COME SO ALIVE

Finding breath and beauty amidst the storm

Tag: epilepsy awareness month

Normal, Not Normal

By

On 11/20/2023

In Beauty in the Storm (epilepsy)

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.

*****
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

Why I wear purple hair (& how to save a life)

By

On 11/04/2022

In "Come So Alive" Origins, Beauty in the Storm (epilepsy)

As I’ve mentioned recently, I’m almost 50.  Fifty-year-olds probably shouldn’t be dyeing their hair.  Well, not purple at least.

The picture I chose for Come So Alive’s “About” page shows me with a full head of intense purple hair.  I wore purple hair for the first time on the day of our 2020 fundraising walk for the Epilepsy Foundation of Minnesota – which was cancelled due to covid.

More specifically, the large, Twin Cities’-wide walk was cancelled.  EFMN suggested individual teams walk around their neighborhoods, inviting others to join them and raising awareness through yard signs and chalking sidewalks (Remember chalking sidewalks in covid?  Someday people won’t know what that means).

Our team of two families decided to meet another family new to epilepsy at a county park with lovely hiking trails.  We all wore our purple epilepsy shirts, the moms painted their nails purple, and, for some reason, I wanted to dye my hair purple.

I’m still not sure why.

But I found a spray that washed out on the same day it was used and so bought a few cans to take to the park. 

As the families congregated, I pulled out the spray cans, explaining I wanted a swipe of purple on my bangs and down the side.  My friend’s husband’s eyes grew huge as I explained I had enough cans so we could all spray our hair purple.  I’m sure he went home grateful to be married to her that day and not me. 

As it turned out, five of us sported some purple hair for our hike.  I was the only adult.

The picture my husband took of my swipe of purple got so many “likes” on Facebook that I thought I must be on to something.  The next day I created a Facebook fundraiser for EFMN, offering to spray all of my hair purple and attend our city’s upcoming pumpkin festival – and take pictures to post to Facebook.

Shockingly, I exceeded my goal.  Friends were thrilled to embarrass me…I mean, support a good cause.

I have worn purple hair in public for three years now as friends have continued to support our yearly fundraiser.

And by supporting that good cause, those friends are supporting us.  They are supporting my son as he grows up with epilepsy, maturing faster than other kids because he has to manage meds and sleep and missing out on evening activities with friends.

I wear purple hair so he doesn’t feel alone in epilepsy and so he is never ashamed or feels he has to hide it.

I wear purple to bring awareness to a disease that is often hidden and largely misunderstood. 

It’s Epilepsy Awareness Month, but if epilepsy isn’t part of your life, do you really need to be aware of it?  Well, 1 in 10 people will have a seizure sometime in their life.  Would you know how to respond?

If you get nothing else from my blog posts, please remember this:

>>For a convulsive seizure, never put anything in someone’s mouth.  Yes, it sounds like they are choking or will break their teeth.  They won’t choke unless something is put in their mouth and what is forced in their mouth can damage teeth more than the seizure itself.

>>Make sure they are lying down, something soft is under their head, and roll them onto their side.  People often can’t swallow during and/or may vomit after a seizure so being on their side can prevent them from aspirating fluid.

>>No matter the type of seizure (there are many like staring or lip smacking), stay with them until the seizure ends.

>>If the seizure doesn’t stop within 3 minutes, call 911.

>>If they turn blue, don’t regain consciousness after the seizure stops, or another seizure starts, call 911.

>>If you are scared spitless (because they still terrify me even 8 years later), call 911.  EMTs are trained to assess if the person needs medical assistance.

>>Most seizures are not life threatening.  But some may be.

There, now you are epilepsy aware.

So, I wear purple hair because it’s noticeable.

And maybe by noticing it, you’ve read this post.

And maybe someday, because you’ve read this post, you can respond to a seizure and possibly even save a life.

Because I wore purple hair.

Click the link for a downloadable seizure first aid chart.

Other resources:

Epilepsy Foundation of America

Epilepsy Foundation of Minnesota

CURE Epilepsy

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