The Epilepsy Stigma & How It Makes Me A Liar

Looking back through our vacation pictures, I can’t help pause at one in particular and laugh… I’m giving Beyoncé’s photo-shopped Instagram pics a run for their money. I mean wow- look at that thigh gap. lol (Thank you opportune awkward leg placement in combination with husband’s perfect random hat positioning.) Nonetheless, nice work. And look at that glow, lovebirds kissing. And then the glass of white wine in her hand.

She looks happy.

Healthy.

That’s the problem. She wants us to fall for her sob story when obviously her world is marvelous and she’s totally lucky.

That’s the problem… With Epilepsy.

Is she happy- yes! Is that thigh gap real? Ha! No- actually just some excellent photography by my bro-in-law. lol Is that alcohol in her right hand being consumed? Yes!

But she’s still epileptic. She is.

And the night before that pic my husband and I were up until almost 3 AM dealing with small seizures and incessant twitches. He rubbing my back, whispering calming words while our son slept just feet away from us. Me tingling, twitching, jumping, spazzing while I tried to inhale and exhale in measured steps. A far cry from that girl drinking in paradise. Not the picture of bliss.

Am I extremely fortunate? Yes. One hundred percent and I recognize it all the time. And I am grateful.

Is this sort of travel my day-to-day life? No. This vacation was a gift from my parents who bought it at a Cystic Fibrosis gala and decided to treat it as a family getaway. I wasn’t going to miss it. It didn’t matter that I’m in the middle of titration. It’s simply bad timing. Was it the smartest decision I’ve ever made? Maybe, maybe not. But it was incredible and an experience I would’ve missed out on had I let Epilepsy keep me at home. Why begrudge myself this happiness and these memorable moments because of my Epilepsy? Why take this amazing opportunity away from my family?

Nicaragua was incredible. The days were incredible.

The nights were hell.

Right before we left, my doctor and I adjusted my meds once more- weaning off Lamictal, increasing the Keppra- putting me in an unavoidable situation of too little of each drug to control my Epilepsy but not in the place where my body could adjust to more just yet. Not his fault, I’d wanted to continue pushing the process forward and promised I’d be under constant supervision with my family throughout the trip.

Now I know what you’re thinking; why would you have wine then?!? Well, to answer, the twitches and insomnia were happening even without the alcohol, so I finally said screw it. Why deprive myself of a little more enjoyment if I’m going to experience the same end result? And that’s exactly why I chose this picture from our trip… Looking at it objectively, or from your point of view, I’d say everything I’ve read from that girl thus far is a crock and she reeeeeally knows how to stretch the truth for sympathy.

But I promise, it’s not.

If there’s one thing I’ve learned (especially this past year) from Epilepsy, it’s to reserve judgement. To not automatically validate assumptions. Everyone has his/her own private struggles others know nothing about. I’ve just chosen to share mine. And this is precisely why.

I don’t fit the stereotype.

I’m not in a wheelchair. I don’t suffer from another disorder or disease. I’m not on the floor constantly seizing… I’m tall, blonde (although definitely with the assistance of a hairdresser 😉), outgoing and overall… happy. I chose to write this piece because I’d shared a picture of me smiling on a beach with my family, and I felt guilty. Guilty because I know the people who follow my blog/Facebook/story would question my authenticity, question the struggle behind my words. Even though they are so very genuine and true. You see one thing and read another… and naturally, you believe what you see. I would. But here’s what I have to ask- would you rather only see the suffering? The pictures of MRIs, EEG electrodes and caps, crying while holding my pregnant belly, broken glass and bruises? Would that make me “more Epileptic?” More believable?

Again, I know we live in a society where to see is to believe…

Believe this. I don’t take pictures of those moments because I don’t want to remember them. They are the last things I want to revisit. They don’t encourage strength or bring comfort. We take pictures for all sorts of reasons and I can start now if it removes the stigma and adds validation to my story, but I’d rather continue celebrating the moments of sunshine when there can be too many clouds to count.

For 7 nights straight, I dreaded the dark, each seizure as it came, and managed only hours of sleep, but for 7 days, I got to bask in the warmth of the sunshine and my family…

When you look at my story and those of others, trust that there is always darkness and the nightmare is real, but stay with me while I bask in the sun too.

We all deserve that.

5 thoughts on “The Epilepsy Stigma & How It Makes Me A Liar

Add yours

  1. Even when you have to be in a wheelchair, having had Epilepsy as a part of your daily life doesn’t make ‘disabled ‘an easy stereotype to fit. We are all our own original people to be and it is best to continue being grateful and enjoying all that we have =)

    Liked by 1 person

  2. My husband and I once discussed video taping me in the midst of a seizure. I quickly decided against it, because I knew what it would do to my confidence and my self image if I actually saw what was happening at the time. I’m with you. I’d rather take pictures that describe the REAL me. I have epilepsy…it doesn’t have me. Continue basking in the sun :)

    Liked by 1 person

  3. You should absolutely never let yourself feel guilty for trying to live a ‘normal’ life. You deserve to be happy, you deserve those moments of normality – don’t let the epilepsy define you, you are more than just the epilepsy and for your story to be ‘genuine’ that means sharing both the struggles and the GOOD times. That’s what makes you genuine, that’s what makes you an inspiration, you have a struggle but you don’t let it overtake your happiness :)

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at WordPress.com.

Up ↑

%d bloggers like this: