No Worries about a Grand Mal Seizure

Once I got home from my third hospital stay in October I was looking forward to Halloween. I had a Minnie Mouse costume and Melody had promised that she would take me trick-or-treating with her kids. It seemed like everything was going to plan, not even in the back of my mind did I have a single worry of a grand mal seizure sweeping in and crushing all my plans.

Trick or Treating and Types of Judaism

I had only gone trick-or-treating one other time in my life.  Growing up as a Modern Orthodox Jew my family didn’t believe in it.  As a young adult, I leaned more toward the Conservative Jew side.  I had no other choice but to drive to the synagogue on Saturdays.  It was way too far for Jeff, or anyone else to push me there in a wheelchair. Modern Orthodox Jews don’t drive on Saturdays. Anyway, I liked the fact that in Conservative synagogues men and women were considered equals. I also liked that there was no separate seating for men and women. One of my favorite things was that I could go up to the Bimah and say the blessings over the Torah myself. It didn’t matter that I was a female.

As a Conservative Jew, I felt more comfortable celebrating a holiday that was really just a commercialized public American way to have fun, dress up, and get candy.  It had nothing to do with any religion anymore.

Trick or Treating the Year Before Without a Grand Mal Seizure

The one time I went trick or treating I had a great time.  Jackie took me the year before. She helped me get all dressed up in the coolest Poison Ivy from the comic Batman costume. Jay, her boyfriend, had come along too.  Jay was a pretty cool guy. He suffered from ulcerative colitis and had grizzled through multiple surgeries and hospitalizations as well.  We spent quite a bit of time trading chronic illness stories.  Jackie and Jay pushed me all around town until I had an overflowing Hello Kitty pillowcase full of candy.

As I thought about the year before I got more and more excited. Nothing was going to stop me, I thought to myself. What I wasn’t aware of was the seizure activity starting up inside my brain or the fact that it was putting me at high risk for a grand mal seizure if I didn’t slow down and rest. I have never been very good at allowing my brain to rest.

Countdown to Halloween

When we got back to the house, I divided up the candy between Jackie, Jay, and Jeff.  It had been so much fun getting all the compliments on my costume, seeing everyone else’s costumes, and how much candy I could possibly get.  It didn’t even really bother me that I knew I couldn’t eat the candy, it was just fun collecting it.

This year I started counting down the days until Halloween, I got my costume all ready to go and even tried it on a few times.  That way I could figure out how to style my hair the best with the costume and to see if there were any accessories that I wanted to add to it. Maybe I allowed myself to get too excited? maybe that’s what triggered the grand mal seizure.

Whatever the trigger was, the morning of Halloween, it happened.

In the Minutes Before the Grand Mal Seizure

Jeff was transferring me back into bed after we had returned from the store armed with a sugar-free Iced tea for me, a bag of chips, a bag of gummy worms, and a sub for Jeff.

The plan was for both of us to get in bed and watch the third Bad Boys movie.  Jeff was all excited about it.

“You’re going to love this one,” he was saying.  “It has all of the characters from the first two movies, but this one is even funnier and the plot twists are even better.”

I didn’t have the heart to remind him that we had already watched this movie three times together.  He was too cute getting all excited about having me watch it for what he thought was the first time.  His brain injury tended to affect his memory. Besides, it really was a good movie, it had a lot of really funny parts, and a lot of edge-of-your-seat action parts as well.

Jeff took my IV bags and pump and feeding tube bag and pump off the IV pole on my wheelchair and then put them on the IV pole near my bed.  Then he put his hands under my arms and started to lift me up out of the chair and onto my feet so that I could stand and pivot into bed, but all of a sudden I smelled blood.

A Grand Mal Seizure

A split-second feeling of dread came over me.  That smell of blood was my aura, my sign that I was about to have a grand mal seizure.  I had no time to react.  Suddenly I felt like was falling through bumpy darkness, everything felt very bumpy, I was briefly aware of the feeling of my head bouncing back and forth against the metal railing on my bed, and then there was softness, and then falling through bumpy darkness as light and dark flashed before my eyes.

Then finally the bumping and flashing stopped and I was lying in bed.  Jeff was almost on top of me, holding me down on the bed, he was talking on the phone.

“Yeah 120 Onota Street in the back building at the bottom of the hill. She was having a grand mal seizure.  At one point her head was hitting the railing of her bed and she started to slide out of my arms, so I picked her up, put her in bed, and was holding her until the seizure stopped.

Waking up Postictal

“Are you awake Becca?” Jeff asked me.

I mumbled the word, yes but everything felt so heavy and far away. All I wanted to do was close my eyes and go to sleep, but I realized that I must have terrified poor Jeff who had apparently just saved my life by stopping me from bashing my brains out on my bed’s side rail during the grand mal seizure.  If I let myself fall asleep he would freak out

“I’ve never been so scared in my life,” Jeff said. After he got off the phone.  “For a few seconds, I thought you were going to die or something.  There’s an ambulance on the way.”

Thank you so much,” I said, drawing my words out slowly. I was so exhausted that I felt drugged.

Waiting for the Ambulance

“Well, I couldn’t let the love of my life smash open her head on my watch,” he told me.  “I don’t freak out in an emergency, you have to stay calm, cool, and collected and just do what’s necessary.  Later when it’s over you can go back over it in your head and go ‘Fuck, that was some crazy shit!’  But you needed me to react calmly so that I could think straight,  so I picked up your thrashing body, put you in bed, and held you there while I called for an ambulance.  Thank God you come in the child-size version.  It was hard enough getting you in bed while you were thrashing and jerking like that.”

I could hear Jeff talking but was so tired that I couldn’t bring myself to come up with a return response.

It took EMS a whole fifteen minutes to get there.

“Thank God you’re not still having that grand mal seizure or we would have his and hers traumatic brain injuries.” Jeff joked.

Dealing With EMS

When EMS finally got there I let Jeff tell the story of what had happened,

“She looks pretty postictal right now,” agreed one of the EMTs.  Referring to the state you go into after any type of seizure where your body is just completely drained of energy for anywhere from minutes to hours. A seizure, especially a grand mal seizure, is quite exhausting to the body. It uses all of the body’s muscles and engages them very violently.

I didn’t really want to go to the hospital for a 30-second-long grand mal seizure that was over. There was nothing the hospital could do after the fact, but I knew Jeff would worry if I didn’t go. Also, I was extremely postictal and would not be able to move for at least an hour. Not even to roll over in bed. it could take even longer than that. That would really freak Jeff out, who had just thought he had almost lost me.

“Do you want to go to the hospital?” One of the EMTs asked me.

“Yes,” I said, but I was so exhausted that my voice came out as a whisper,

“What did you say?  The EMT asked.

“She said she wants to go,” Jeff told them.,

“Is that what you said?” the EMT asked.

I nodded my head.  Even that simple act drained me even more,

They grabbed onto the soaker pad that was underneath me, one EMT on each side, and slid me with the pad from my hospital bed to their stretcher.