When my website crashed a few weeks ago, I began to wonder if it was time to let it go. Not stop writing, because I can do that directly to Facebook and Instagram, but let the website itself go…because, really, I’m the only one who looks at it. It’s a creative outlet for me to design the font and photo layout for each post, but maybe that was time I needed to start focusing elsewhere.
So, I started evaluating my personal and blog social media accounts, which have evolved over the last two years. This was an unexpected pause, but it gave me a chance to stop and plan how each account should look. I lost count of the number of edits I made to my personal Instagram profile because to say my writing is eclectic is a bit of an understatement.
I fixed ComeSoAlive.com but I still wondered if I should keep it. I wondered how to “market” Come So Alive, especially in a world of social media-worthy pictures and the right hashtags, neither of which I excel at.
Then I reread one of my very first posts, “My Armor for fiercely facing the storms of life.” Someone I had just met asked for a sample of my blog posts, and I knew I wanted to include that one because it explains why it’s called Come So Alive. I opened it to send her the link…and read my own words for why I write.
“I woke up and had the thought,
’I should start a blog.’
‘I hate blogs. Why would I write one?’
‘To share hope and light the path for others,’ came the reply.”
Huh. I had forgotten that in the last two years.
Then the pieces fell into place. I don’t write to cover a certain topic. I write about where I find hope and beauty so I can remember them, so I can hold on to them. Because I forget. Regularly.
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.
I anticipate with excitement a certain day of the year, every year. I can’t tell you what day it is, though, because I don’t actually know. To be more specific, I don’t ever know the exact date until the day it happens but the event that I anticipate, that I can tell you, I love the day my peony opens! Or peony, depending on how you pronounce it.
That day also happens to be a day I dread, because it rains that day and beats down my beautiful peony blooms, light pink, double blooms as big as my hand on tiny little stalks. It rains that day. Every. Year.
This year the gloriously painful day was June 15th. I know the exact date because I took pictures of the bloom. It was sunny in the morning when I awoke to several massive blooms that had popped open overnight – but by 11:30 a.m. the sky had turned cloudy. I decided to take a picture so I could enjoy their beauty longer, knowing they would only survive a day or so.
As I squatted in the dirt so my camera was even with a bloom, thunder clapped somewhere in the distance.
Or as my niece used to say, “Miiiiiiiiiinnne” with big, blue eyes and a small, plaintive voice. I swear, as a two-year-old, she had a whole legal argument in that one long, drawn out word.
Almost a year ago, I wrote about reclaiming the 8th anniversary of Cody’s epilepsy diagnosis on October 23, 2014, by hosting our fourth fundraising concert on that day this year, but, really, we had started riding the epilepsy rollercoaster August of 2013 – we just didn’t know it yet.
Cody’s first, out-of-the-blue seizure was on my 40th birthday. Well, technically, it was at 2:00 a.m. the day after my birthday but close enough.
Because the ER doctor that night thought the seizure was provoked by a fever, we didn’t get an accurate diagnosis for another 14 months (and two more seizures).
There have been minutes in the last eight years since hearing, “Cody has epilepsy” that were unbearably, painfully long, where I literally had a hard time breathing, and yet the years have gone by in a breath.
If I knew then what the epilepsy rollercoaster was going to be like and how long it would last, I would have spent those years living in terror instead of living each day growing in strength. Each day since then was needed to get me to today. Carrie at Day 1 wasn’t able to do this for eight years. But each day has been like training, making me a little stronger. . .and a little stronger, so Carrie today can do this for eight years.
I wrote this for the ComeSoAlive.com “About” page almost two years ago as I designed a website for the new blog idea I had…the blog I didn’t really want to write. I also wrote it when our worst storm was my son’s epilepsy – before we knew a stroke storm was on the horizon…the storm I thought may be the end of my writing. But since deciding to continue writing from within this new storm, a lot of you have somehow found your way to this page. So, I thought it was time to introduce myself.
First of all, let me just say that I don’t normally have purple hair.
Secondly, I don’t like blogs (seriously). But I think I’m supposed to write a blog (seriously??).
Finally, if you join me on this journey, you’ll learn the beautifully bizarre story of how I ended up having purple hair (ok, it was just temporary but you still want to know, don’t ya?)
I have been pondering two different things recently. One is that I wrote my first blog post one year ago. When the thought “start a blog” first popped into my head, my response was, “No!”
As I wrestled with that idea, I didn’t believe I’d attract many followers but at the same time thought maybe something I shared about my life would resonate with someone else. Probably just one “someone else.” So, I resolved to write for the one person who may read what I would write each week.
I have also been thinking about purple hair – because I currently have purple hair. More accurately, I have 3-4 inches of purple tips as a result of my incredible friends donating to a Facebook fundraiser for the Epilepsy Foundation of Minnesota. If donations totaled $1000, I would semi-permanently dye the ends of my hair purple. They raised $1101!
I have since actually dyed my hair three times. The first showed up only as a light burgundy color and didn’t really stand out enough to embarrass me, which, of course, is part of the reason people donated in the first place! The second time (with bleach) turned my hair purple but faded to pink in less than two weeks, and I had promised to sport purple the whole month of November. I took a picture after dyeing my hair for the third time to assure everyone that I was, in fact, staying a very obvious purple for the whole month (which is Epilepsy Awareness Month by the way).
So, I had these two separate thoughts floating around in my head until one day when they became one thought. I scrolled past this photo in my camera roll last week and realized she is the one person I’ve been writing for this last year. She’s the one person who has read everything I’ve posted, to the website, to Facebook, and to Instagram.
As you can see, I decided to not write a blog post this week. Actually, for the last few weeks, I’ve decided to not write a new post. And then I listen and see if that’s really what I’m supposed to do or if it’s just what I want to do (or not do rather…). And then the timing of an old journal entry or Facebook post is too timely and that turns into a blog post.
I have a necklace that I usually wear under my clothes so I feel it on my chest and remember it throughout the day. It has a round, silver disk on a long chain with song lyrics engraved on it written in my handwriting. It’s a private little message between God and me. But somedays – somedays I wear it on the outside of my shirt to put the devil on notice.
Have you ever been so lost in the fear that you couldn’t think straight? It sounds cliché but I’ve actually been there. Unable to breathe. Not knowing what the next step should be or even how to start figuring it out. Who or what do you reach out to in the storm? What are the lifelines you use to catch your breath?
I am afraid of looking weak and whiny. I’m afraid of telling you just how much I’ve cried over the last six years. I’m afraid you’ll read my very raw, open self and think, “Ewww.” Ok, you maybe won’t think that because you’re too nice…but someone else might.
