Seizures are No Joke

Good morning my friends.   I hope you will bear with me and listen for a minute or two.  A joke about seizures caught my eye this morning, and it touched a sensitive place inside me.  I have a seizure disorder. Please do not pity me. It is a diagnosis and sometimes a grim one; however, it sure as hell is not a death sentence. To be honest, those of us with epilepsy do have shorter life spans but while alive, I LIVE.

I do not sit around worrying when the next grand mal is going to hit.  I cram as much living as I can into my life.  I swim, just not alone in the ocean.  I run marathons–nine, soon to be ten.  I bore three beautiful children, despite the risks, and they arrived without the genetic defects that anti-seizure drugs sometimes cause; indeed, my daughter survived the two grand mal seizures I suffered while pregnant without sustaining any damage.

I drive . . . but not at night.  And I write.  It is true that I lost my vocabulary bank when one grand mal lit up my temporal lobe, but I rebuilt most of it.  And while I never regained my map section, I navigate with a laugh and a lot of circular reasoning.

When I read stuff that equates a seizure to an emotional reaction, or uses the analogy of having a seizure to tell a joke, it upsets me.  Hearing bad news does not cause seizures.  An epileptic is not a spaz; she does not wig out and then convulse on the floor when she gets over-excited or emotional.

In a normal brain, millions of specialized nerve cells, called neurons, transmit electrical impulses.  These impulses communicate with other areas of the brain and help us function. When these impulses misfire, a seizure occurs. Or as I explained to my children, sometimes an electrical storm goes off in my brain.  Lightning flashes.  Thunder rolls.  Usually, the seizures last for a few minutes.  If a seizure goes on for more than five minutes, I am in Status epilepticus (SE).  This is a life-threatening condition in which the brain is in a state of persistent seizure.  Watch the clock.  Pick up the phone.  Call 911.  And pray.  At that point, the brain is destroying itself and Mom might die.

Friends, there is nothing funny about having a seizure.  When I hear seizure jokes, it reminds me of my own mortality, which I can handle most days.  Hell, I remember it each night when I say my prayers and thank God for watching over me while I sleep.  What I cannot handle is feeling that you think I somehow can corral these neurons that zip around inside my brain.  I take my meds every day, try to get enough sleep, avoid bright flashing lights and alcohol, but beyond that, I cannot reduce the chance that another seizure will strike.  It is not within my volition.

Don’t feel sorry for me.  But please don’t make fun of me either.   And if you would like to learn more about seizures, please visit: http://www.epilepsyfoundation.org/.

What words upset you?  What jokes hit a nerve?



41 comments on “Seizures are No Joke
  1. Beautiful post, El. I don’t feel sorry for you. We all have our challenges. Living life fully is the best revenge.

  2. Great post, my friend. Shared everywhere I could. Love to you. xo

  3. Wonderful post, El ~ There’s absolutely NOTHING amusing about a seizure, and I thank you for standing up to state that fact, and for providing the educational link. As I see it, it’s usually the folks with some sort of major challenge that are the strongest. Not only do they/we have to deal with the challenge, but there’s also the fact that they/we have to learn to deal with the immature comments of other.

    Almost at 10 marathons? Whew!!!!!!!!!!! Congrat!!

  4. I’ve watched my daughter go SE for almost 5 hours. You are right. Seizures are no joke. It takes great courage to live life as fully as you are living it. May God and all the angels watch over you so that you can continue to watch over your three beautiful children. You are an inspiration.

    • And may God watch over your dear daughter, Julie Marie. I can only imagine how hard it would be to watch your daughter go through SE for five hours. I hope she is doing okay now? Thank you so much for your kind and supportive comments. Love and peace to you.

      • She was not in school yet when I knew I was watching her die. In my mind, I told her if it was too difficult for her to be here, she could go-that I would be ok. 20 minutes later, she stopped seizing. Maybe it was the paraldahyde, maybe it was the prayer. She is 33 years old now, and still has cycle-related seizures, but she is the brilliant light that God has allowed me to tend, and I am honored to be her mother. No need to post this publicly. Thank you for the response. You are an inspiration.

        • So relieved that she is okay!! I did not “Approve” this comment so your response will remain private (as you seemed to wish), but I did want to respond and to express my gratitude to you and to God for keeping her safe. Much love to you!

  5. Beautiful and honest as usual! You should be the poster child for how to LIVE with epilepsy.

    I lived with a boyfriend way back when who had epilepsy…often a gran mal daily. I still jump when I hear a certain sound that reminds me of the beginning of his seizures (which means I would run to make sure he didn’t fall into anything). The hardest part for him was when he had them in public. Either they would assume he was on drugs (stupid people) or they would help until he would appear fine and then they would leave, but his memory wouldn’t return for a while, so he always thought no one bothered to help and no one cared because he didn’t remember they were there in the first place. Sad every time.

    Epilepsy is no joking matter for sure.

    • Thank you so much Carrie!! Gah! Having them in public is — so far — one thing I have been spared of, thank God. I have them in my sleep, so it is in private, with only my poor, frightened husband around. I know exactly what you mean re his memory not returning. I never have retrieved all of my memories within a half-hour or hour of the grand mals. The first thing I remember hearing each time is my husband’s voice (sometimes I don’t know who he is) saying my name and filled with fear. But hey, life overall is good and it’s about living, not being afraid to die! xoxo.

  6. Great post, El. We have a student at school who’s been recently diagnosed with Epilepsy. They’re still adjusting his meds. I was second-on-scene last week as he seized. It is no joking matter. The boy is handling himself with maturity, as he always has done.

    Here’s to living our life regardless of what our “limitations” are.

    Great writing.

    • Thank you so much Leanne. Good for the boy who is handling the seizures with maturity, and good on you for being on the scene (I got chills as I typed that, I think because I am grateful for people like you who render aid in situations like that). And cheers to living life regardless of any limitations–amen!

  7. barrelkat says:

    Beautiful post, as always. 🙂 Epilepsy is no joke. My husband has partial brain seizures, a rarer form of epilepsy, that was brought on by a traumatic brain injury. He doesn’t have gran mals, but either fugue states or petit mals. I had a childhood seizure disorder, and still have some nuerological effects. We are waching our children closely, as our oldest has had 2 so far but a normal EEG. I saw first hand as an EMT what grand mals are, and they are not a joking matter.

    Bravo for you for living a full life and not choosing to let it slow you down or limit your life!

    • Thank you so much Barrelkat, for your empathetic remarks above. I am so sorry to hear about your husband’s partial brain seizures, as well as your childhood seizures. It is frustrating that they leave lasting neurological effects. Prayers and good thoughts re your eldest child. So often seizures are idiopathic and recur less or not at all as children age. You were an EMT? Good on you!

      Thanks again for sharing!

      • barrelkat says:

        Yes, I was a Firefighter/EMT, both professionally and as a volunteer in a very rural area of northern California. We had a local man who had severe epilepsy, and we saw him several times a year. I became very familiar with how epilepsy affects everyone connected to it. He was brilliant, but had been left unemployable because of frequent seizures. My mother in laws good friend has a daughter who was left severely impaired because of overmedication for seizures as a toddler. We have come a long way in the last 40 years on research into brain functioning!

  8. barrelkat says:

    Reblogged this on In My Own Sweet Time and commented:
    For anyone who has lived with a seizure disorder, whether themselves or a loved one, you know this is the truth. If you haven’t, please read-it’s nothing to joke about.

  9. Paula Kafury says:

    God Bless you my sweet. I always say we all have our cross to bear in this life. I would not wish for yours and I am sure you would not wish for mine. I applaud you on living a near normal life and not sitting around and feeling sorry for yourself. This blog is great, gets the word out there for the ones that really don’t understand. I am a nurse and have sat through many a seizure with patients, heartbreaking the havic it wrecks on your body. We must educate the public about so many diseases. Hang in there.

    • Thank you so much Paula. And I think you are right–we tend to grow accustomed to our own crosses, so to speak, and not wish to take any additional ones on (well, all mothers wish they could hold their children’s crosses I reckon). God bless you for your ministrations to patients as a nurse. You are my hero. And you hang in there too, kind friend.

  10. invaluablyme says:

    An important and beautifully written post. Thank you!

    To answer your question at the end of the post, for me, because my mother committed suicide 24 years ago, I find that I am disturbed whenever someone around me is telling a story about an embarrassing moment and feels the need to declare something to the effect of “I could have just killed myself,” or worse yet, chooses to form the pantomime of a gun with a hand and point the “barrel” of it at either the side of his/her head or at the roof of his/her open mouth–and mimic pulling the “trigger,” often with sound effects.

    For the record, my mother did not die from a self-inflicted gunshot wound, that’s not what disturbs me, but she did die by her own hand, and not because she was embarrassed by something she did. She did so after many years of suffering with depression and the weight of the attitudes of society and people around her that her depression was not serious and only a sign of her own “weakness” and “failure” as a human being. She just needed to “buck up” and “give more” and think less of herself. Such “jokes” as the one I describe above belittle the very serious struggle experienced by those with depression and suicidal thoughts. They also belittle the pain of those left behind.

    I’ve come a long way in my journey to heal from the loss of my mother, but I don’t think I will ever cease to be dismayed by the basic lack of sensitivity–whether it be about epilepsy, addiction, depression, developmental or cognitive or physical challenges, or whatever may seem to set someone apart from “the rest.” We ALL have challenges. This world would be a much better place if we recognized and embraced that and committed ourselves to avoiding making “jokes” out of any of them. There are plenty of wonderfully funny things to laugh about in this world without having to be insensitive to others. 🙂

    • Thank you my friend, and what a beautiful response. Thank you so much for sharing the history of your mom’s suicide. I am so sorry for your loss–even though it occurred 24 years ago, the reverberations of it are still felt and have been difficult to overcome from the sound of it. And I do not like those sorts of jokes either, or any about suicide or depression. These issues (mental health and suicide) are near and dear to me as well, and as someone who has suffered from MI and from suicidal ideation for decades, I do not consider either issue a laughing matter.

      I really liked what you said, as far as there is plenty of funny material that is not insensitive. This is not a matter of political incorrectness (a phrase that often excuses asinine behavior in my opinion)–just decency. Stay well, my friend.

  11. simplytrece says:

    You have such a terrific attitude – living the breadth AND the length of your life.
    I first heard of epilepsy via the 2-part episode of Young Dr. Kildare called “Tyger, tyger, burning bright”. Tuesday Weld, I believe, played a young surfer who had grand mal seizures, and was told to stop surfing. She chose not to, and died doing what she loved. Made a HUGE impression on me.

    • Aw Trece!! Happy Thursday my friend! Thank you so much for your kind remarks above–I broke into a grin when I read them!

      I love the story of the young surfer, and good on her! Why give up what we most love to do? That in effect is a form of dying. Granted, I have given up some risky activities because three children depend on me, but that is different because new factors (lives) weigh in the calculus! xo!

  12. There are so many things out there that people belittle and push aside, whether by using labeling terms in a negative way or by giving serious words an alternative ‘funny’ meaning. “Retard” is just one of many…I think it’s an educational problem. People judge/mock/disregard that which they do not understand. Posts like this help spread awareness of the real issues and (hopefully) get people to think deeper into what they say and realize that words MEAN something.
    And awesome blog…I’m glad I found it:)

  13. Anne McAntosh says:

    Dear El, As always, you are a hero to me and set a positive example for so many. I have read the responses to your beautifully written post and there is little left to add except a personal “Thank You”. Thanks for using your valuable skills and life-lessons to educate, inform, and remind us to be more sensitive toward each other and the challenges we face. You raise me to tears.

  14. Hi sweet Pardner.
    Just kep taking your medicine, and when you get up here in the fall… Let’s aim for a seizure free weekend. 😉 I need you around or a long time. This is so lovely. And it is a testament to your strength and courage. So many obstacles, and you just keep hurdling them!

    • Hello dear pardner. I hope the post comes out right tomorrow. I am wrestling with WordPress and it keeps making my guest post linkup thing disappear, but I am pretty sure I got it right. Thank you so much for your kind words. You are so, so wonderful, both as a partner and as a friend. xo.

  15. Theresa Danner says:

    Beautifully written, El – and a testament to living life to the fullest. My mother has had petit mal seizures most of her life, and I had some kind of seizures as a child, taking medicine for about 8 years, and I’ve had a few as an adult. Seizures seem to be closely tied to migraines, which I have, and I think it’s affected my speech, which embarrasses me frequently 🙂 Talking about your experience helps to spread the word, and awareness is so important. Epilepsy is an invisible disease – you can’t tell by just looking at someone (like you can see my daughter’s Down syndrome by looking at her). I’m so glad that modern medications and therapies allow you and others to inspire so many! One day, there will be a cure 🙂 Keep on keepin’ on, and continue spreading the word….

    • Thank you so much for your kind words Theresa!!! I am so sorry you have had them too, and yes: tied to migraines; and yes; me too re the speech (ugh–I still search for words). You keep on keepin’ on too my friend!!

  16. I’ve never been the best at accepting jokes to begin with, as it seems they usually target someone in some group stereotypically. So, unless we’re jokin’ with/about each other or something that involves all types of people and not just one particular group, I tend to steer clear. There are enough things to laugh about and enjoy in this life without spiting others. Aaaaaaaanyhow….what an inspirational story you have, El, it just keeps me reading more and more. Thank you for enlightening me on seizures and epilepsy and help making my Friday more positive! 🙂 XOXO-SWM

    • Hello Single Working Mom,

      Thank you so much for your kind and supportive comment!! And I often feel the same way about jokes. Too often “to joke” means to victimize, which is so unnecessary because there are so many wonderful things in the world to make us laugh! I hope you are having a lovely weekend!!

      xoxo,

      El

  17. Casual use of “OCD.” I have a child with OCD. She’s afraid of many things, this is what characterizes it. People wrongly equate their high standards and inner drive to maintain balance with OCD. If you don’t rearrange your furniture *just so* because you are afraid that if you don’t something bad will happen, then you don’t have OCD. My kid is afraid that touching something will make her turn into it.We have to watch her and monitor her hand washing and hand sanitizer use. She tries to save every scrap of paper she creates. Every. Single. One. I get angry when people talk about their OCD with a flipant smile. If you have OCD, you’re not smiling about it. Thanks for letting me vent, friend. Seizures are terrible. My mom has them often as a result of her drinking. No, they’re nothing to joke about. (Hugs)

    • My friend,

      Yes, I see how the constant undercutting of the real nature of OCD would rankle you! Like you expressed so well, the actual disorder is serious and not something to be tossed about as if it were a minor inconvenience.

      Thank you, sweetie, re the seizures. And hugs to you too.

      El

  18. El, I saw this on your FB page and had to come read. I am amazed at how many similarities we have. I developed a Seizure Disorder after I was shot and had a stroke on the operating table, no one knows why. I have been diagnosed as SE and manifest in two ways, with Grand Mal mostly at night (often in my sleep) and Absence.

    You did a wonderful job with this one, thank you for bringing it out.

    • Morning Val! I agree re similarities. This tells me that we’re both awesomesauce–grinning.

      I am sorry that you also have seizures, but not (of course) in a pitying way. Hell. It is what it is. And if anything, it just increases our degree of awesomeness!

      xo

      • I guess I will have to tell you a funny about seizures, it is a joke I share with my poor husband. I was single for a long time before I met and married him. I warned him and told him not to freak out, really I did. I sleep in a bed low to the floor and have large body pillows on the floor on my side of the bed (just in case). But you and I both know the first time someone sees a Grand Mal seizure it is scary, I get that. He called 911. I didn’t get mad.

        Although I had had my seizures under control for quite some time, there was a period of several years we struggled with escalation and severity. Now with new medication they are back under control, but back to the story.

        So he called 911, the first time, the second time, the third time and on and on. This was beginning to get on my nerve for a variety of reasons.

        I started sleeping in a t-shirt and yoga shorts. He complained loudly about my sleeping attire, ‘I want you naked in bed’ he said ‘like you use to be’. I laughed and said ‘I want you to stop calling 911 unless I stop breathing during a seizure. When I stop coming out of a seizure with strange men staring at my breasts and butt I will sleep with you again nekid as the day I came into this world’.

        He pondered this. He talked to my doctor about the seizures and how to recognize changes in severity. He realized there was little to be done except making certain I was safe, unless I stopped breathing or the seizures changed in some other way.

        He stopped calling 911 every single time and became very aware of what was happening. For a while he was super aware and would wake me for any little sleep movement, any nightmare. Ultimately though, martial accord and happiness was restored.

        • Val: I grinned when I read this! Your husband sounds a lot like mine! He used to take it so hard when I had a seizure, and he still stirs and looks panic-stricken if I make a weird noise in bed, but it’s been awhile since I’ve had one. xoxo

  19. mary says:

    i have seizures as well, im 22. I have had them since I was 14 and got my period for the first time. You are my idol. I have been told I can never drive, cant be outside after it is dark, couldnt attend my prom or any of my other senior activitities due to the lights, could never live alone and it would be a bad decision to have children. I always felt sorry for myself. Until 2 years ago when I saw someone in a coma due to a seizure. Now i have a beautiful healthy 2 year old daughter, Thank you for posting up, its inspiring.

    • Mary!!! I am overjoyed to hear about your daughter!! Congratulations my friend! And your kind remarks above honor me!! Thank you so much! And this is a good reminder–I got so busy working tonight I haven’t taken my Dilantin, so off I go, with a big smile!

  20. robtjr60 says:

    Dagnabit! I found this file called “Spam” on my page and I clicked on it. I could not believe the things in there that had been marked as spam and I had missed! This well written essay on seizure disorder was one of the many. My apologies. I have no idea why the security settings would mark this as spam and keep it from my fans.

    You know my seizure disorder and how often I’m affected by it. Like you, I’m not ashamed to admit it to my friends. I am blessed that I’ve only had one grand mal seizure. But, it did effect my entire brain and caused two strokes. For those that make fun of a person with a seizure disorder, I tell them to attach a big aluminum rod to there head and go stand in a field during a lightning storm. See how it feels before you make fun of a person with epilepsy.

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