I received a Facebook notice last weekend that I had a memory to look back on. Oh boy! Looking forward to something cute or funny, I clicked the notice and saw this post:

Oh. That’s right. Just an EEG. Nothing fun or cute or exciting. Except in rereading it, I realized I had caused some excitement for our friends, but not the good kind. More accurately, I had freaked out my friends who thought something bad had happened to Cody because he needed an EEG.

The thing is that EEGs are normal for us. Cody doesn’t remember a time when he didn’t have to have regular EEGs. I’m starting to not remember it either.

Epilepsy is chronic. Even if medication controls the seizures, epilepsy doesn’t usually go away. In general, there is no cure for epilepsy.

Once it’s your new normal, it will likely always be your new normal. Which means abnormal electrical activity becomes normal. EEGs become normal. Regular hospital stays become normal.

This month is Epilepsy Awareness Month – and I am so sick of epilepsy that I had planned to take a break from posting about it. But when it’s your normal, you never get to take a break from it.

Cody was invited to a birthday party this summer…which coincided with an overnight EEG. Fortunately, the party was a sleepover so started later in the day and Cody was discharged from the hospital in time to attend, the supper and gift opening part of the party at least. (He can’t do sleepovers…because abnormal electrical brain activity…that causes seizures especially with lack of sleep…)

Before we knew what time the party started, he had texted his friend group that he may or may not be able to attend because of an EEG. Again, freaking out of friends occurred. All the boys on the thread responded, some asking if he was ok. Two responded with information they had researched to better understand EEGs and share their new knowledge with the group (💜💜💜).

But they were all concerned – because an EEG is serious. It is scary. It is not what most people ever have to deal with (thankfully).

Yet it is our normal. Seeing my old Facebook post reminded me of something I have forgotten over the years: adjusting to a “new” normal doesn’t make it normal.

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1 in 10 will have a seizure in their lifetime. Click here to learn about seizure first aid:
https://www.epilepsy.com/recognition/seizure-first-aid