Epilepsy Talk

The First Time… | August 29, 2020

I remember five jets of water, pummeling me from the shower walls and ceiling.

All of a sudden, a metallic taste in my mouth.

Strange and disgusting.

I continued to wash my hair, which was long and took forever.

Suddenly my mouth filled with saliva.

“Oh, it’s just the water,” I thought. (How dumb was I?)

Then I started to drool.

My blood felt like it was whooshing out of my body, through my toes.

Time to get out of the shower.

But I couldn’t.

“Oh no. I’m going to drown.”

A heavy wheel-like handle prevented my exit.

I pushed it, turned it. I threw myself against the door.

I was going down for the count.

And as I did, I screamed. I thought it was all over.

Then nothing.

I awoke — to more screaming.

Body half in and half out of the shower.

I knew something was desperately wrong.

But I didn’t know what.

Just that I was still alive.

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  1. […] The First Time… — Epilepsy Talk […]


    Pingback by The First Time… — Epilepsy Talk – Epilepsy & Cerebral Palsy — August 29, 2020 @ 11:33 AM

  2. WOW!!! How am I really to rem,ember my 1st seizure if that’s what you want me to explain when it happened at 5 months old ? The 1st time I do remember having a seizure, which I was thinking stomach feelings can’t be a seizure, but it was a petit mal I was having & it all had happened long before I felt that feeling before I actually did take notice what was happening. Then in 1969 A HOT & HUMID MAY DAY, my mom & grandmother were at home & I was feeling bad. Grandmother says to mother, ”let’s the 3 of us go for a ride to cool off maybe” and we went with both me & grandmother in the back seat. No sooner we start out, no more than a mile away from home, I started feeling bad again in my stomach, & later it became what I knew my 1st GRAND MAL seizure & a trip to my doctors office no more than 1/2 a mile away. TOWN living then. That’s all I remember of that except later I had a fever, when before that happened i had NO fever at the time except I felt HOT & LIFELESS from the heat & humidity after the GRAND MAL I had. 50 years later it can be like a repeat how it can all happen today.

    Liked by 2 people

    Comment by James D — August 29, 2020 @ 11:34 AM

  3. Love ❤️ this writing skills! I wish I could describe my seizure that clearly! I give you a hug!

    Liked by 1 person

    Comment by Toni — August 29, 2020 @ 11:57 AM

    • All hugs are welcome!!! 🙂

      But I bet you could describe that first seizure…if you remember it. Which is a big “IF”!


      Comment by Phylis Feiner Johnson — August 29, 2020 @ 12:40 PM

  4. Very moving & Happy you awoke x

    Liked by 1 person

    Comment by Maria — August 29, 2020 @ 2:34 PM

  5. Thank you Maria. BIG hugs to you, too. 🙂


    Comment by Phylis Feiner Johnson — August 29, 2020 @ 2:38 PM

  6. I only have Grand Mal Seizures a few times a year, os of course my first had to be a Grand Mal in Math class grade 11. It was especially bad for me as I was at the front of the class at the blackboard. 😦

    Liked by 2 people

    Comment by Donna Jones — August 29, 2020 @ 2:40 PM

    • Oh, that must have been embarrassing. I remember cracking my head on the counter in chemistry lab. I was 16. Not a pretty picture.

      But even worse than the seizure was the adolescent ostracism, whispering, and people from my class keeping their distance after that. As if I had the plague or something catching.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 29, 2020 @ 2:50 PM

  7. About all I could tell you is when I was three, I made a habit of grabbing people by the leg, asking them to hold me because I was scared and then running off like nothing happened. After the fourth or fifth time this happened, my parents finally took me to the doctor to ask what they felt it was and they said, “It could be epilepsy but it’s just a minor form.”

    The part I won’t forget is how much my mom didn’t want to believe it. Things got worse but every time someone saw me have a seizure, she said, “But it’s just a minor form.” She just couldn’t face reality and all that did was make me think I was her problem and I needed to hide it, too.

    Liked by 2 people

    Comment by Ed Lugge — August 29, 2020 @ 4:38 PM

    • My parents wouldn’t say the “E” word. My step-father, who was a surgeon, said I had “uneven brain waves,” my step-mother who was a psychologist, just made me feel like a clutz, and my mother ignored it.

      The only one who took it seriously, when I had a full-blown seizure was my dad, who took me to the neurologist. I was in my father’s office when the neurologist called and my father said: “NOT EPILEPSY!” as if I had the scourge.

      From then on, he treated me like a fragile piece of glass, always afraid I would break. Good thing he wasn’t around when I broke my nose!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 29, 2020 @ 4:48 PM

  8. I have partials, but wow that sensation you described about the blood whooshing out through your toes is so accurate to what I’ve experienced! When I’ve had really bad ones, I have felt just that, like my blood is leaving and I’m going out of existence soon, and that frightening desperation to get to safety. Thank God you were okay, showers are so dangerous. Interestingly, I remember I had a bad one in there once.

    I recall my first time so clearly. I was in sixth or seventh grade and I was walking in the school parking lot at recess with a couple of friends. The sky was very heavily overcast, and suddenly I got a powerful feeling of doom (though oddly not unpleasant) and the sky looked like it was coming closer upon me, and I said “The world is ending!” and then my vision/hearing blanked out and then returned. My friends were talking like nothing had happened and I figured it was just some weird thing that happened to everyone. I had these from time to time until I got very nervous at a doctor (unrelated) and fainted. The feeling before fainting was just like my blanking out episodes. After that, I became terrified of them. Crippled my life in many ways. Years of therapy and meds until one blessed day a neurologist diagnosed me.

    I hope to read more “first time” stories. It’s really fascinating in a sort of macabre way 😂

    Liked by 1 person

    Comment by Hetty Eliot — August 29, 2020 @ 5:04 PM

  9. Oh Hetty, how scary. The sky is falling. The world is ending. And everyone else carried on like business as usual. (That must have been weird.)

    Therapy has been a godsend to me. Even though I was diagnosed and my seizures are 99% controlled.

    I’m sure being diagnosed, while perhaps being scary, was quite a relief. At least you knew you weren’t going crazy or that it was “all in your head”!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 29, 2020 @ 5:31 PM

  10. I remember my first seizure too! I was sitting at the kitchen table, and my mom was cooking dinner. It was the summer before I started college.

    I remember feeling like I got drop-kicked in the temple.I saw black closing in around me but I couldn’t speak. I was going into a tunnel backwards through train tracks. Then all of a sudden my head was in my hands. I looked up at my mom, and she was crying.

    “Why are you mad at me?” she asked, her eyes filled with terror. “I thought you loved me! All of a sudden, you start yelling and swearing at me and flailing your arms. Then nothing! You won’t even speak to me!”

    I had no idea what she was talking about. i was dazed and confused. I started to cry.

    I told her I had an awful headache and i felt like I was going to throw up.

    I had had a complex partial.

    It happened again, probably about a week later. Same scenario.

    Thank God my mom was a nurse. She put two and two together. She also realized I could not have hated her, because she was my whole world.

    She got me an emergency doctor’s appointment and urged him to have me see a neurologist. I was diagnosed with epilepsy a month before I started college. My life was never the same.

    Liked by 2 people

    Comment by Mary Ellen Gambon — August 29, 2020 @ 11:05 PM

    • Oh it must have been miserable for you and your mother. The emotional turmoil and confusion. But at least your mom was a nurse and had you diagnosed post-haste.

      How it would have affected college, I hesitate to say. My college experiences were quite a muddle.

      But Mary Ellen, look at what you came to be.

      An ace advocate, an award-wining journalist and a voice to be be heard, loud and clear!


      Comment by Phylis Feiner Johnson — August 30, 2020 @ 10:18 AM

  11. Oh Phylis, thank you! Yes, college was a pretty scary time. I had been in driver’s ed and was about to go for my license – so obviously that never happened.

    And it never occurred to my to give up my dream of pursuing the journalism degree because I could not get a job on a major paper without the driver’s license. I just assumed that with the newly-implemented ADA that there would be a way to get around that. I am still fighting that battle 30 years later.

    One of my biggest epilepsy memories of college was trying to get my hair done in Kenmore Square in Boston. I was leaning back into the sink when I must have had a seizure. Of course I have no recollection of the event itself. All I do remember is running through Kenmore Square for a couple of blocks, my hair sopping wet and the cape streaming behind me like some sort of deranged superwoman. Aquagirl? Epilepsy Chick? Should I have had a big E emblazoned on my chest?

    Strangely enough, part of me almost blended in with some of the odd assortment of characters I had been unaccustomed to in my young life – the homeless people, drug dealers and fellow college kids with multicolored hair and torn clothes – this was 1990 after all.

    I trudged back to the salon, my head hung in shame.

    My hair stylist put her hand on my shoulder.

    “It’s okay, honey,” she said. “My sister has epilepsy.”

    Liked by 2 people

    Comment by Mary Ellen Gambon — August 30, 2020 @ 10:38 AM

  12. Wonderful story about your hair cut dilemma.

    Also, how brave of you — and persistent — to take on a job that no sane person without a car would attempt. Further proof of your moxie and indomitable spirit.

    Mary Ellen, you are a wonder. And a wonderful person, too.


    Comment by Phylis Feiner Johnson — August 30, 2020 @ 10:51 AM

    • Oh thank you! Sometimes I wonder if I am a tad insane, of if that concussion did too much damage. But I just love to write and to have people have their stories brought to light. And you have been an amazing friend and support system for me and so many others!

      Liked by 1 person

      Comment by Mary Ellen Gambon — August 30, 2020 @ 1:59 PM

  13. I remember the old Cadillac ambulance bouncing up our half mile long road from our farm house. For some reason I was the passenger. It was early Saturday morning in November 1973, and after five months of having myclonic jerks shortly after rising in the morning, I finally got what was brewing…a full on tonic clonic. I was in the bathroom getting ready for work. Mom told me that my dad couldn’t get the bathroom door open, so he was about to kick it in. She stopped him just in time…it was me on the otherside. It was 35 years later that I learned about myclonic juvenile epilepsy after my seizures awoke from years of slumber. Tonight. My mom lies in a hospital bed after suffering an ischemic stroke. She taught me to appreciate life, be tough and take my meds. Hang in there mom.

    Liked by 2 people

    Comment by Tom Waltz — September 2, 2020 @ 12:43 AM

    • 35 years for a diagnosis. That’s outrageous. After all that suffering which could have been abated or maybe even avoided.

      You are tough, Tom. To get through that and to go through your mother’s stroke.

      I salute you for your positive attitude, one that we all should adopt.


      Comment by Phylis Feiner Johnson — September 2, 2020 @ 10:07 AM

  14. I don’t remember my first seizure, or indeed any of them really, as I generally get no warning beforehand, and have no recollection of what went on during them afterwards, which is kind of spooky. Once I felt faint, and got off my bicycle, but there was another reason why that could have been the case, so I didn’t realise in advance that a seizure was coming. I’ve come round several times with the paramedics waiting for me to come round – I’ve been outside the home, and someone has seen the seizure and summoned the ambulance. I wish there was some way to stop people doing this, however kind, as it mostly isn’t necessary, and just makes the whole thing more stressful. Luckily in the UK we have the NHS, so it hasn’t been as expensive as it could have been if there was no free healthcare. I remember the hallucinations, etc. that took me into the near-death illness that involved and/or started my first seizures – they were quite intriguing – but I don’t remember the seizures. I had an EEG during that hospital stay, and was apparently responsive throughout, but have no recollection of it … (amnesia was another of the symptoms of the illness). Again, disconcerting.

    Liked by 1 person

    Comment by Phyllis Green — September 4, 2020 @ 8:58 PM

    • How completely scary. Such serious illness with no inkling when or why.

      As for ambulances, I agree Phyllis. But people are so frightened, they just don’t know how to react or what to do.

      As you said; they mean well…


      Comment by Phylis Feiner Johnson — September 4, 2020 @ 10:02 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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