at me, asking if I'm OK or shouting at everyone... for some reason. Other times, it will be--in any other situation--criminal behavior. This will include grabbing my body or face, or trying to feed me my wallet. Still other times, one wonders if its heroics at all. This might be something like trying to slap my face or pouring a drink on me.

A cynic might think that these people want a piece of the action. Everyone wants to be part of the circus. It's all eyes on me, right? Whatever.

I'm not an expert. I'm not a doctor. I'm just a guy with epilepsy and I'm telling you this: if you see someone having a seizure don't do anything. If the person is sitting/standing close to you, back up and give him space. He's had hundreds of seizures before and will have hundreds more to look forward to. Seizures don't last forever so let him ride it out.

If I'm wrong tell the readers what to do in the comments section below. Also, stay away from me forever. For everyone else who has to be a hero join the Army or something. Or take a look at the book below.

Everyone's an expert

And it will drive you nuts

While in the Army I was a medic so as soon as I was diagnosed with epilepsy, everyone in my department had something to say. This was fine with me. They were all healthcare providers (mostly doctors) and I wanted to know as much about epilepsy as possible. They all asked me questions, too. This was about my symptoms and experiences with seizures as well as any family history of epilepsy (none). This was fine with me. They all outranked me and I was a good boy.

Today, I am no longer in the service. The friendly conversations of caring coworkers is replaced by noise. This noise doesn’t stop, it just gets really annoying and really stupid. As soon as I tell someone I have epilepsy, usually I have to explain what it means. Not a problem. After all less than one percent of people have it. But for those who do know what epilepsy is, I can expect something like…

They know the cure. It might be one of the old school medications that they think I was never prescribed in the beginning. Or it might be some new blockbuster, as if neither I nor my neurologist has ever heard of it.

Better yet, I have to go for alternative medicine. It’s all a conspiracy. My neurologist has to prescribe me pills to keep the drug companies happy. Nobody gets paid if I get cured. What I really need are herbs or crystals or something. That will do the trick. Oh, have I heard of “chelation therapy?”

But the one I love the most is that it’s all a “mental” thing. I love this one not only because of its face-palm stupidity but also because my father is certain of it. It’s all about “willpower.” Epilepsy is in the brain and so is… the… brain! I can win if I really really want to but if I’m weak then I’ll lose. Yes, of course!

Everyone's an optimist

Even me

“Hey, Champ! It’s not the end of the world. You can do (almost) anything.”

Actually, everybody probably tells you this and now I’m telling you. But in the beginning you hear it so often from so many people that it feels condescending. It’s barely tolerable from your neurologist but now all these other people have to tell me. Then you become numb to it and you forget it.

Sure they mean well but do any of them know what it’s like to have a tonic-clonic (or grand-mal) seizure? Do they know the fear that creeps inside, wondering when the next one will strike? Maybe if they also have epilepsy but not likely.

Then as time goes on, you realize that they’re right. It’s true. Life is different but fact remains: life is what we make of it. I decided to travel. I packed my bags and camera and decided to see the world.

Below is a video of super-athlete Jenny LeBaw. She was diagnosed with epilepsy as a child. I watch it now and then to remind myself that epilepsy is not the end of the world.

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For more information about epilepsy...

Click here!

Wikipedia article about epilepsy
Wikipedia is always a good place to start
Epilepsy Foundation
This is a great site from a great organization
Purple Day
March 26 is Purple Day or Epilepsy Awareness Day

Do you know anyone with epilepsy?

Do you know anyone with epilepsy?

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What do you think?

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I hesitated with writing this but now I'm glad I did. Thank you for all your kind words.
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  • PaulaLeDuigou Jan 13, 2014 @ 11:39 am
    My Father began having seizures when he was 35, and I was 10. My Mom had me go through first aid classes right away so I would know how to handle it if I were alone with him. He has grand mal seizures, which can be kinda scary to a little kid, but I learned to deal with it, as did my two brothers. He's now 74 and we can tell just by talking to him if he's going to have one. Thank you for being so open and sharing your experience. Its an important topic to share.
  • Steve_Kaye Jan 10, 2014 @ 10:27 pm
    Congratulations for having the courage to publish this candid lens. I'm sure it will help many.
  • amswan Jan 10, 2014 @ 8:59 pm
    This is a great lens. I have also had a brain injury, thank you so much for sharing. It is so nice to see another person write about their experiences and speak about them in a very matter-of-fact way.
  • BaddewFibes Jan 06, 2014 @ 7:16 pm
    Great, informative lens. Thank you!
  • AnuradhaM Jan 06, 2014 @ 3:32 am
    Kudos to your courage and high spirit...
  • DownToEarthLiving Jan 05, 2014 @ 1:39 pm
    Wonderful insight. My son had seizures as a child, and I can relate to all you said about people's reactions. Enjoy your life and be travels.
  • ItayasDesigns Jan 05, 2014 @ 12:49 pm
    My baby sister was borderline epileptic when she was a baby and she had her first seizure in my arms. Somehow they stopped as she got older. Thank you for sharing this article and tips with us all. I appreciate you sharing your thoughts and feelings.
  • nicenet Jan 03, 2014 @ 7:09 pm
    I heard a testimony of a woman who had an epileptic child. Where I come from, people believe that when you stay around people that have seizures you'll get it. This woman is a good woman but whenever she stays in a rented apartment, she was asked to leave when they discover her son was epileptic. One day, she went shopping in the market and suddenly, her son had a seizure. People ran but she grabbed her son, looked up to heaven and said,''LORD HELP ME!'' Miraclously, her son was healed of epilepsy and he never any seizure again.

    I wish you good health.
  • normyo-yonormyo Jan 03, 2014 @ 10:48 am
    Thanks for this informative lens. So in a way all I can do is make sure you do not hurt yourself on anything in your surroundings and that is all I need to do. Good to know. So probably epilepsy in real life has nothing in common with how it is depicted in movies and on television, which is probably the reason why some people try to be heroes.
    Hope they will keep searching for a cure that protects you from those last "few" seizures a week.
  • libertyduckling Jan 03, 2014 @ 12:31 am
    good read :)
  • skiesgreen Jan 02, 2014 @ 11:12 pm
    It is a frightening thing to watch someone having one of these fits, Thanks for sharing and you did a great job getting LOTD. Well done.
  • nDee Jan 01, 2014 @ 7:03 pm
    Although it took a lot of courage for you to share ... I'm thankful you did. It gives me a better perspective as I'm sure many others who read this. A great lens ... thanks so much.
  • seenamary Jan 01, 2014 @ 4:01 pm
    I'm really glad I came across this lens. Thanks for sharing the insider view on epilepsy.
  • Mommie-Moola Dec 31, 2013 @ 3:10 pm
    I'm glad you got over your initial hesitation. Delicate flower? Not. Your straightforward-no frills style speaks to your bravery (yes, bravery... even if it was born of frustration.) and will no doubt help someone else learn to live with epilepsy. You rock. Carry on ;)
  • Katyma Dec 30, 2013 @ 9:47 pm
    Thank you for sharing. I am one of those who was unaware of exactly what epilepsy was. I did, however, know that if someone was having a seizure to clear away anything that can hurt them and to keep them safe from their surroundings. It's nice to hear advice from someone who has experience first-hand. I'm glad you wrote this as well.
  • Embeegee Dec 29, 2013 @ 3:40 pm
    I had to smile about the alternative cures. I have diabetes and all sorts of natural 'cures' are thrust at me. I think you are very brave and I wish you well for the future.
  • getmoreinfo Dec 29, 2013 @ 11:53 am
    Thanks for the informative lens.
  • michael-andrews Dec 28, 2013 @ 7:26 pm
    I've had epilepsy for almost 19 years from my brain injury. Mine are complex partials and I get one a month on average
  • MarcellaCarlton Dec 28, 2013 @ 6:43 pm
    Yes. My sister had epilepsy when she was small. She had her share of the Grand Mal seizures. Thank you for sharing a subject that usually doesn't get presented.
  • RoadMonkey Dec 28, 2013 @ 4:29 pm
    A very helpful and informative article. While I have known a couple of people with epilepsy, it was only as acquaintances, not friends. I was sitting next to someone in an hotel, at dinner one night. It was part of a conference and all the others knew each other, I was one of two "outsiders". the woman next to me had a seizure and her head started falling forwards. I moved her dinner plate but the others (who knew her) told me not to do that, as she would wake up shortly and need a period of peace and would be confused to see that her dinner plate had suddenly (as she would see it) have jumped away from her. First aid advice many years ago was to try and put a spoon between the person's teeth, to stop them biting their tongue but I believe this has now been rescinded - but may be the reason for people trying to stuff your wallet in your mouth? Loved that description!
  • RockinPicks Dec 30, 2013 @ 3:47 am
    You did the right thing. Are they kidding. If the woman fell into her plate she will be much more upset. When my daughter gets it we put her down on the floor and protect her until it's over. Then she will want to sleep.
  • contact-everettecarpet-com Dec 28, 2013 @ 2:12 pm
    Great Info!!!!!
  • jen17 Dec 28, 2013 @ 12:18 pm
    Very helpful - thank you!
  • scarlettohairy Dec 28, 2013 @ 11:57 am
    Yes, this was helpful. I worked with a guy who had a seizure and we didn't know what to do so called 911. If he had told us ahead of time, we would have just let him ride it out then check to see if he needed help. He really didn't need the paramedics but we had no idea, so a little warning would have saved the bother. And that's what he thought our called 911 was. Great information. Thanks for sharing.
  • dawnraeb Dec 28, 2013 @ 9:35 am
    First of all, thank you for your service. I appreciate that. Second, thank you for sharing about your epilepsy. It is good information. I had a co-worker who tried to hide her epilepsy. She tried to hide it mostly because of people's reactions (that you described). I think that the more the rest of us know, the more truly helpful we can be. She shared alot of information with me, since my migraines and her seizures often flared up at the same times. But, if it weren't for people like you and her sharing, i'd know nothing about epilepsy. Thank you for helping to educate me.
  • aishu-pandey Dec 28, 2013 @ 7:09 am
    Hi there. Thank you for such a rich and insightful information on and recount of living with epilepsy. My brother has epilepsy and I used to be scared a lot whenever he would have seizures. We would surround him and then force a metal spoon in between his teeth, which, as we later found out, only worsened the case and sometimes made my brother lose his teeth. Thanks to his neurologist, we are now aware of the dos and don'ts. Thanks to you too for bringing up such an important issue. Kudos to the writer.
  • JackalynAnn Dec 28, 2013 @ 3:29 am
    I used to work with children who suffered from epilepsy. This is a good article because only those who suffer a condition can really describe how to help cope with it.
  • angelatvs Dec 27, 2013 @ 11:49 pm
    Wow thanks for sharing
  • discountcopiercenter Dec 27, 2013 @ 11:35 pm
    Thanks for creating an awareness on epilepsy. Nice advice on this subject. It is truly helpful to make someone feel better and make your life positive with this noble ideas.
  • KandH Dec 27, 2013 @ 10:16 pm
    It was, bless you for sharing - my kids have a very close friend who started having seizures a couple of years ago, she's spent nights with us and I've never experienced one although I did sit with her in hospital while she was being monitored after a bad one as both her parents had to be away for a few hours. I've no clue what I would have done before reading this but now I'm sure I'll be much better prepared if she does ever have one while she is with us. She lives a very full and active life and most times I don't remember that she's ever had them at all. It's great that you shared the video of Jenny Lebaw, I think I'll share that with her too :)
  • flora-crew Dec 27, 2013 @ 10:08 pm
    This was an interesting article, and the video was inspiring as well.
  • RockinPicks Dec 27, 2013 @ 7:52 pm
    My daughter has the same partial-complete stemming from the temporal lobe. She is on two meds, but very weak dosages. Before her surgery it was so hard. We could't control it and the meds were making her sicker than the seizures. Since the surgery life is so different. She even drives now. Everything you wrote about is spot on perfect. We tell everyone about it because if she has one we don't want them to freak out. She is very athletic too. I am guilty of the "are you ok" if she is just sitting there thinking. I always feel like I am on guard with her. There was a time I wouldn't leave her alone. I worry more than she does. Her seizures are full blown and we call them the little ones. Those she just looses her ability to speak for around 30 seconds and looks like she is in space. If I can get valium into her she won't go into a full one. She too can tell for around 10 seconds and it's stop drop and roll time. Get away from the stairs. She can never lock the door taking a bath and never swim alone ever, but she lives with that. I drive her crazy when she takes a bath. I practically sit outside the door. She has a certain sound she makes during the seizure and I can hear it a mile away while I am sleeping. Thank you for this lens!!!!
  • RockinPicks Dec 27, 2013 @ 7:39 pm
    I am so happy to see this as LOTD. My daughter has it. She had the surgery last summer to help it and it worked. She has had only one seizure and she was getting sick when it happened. Fever will increase metabolism and you have to watch your medication level. Hers was so low it was like not having any medication in her system at all. It triggered just one. She usually gets more than one when she gets them.
  • Dec 27, 2013 @ 6:56 pm
    Both of my sons have epilepsy, so we get it at our house.
  • rauspitz Dec 27, 2013 @ 6:02 pm
    Very good lens. A lot of very important information on epilepsy. Congratulations on getting LotD!
  • BestMassageChairs Dec 27, 2013 @ 4:20 pm
    Thank you for posting such a heart felt lens :)

    I have worked with people who have Epilepsy ..... it is a condition that is rarely understood ......

    Complex Partial Seizures are very common in Epilepsy, they can start within certain parts of the brain, and as you mention if they become Secondary Generalized, all that means is if you can imagine the brain is split right and left to simplify if you can imagine a spill of water starts and then spreads over from one side to the other ....... this more often results in a Tonic-Clonic Seizure ...... which most people normally visualize when they think Epilepsy.

    Tonic-Clonic orginates from Latin -

    Tonic -- Muscles will Stiffen, Breathing will stop temporarily, person may fall to ground .....

    Clonic -- Muscles will go into a convulsive/jerking movement, breathing will return -- may sound abnormal initially .....

    There may be an aura/warning feeling for person about to go into seizure, and it is important to remember that during a tonic clonic seizure that consciousness is lost temporarily, so there is no need to shout or talk as if they are a two year old.

    Advice I would give if you are supporting someone during a seizure --

    Remain Calm --- Support persons head (Rolled up Coat or whatever), loosen any tight neckwear, remove glasses etc, give space, protect persons dignity, let others know what is happening, support person during recovery

    Don't put anything in the person's mouth all you will achieve is losing a couple of fingers or breaking some dentures, don't try and restrain or hold person, only move the person if they are immediate danger, don't give the person anything to eat or drink until recovery period over....

    More often than not it is a facial or head injury that will put someone in hospital not the seizure....

    There is nothing to stop people living normal active lives and if they take the Anti Convulsive Medications etc --- some people can be relatively seizure free :)

    Again thanks for a great lens, I appreciate it for bringing a normally taboo subject to the public eyes and congrats on LOTD :)
  • SororPeregrina Dec 27, 2013 @ 3:58 pm
    Fellow epileptic here, from way back in the day when seizures were called either grand mal or petit mal (absence seizures, otherwise known as "not paying attention" when you're in school and haven't yet been diagnosed). I get them both, unfortunately WITHOUT any warning, and I'm on a buttload of medication. Fortunately, I'm extremely well controlled, but now and again... those breakthrough seizures are a real pain. I do know what you mean about that creepy feeling that it'll happen again.

    I had to laugh when I read the nurses/heroes/experts part... "and it will drive you nuts." It certainly will! I keep trying to tell the would-be heroes that the best thing they can do is just move away anything I can hurt myself on -- like a chair or other hard object, and then stand back and let me ride the seizure out. And although no one's yet tried to feed me my wallet, they HAVE tried to use towels, rolled-up paper, and once, a wooden spoon handle (because, I was told later, "I saw it in the movies"). For pete's sake, people...!

    I thoroughly enjoyed your lens. I also didn't know that there were Epilepsy Awareness bracelets to be had; I'll have to get one of those.
  • donny28 Dec 27, 2013 @ 2:56 pm
    I too have epilepsy which I developed when I was only 17. The doctors told me I was sensitive to light patterns and the seizures used to happen if my sleep was interrupted during the night... like getting up to get a glass of water and getting back into bed.

    I was told not to smoke (which I don't do) and no staying up late night partying (Yeah, like that wasn't going to happen) lol.

    Any way, I'm now 32, the epilepsy has been under control for many years thanks to medication and luckily hasn't had a major impact on my life, so I'm still able to live life to the full and do the many things others can do :)
  • d-artist Dec 27, 2013 @ 1:55 pm
    Congratulations on LOTD! A very informative and personal story... When I lived in California I knew someone who had seizures...she had a dog that detected them before they appeared.
    Thank You for sharing your story and for your service, however long it might have been, we are grateful. All I can do is keep you in my prayers...God Bless You...
  • Susan52 Dec 27, 2013 @ 1:37 pm
    Very helpful, informative and, indeed, inspiring. I don't know anyone with epilepsy (though likely I do but don't realize it) so I learned a lot from you. Congratulations on a great read and excellent Lens of the Day!
  • StephenJParkin Dec 27, 2013 @ 12:42 pm
    Great lens my friend Barbara at University had the disease and had taught us all so well that another of our friends Anne treated when she had a Gran Mal seizure and to my knowledge that was the only one she had all the time she was at University and otherwise she led a normal life (at least that was the way she had us see it!).

    Thank you for this lens as it is sure to help others finding themselves in this position. A well desreved LOTD!
  • katiecolette Dec 27, 2013 @ 12:35 pm
    Thank you for sharing advice on what to do when someone is having a seizure. I am sorry you have to live with the condition but I am glad you found a way to manage it.
  • kimmilai Dec 27, 2013 @ 12:21 pm
    So well written. Congratulations. I emphasize with the willpower comment. I have MS and I have some well intended relatives not understanding there are degrees if severity and they think I'm not trying hard enough to get better. My immediate family sees me doing what I can and are very supportive.
  • VioletteRose Dec 27, 2013 @ 12:18 pm
    Very informative lens, thanks for sharing.
  • lhbeninger Dec 27, 2013 @ 12:03 pm
    Congratulations on your LotD.
  • KentuckyGal Dec 27, 2013 @ 11:45 am
    Congratulations on LOTD! Thank you for sharing this information. In the past, I worked with several people who had seizure disorder(s), along with various other diagnoses, but none of them could really express what they were going through.
  • tfsherman Dec 27, 2013 @ 10:19 am
    I've had epilepsy since I was ten. It's very well controlled now -- no seizures at all as long as I stay on my meds. All my good wishes, I hope yours abates.
  • RecordLady Dec 27, 2013 @ 10:19 am
    I have lived with epilepsy for 42 years. I was a senior in high school when I had my first seizure. I remember feeling them come on and started to pray that I would pass out soon. Through the years I have grown to live with it.

    The more you understand what causes them it is always easier. Start a journal and write in it later when you can remember. What you were doing or eating and so on.
    You mentioned herbs...don't try any of them unless your doctor tells you to. Some can interact with your epilepsy
    I haven't had a seizure in almost 20 years, last one was at Christmas time 1995 Took along time to find the right meds, for each person is different so is the epilepsy. You will get there. Take your time and learn about you, it sounds funny but it will help.
    Good luck! God bless
  • kschimmel Dec 27, 2013 @ 10:07 am
    Thank you for sharing. As an engineer/librarian I always want to get information from people who actually have it--not second hand. Thus I want to learn about medical conditions from people who experience them and learn from them how to be helpful and what NOT to do/say. I personally share my own experience with major depression simply because I know there are so many who think they are alone and are afraid to share. Sharing info makes us all better--provided we are good listeners. Also, thank you for your service!
  • Chip_Westley Dec 27, 2013 @ 9:52 am
    Thanks. I never knew what someone could do but now I know to just let the seizure run it's course. Thanks for your informative article.
  • ComfortsOfHome Dec 27, 2013 @ 9:49 am
    This is such an important message - to let people know what epilepsy is like from the perspective of the person who lives with seizures. I had to chuckle about the "delicate flower" part, but I know it's not funny at all and can only imagine how frustrating it must be for you to be treated as an unpredictable invalid. I didn't know there was an Epilepsy Awareness Day, but it sure sounds like it's needed. Thank you for sharing your story with us.
  • Merrci Dec 27, 2013 @ 9:28 am
    What a well written lens, laying it out there. Good to know we should let a person ride it out. I wouldn't have thought that, so thanks for informing us! Congrats on LotD.
  • gottaloveit Dec 27, 2013 @ 8:52 am
    Very interesting. I applaud you for educating the public to epilepsy.
  • RenaissanceWoman2010 Dec 27, 2013 @ 8:18 am
    So I won't offer any platitudes. You don't need them. They don't help anyway. I appreciated your willingness to tell your story, your experience, your thoughts related to epilepsy. I have one good friend who suffers from frequent seizures. Her experience with epilepsy is the only thing I know. Congratulations on your feature as Lens of the Day.
  • tonyleather Dec 27, 2013 @ 8:16 am
    This was a truly remarkable ans inspirational lens, and it took great courage to be so frank and honest. Very informative and useful, too, so thanks a lot for writing this!
  • PaigSr Dec 27, 2013 @ 7:41 am
    On the poll I saw the "I know someone / I have epilepsy." For me it is I had epilepsy. A little brain surgery and it went away. But having gone through it made me more aware of others and helping them when they have seizures. Also Enjoy your Lens of the Day.
  • Dec 27, 2013 @ 5:15 am
    we had a girl who had tonic clonic seizures in high school, she had an attack during her exams as well, it wasn't pretty. Stupid questions, I remember watching My Sister's Keeper and the lawyer had a guide dog, is that real in real life or just a made up job for a dog?
  • RubyHRose Dec 27, 2013 @ 12:55 am
    Thank you for letting us know what we can do to help. To know that not doing anything is sometimes what is needed, wow. Many of us don't know the truth. Now we do. We have no reference, until now. You lowered the bar of fear for me. I can help by sharing this page, I so love new awareness of things. I am glad you took the risk to share with us.
  • rattie Dec 27, 2013 @ 12:21 am
    I taught with a lady who had epilepsy and as you say, the 'experts' drove her nuts. The children learned to look out for her episodes. They were terrific and knew not to panic.
  • sierradawn Dec 22, 2013 @ 10:04 pm
    I found your lens so inspiring! You are so positive and courageous!
  • sousababy Dec 20, 2013 @ 10:15 am
    My brother has epilepsy and had a seizure whilst staying with me. It was frightening to see him in this state one morning - he had such a glazed look in his eyes (and he didn't seem to recognize me). When I could, I managed to get him to the hospital (which was just 2 blocks away). This was after he was incontinent (and he's about 60 lbs. heavier than I am). I know he can relate to what you've written.
  • oldnavyguy12 Dec 17, 2013 @ 11:32 am
    Excellent advice on a subject many consider Taboo. Having grown up with a sibling with epilepsy, I have a very astute understanding of it's effects. Thank you for sharing.
  • Papier Dec 16, 2013 @ 11:48 pm
    Beautiful presentation of a little known phenomenon. I only know something about it because of my adult son's TBI 25 years ago. I wonder if it feels better to be sharing this - at least you provide helpful, concise pointers to others to butt out, as it seems necessary. We really are an ignorant bunch of folks who just want to help, and in this case, often just muddy the water. Thanks.
  • lhbeninger Dec 16, 2013 @ 12:41 pm
    Thank you for this. I think it's really important to debunk the myths and demystify this condition - and you've helped. Both my mother-in-law and a good friend of mine had epilepsy and they, like you, are determined not to have it rule their lives.

    I once witnessed a homeless man fall while having a seizure - in that case (because he had hit his head), I rushed to the nearest store and had them call the paramedics, then went back to his side to flag down the emergency vehicle when it arrived. Since passersby assumed I was in charge (lucky me), they kept encouraging me to put my fingers in his mouth or some such stupid thing to stop him swallowing his tongue (equivalent to feeding him his wallet, if he'd had one, I suppose). That is probably THE most commonly held myth about epilepsy, I'll bet.
  • favored1 Dec 16, 2013 @ 12:24 pm
    It is difficult to watch someone going through this, but I am glad you gave some advice on what
    not to do. Thank you for sharing such a private part of your life with others. May it bring awareness to us all.

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