Everyone remembers their first

I remember my first seizure like it was yesterday.

There are very few that stand out to me, mostly because I choose to forget them – they aren’t the warm fuzzy memories that mark a special occasion – but everyone remembers their first.

I was 17 and getting ready for prom. I had bought a gorgeous coral dress, which was a little too big, and my mom had picked myself and Andreah (Dee) up from school to get it hemmed. She took us to an apartment in a nearby city, which stood adjacent to a mall. Whose apartment it was I couldn’t tell you, but I do remember that my mom found the seamstress through someone at church. I remember that she had just had a baby. Before we went up the elevator to her floor, I remember telling my mom I was hungry, to which she promised to pick something up once we were done. I don’t think I was actually hungry, but I couldn’t put my finger on what I was feeling.

The seamstress had just finished placing the pins with precision in the fabric, making a map for herself later to follow, when she asked how I thought the dress looked… That’s when it happened…

I tasted copper, or like a penny was on the back of my tongue, everything got hot, I was falling, and I couldn’t grab anything.

Then pain, the worst pain I have ever felt in my life. I wish I could compare it to something else, but there is nothing I have ever felt before that could come close to it. The best I can do for you is a muscle spasm, but much more intense, and just as it came it was gone. My mom will tell you it was longer than what I felt – when I am having a seizure, tracking their length is the last thing on my mind.  I was tired and I wanted to do nothing more than to sleep, but the pain kept me in a state of between, as if I was awake, but still dreaming.

I felt hands, familiar hands, the hands of my mom who was now calmly telling Dee to call 911 as she was taking the dress off. I could feel the pins scratch against my skin and it was a comfort to feel something other than that pain.

“It’s okay I am here, I have you. It’s okay. Andreah you are going to need to tell them the apartment number and the floor. I am here, I have you.”

My eyes wouldn’t open…sleep, my body was telling me, just sleep.

“Andreah, grab her clothes and give them to me. You need to calm down, I have to take care of Jacqueline. She is going to be okay, just breathe and talk to the police.”

Then more hands, hands of someone I didn’t know, and my mom was giving the hands my information.

“She fainted and hit her head, she started to shake, I don’t know what happened, she was saying she was hungry, she is hypoglycemic.”

Warm air – I was outside – then a woman’s voice unfamiliar to me, “We are taking her to the hospital. You can meet us there.”

I was alone, blood was being taken from me, something was being pushed into my arm, another needle. Then dark and quiet.

I remember waking up in a wheelchair, I was in a waiting room, and Julia and Toni were there, and Ben… Oh, Ben. Andreah was sitting, staring at me. I looked up and saw Julia, I wanted to say hello, but I couldn’t find the words. Instead a classy stream of drool came out of my mouth, and tears from my eyes. I was so tired, and sore, then sleep came again.

I was in a bed being woken up by a nurse – if I had a concussion I wasn’t allowed to sleep (which is a stupid rule). Mom was still with me. Thank God – there would have been no way without her. My protector, fighting for me with nurses, and the doctors that I saw. Waiting for me through the numerous scans throughout the night. All the while holding it together.

Later, I was up and fully functional. The first one is always the hardest to get through, at least in my case. I took them like a champ after that! The doctor told me I had had a tonic-clonic or a grand mal seizure. He recommended we follow up with a neurologist as soon as possible, because they couldn’t see why I had had one. Thus started the battle that is epilepsy.

There have been so many seizures after that, and soon after my first grand mal seizure, I would come to find out I had had many more before it called complex partial seizures.

I don’t like talking about it, because I hate the look of sympathy in people’s eyes and I in no way have it worse than many other people with epilepsy. I have never had to have major surgery in order to improve my way of life. Yes, I have been yo-yo’d from medication to medication, but I found what works and now I am four months strong seizure-free with no medication.

I have the utmost empathy for those who live and fight epilepsy every day, constantly looking for a cure, medication, therapy, or treatment that will help them cope with their seizures. The brain is a tricky mistress and she is constantly changing and challenging us. I also know that a lot of us couldn’t do it without our amazing support systems, taking us to appointments, watching helplessly as we go through yet another one.

I am so lucky to have someone in every corner of my life who has been there for me during an “episode”. I have been babysat by my best friends when I was changing medication and couldn’t be alone, and held close by Cody while I was having yet another seizure in the middle of the night. My mom, who has driven from Waterloo in the middle of the night because I was having too many or getting calls midday from work, letting her know I had another one and she needs to come get me. Toni and Julia, who babysat me when Cody was away, especially Julia who has dropped everything to come pick me up from work so I can go home and sleep and she can watch me. Dee, who I first tortured, and who ever since has called me whenever I have one just to make sure I am okay.

And oh my goodness, my supervisors Terri and Andrea at work, who literally put in place a procedure to help me get through a seizure (some of my work family still have the procedure pinned to their desk areas, emergency numbers and all), especially Andrea who was designated my seizure buddy at work, who watched as I worked through one, and waited time and time again for me to wake up.  All the many mama bears (you know who you are) who waited until the bathroom was no longer “out of service” to know I was okay.

You all mean so much to me! There are no words…except these I have to share:

Before you can see the light, you have to deal with the darkness. - Dan Millman

Thanks for being my light. ❤

~ Jacqui

Ed. – For more information or to find out how to support epilepsy research, visit www.epilepsy.ca. Show your support for epilepsy research and people who live with epilepsy by wearing a purple ribbon on March 26, Purple DayWe LOVE you, Jacqui!

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4 thoughts on “Everyone remembers their first

  1. Hello, I really enjoyed reading your post and can relate. I have epilepsy myself, absences so different to yours, but I saw that you said that you found what works and don’t take medication. I wondered if you would mind telling me how you managed this? I understand you don’t like talking about it and appreciate that everyone is different, but I would be so grateful if you could share what worked for you. My email is anothersteppingstone@gmail.com if you would prefer. If not, never mind and I hope you continue on the seizure free path.

    • Hi Victoria! I am so happy you relate and am over joyed that I reached out and touched someone with my post. Keep a close eye on your email for what my regime is!

  2. Pingback: You asked, we answered! | Weather Vane Sisterhood

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