The Day I Woke Up with Epilepsy

It’s embarrassing to admit now, but the night before, I wasted a lot of time.

I stayed up late and ate junk food and watched re-runs of Tori Spelling’s reality show.

Eventually, I went to bed.

I don’t remember much about the next morning, but it was a day that changed a lot for me.

I woke up, put a slab of puffy cinnamon rolls in the oven and jumped in the shower. I recall wiping some water out of my eyes, but after that, everything gets fuzzy.

The Day I Woke Up With Epilepsy

Everything Changed

When I came to, a paramedic was telling me how much he liked our house and held my hand while I cried. My husband Brad appeared at the ER where a nurse said I’d had a seizure and couldn’t drive for three months. I started to cry again because I’d just signed my son up for Little Tykes basketball. How would I get groceries? Or have coffee with my Gram?

I started to cry again because I’d just signed my son up for Little Tykes basketball. How would I get groceries? Or have coffee with my Gram?

I looked at Brad and he leaned over the bed and smushed me with a hug.

At the hospital, they gave me a CT scan and sent me back home. I had a million questions in my head, but I was too tired to think. Back home, Brad helped me snuggle in. I heard him turn on College GameDay and I fell asleep.

When I woke up this time, I was in the emergency room again.

I’d had another seizure in my sleep. Our small town hospital could only offer to monitor me for a few days. Brad wanted me to head to a bigger hospital a few hours away and finally, the ER doctor agreed.

The weekend that started with cinnamon rolls and extra TV turned into a whirlwind of doctors and tests, IVs and hospital food.

I didn’t know what was wrong, and it scared me more than anything had before. I cried during the EEG when I was supposed to be in a sleep-like state. Inside the MRI machine, I sang choruses from Sunday School to myself. And in between the waiting, cousins cracked jokes. Trashy magazines were shared.

I cried during the EEG when I was supposed to be in a sleep-like state. Inside the MRI machine, I sang choruses from Sunday School to myself. And in between the waiting, cousins cracked jokes. Trashy magazines were shared.

A Diagnosis at Last

The neurologist finally told me.

“You have epilepsy,” she said in her warm Jamaican accent.

No brain tumor. No cancer. Epilepsy.

At that moment, I felt relief.

Epilepsy was a deep exhale while I wore a hospital gown, but navigating it in real life was harder. In the first few weeks it brought piles of anxiety. I wondered every second if another seizure was coming.

A New Life

Adjusting to the medication was hard – so, so hard.

I hated asking for help with rides and wearing a medical alert bracelet made me feel so conspicuous.

Epilepsy ended the feeling that because I was young (ish), nothing could happen or that since I had littles, I would always be able to haul them to beginner dance class or be around to badger them about their veggies.

And now, two years out from my diagnosis, some lessons were easy: dial down the reality TV time.

Others are harder for me, like learning not to treat self-care like an after-thought and trusting that it’s not a crime to ask friends for help.

Epilepsy reminds me every day that there is no crystal ball into the future, but – just like life – having a diagnosis isn’t really about knowing. It’s more about learning and living and, just maybe, sneaking in a smidge of reality TV.

 

Sarah Berthiaume, a freelance writer who lives in the Maine woods, spent close to 10 years covering community news for a local paper before she became a full-time mom. Now, she divides her time between scribbling stories, finding new family adventures and snuggling her persnickety Schnauzer. She’s also a newbie blogger at scribblersarah.com

Have you ever seen anyone have a seizure? If you did, would you know what to do? Take a look at this post so you are prepared and can help!

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