March 26 is Purple Day, epilepsy awareness day!
Will you Get Involved and wear your purple best so together we can help raise awareness about epilepsy worldwide?
It happened again. The silent stare and painful convulsions. My morning started with a simple cup of joe, but ended with a trip to the ER. Epilepsy, my dear old friend, sure missed me these past three years and came back to end my one month seizure free streak.
In a weird way, I’m not disappointed that it happened. It was my fault to begin with. I missed my dose the night before. I just have to get back into the routine of taking my meds on time again.
But why am I okay with it happening? I’m okay with it happening because I won’t have to celebrate my one-year anniversary on my birthday. I have a new date to celebrate and an entire new day of excuses to ask my husband for presents.
But most importantly, it made me realize how much my work family cares for me. Although many of them had never seen me seize before, they weren’t squeamish from the blood that spilled from my mouth as my teeth ground my tongue. They weren’t making faces as my body contorted on the ground. They took action! They made sure I didn’t hurt myself during my fit, and made sure I was alright, after I showcased my breakdancing moves.
I am very grateful for my work family and how they came together to work as my epilepsy team!
There are many things I can say I’m good at. There aren’t many things I can say I am great at, but there is definitely one thing I can say I am perfect at!
I’m a perfect patient! And I don’t mean the “patience is a virtue” kind of thing. I have yet to meet someone who truly has patience for every single little thing.
My body rattles. My body shakes.
The tongue is bitten. The tooth breaks.
Unconscious monster has awoken.
And I am here left broken.
Were the last three years lost?
Was surgery worth the cost?
While there is hurt in my soul,
I have not lost my goal.
There is beauty in tears,
And no reason for fears.
I have my purple support system
to guide me with their wisdom.
With them, the impossible is possible.
With them, I’m unstoppable.
My epilepsy battle might not be over, but neither are my spirits. This girl is going to kick Epilepsy’s butt again!
How did a three-year streak turn into three-days? How did the renewed independence and freedom disappear with just the change in time? These and so many more questions swirl in my mind, but will I ever find real answers to any of them? Most people never find the underlying cause of their epilepsy. I know I never did, but I at least thought I found the end to that journey.
Boy was I wrong!
I was just waiting for the clock to strike midnight so I could send my twin sister a happy birthday message, but I never saw the time change.
I awoke to confusion. Saliva spilled across my pillows and cheeks. “Vero, do you know what just happened?” my husband asked.
“What year is it? Who’s the president of the United States?” he continued asking.
I’ve heard these questions asked several times before, but these questions were only ever asked to me when I had a seizure.
“Why are you asking me this?” I asked him.
“You just had a seizure. Please answer me.”
“Don’t say that! Please don’t say that!” I screamed.
But he had to say it because it was true.
I woke up in hell’s kitchen again. Epilepsy came back full force to wish me a happy birthday this year, and I spent the better part of the morning making calls to my neurologist and dentist so we can come up with a new plan.
Am I disappointment because of all the progress I made these past three years? It would be a lie for me to say it wasn’t. Yet, as I stare at epilepsy face to face again, I’m not angry, just a little a sad. I’m not back at square one. I beat you once my strange friend, and I’m willing to do it all over again.
I wouldn’t have made it through my epilepsy journey, if it hadn’t been for all the love and support I received from my amazing family and friends. It was because of my wonderful purple support system that I was strong enough to make it out of those toughest storms.
I owe them plenty. They are all and will always be the greatest epilepsy soldiers and heroes I know!
Yet, there is a BIG thank you deserved to a man who is responsible for the “C” shaped scar on my head.
Dr. Bruce Mickey is a man with the bravery of Bruce Wayne, in order to put up with the likes of me as a patient. He is a great doctor who wears the kindest smile, just like the happiest mouse in the world. He is #MyEpilepsyHero.
Dr. Mickey is a wonderful neurosurgeon who not only left me with a cool haircut, but left me seizure free! Thank you for my seizure freedom, and thank you for your continued care!
And as promised, here is my MyEpilepsyHero shout out.
It’s hard to believe that 1,095 days of seizure freedom have passed! The time where a couple of weeks without a seizure felt like a victory is now a distant memory.
I am so happy and thankful for my family and friends who’ve helped me along the way. I can never repay them for all the love and support they have given me, but I hope this small brainaversary entry will show them how grateful I truly am.
Children have monsters living under their bed.
My hidden monster lived inside my head.
Covering myself in blankets would not help a single thing.
Although the doctors tried to put the puzzle together,
I always felt like a broken porcelain doll forever.
Hiding and crying, you were there to put me back together again.
Thank you my purple support system for giving me a listen.
Thank you for your pep talks and words of wisdom.
Thank you for all the times you made me see reason.
I know I wasn’t the most patient of girls,
especially when that monster gave me a swirl.
Even with all my fits and tantrums,
you helped me fight my phantoms.
Thank you my purple system for all that you continue to do.
It is because of you that I am whole and new!
To everyone out there with a hole inside their head, I want to wish you a Happy Brainaversary!
It’s time to paint the town purple again! November is epilepsy awareness month, and what better way to celebrate than by recognizing those who’ve made a difference in our epilepsy journey?
In honor of National Epilepsy Awareness Month, Sunovion Pharmaceuticals and actor Greg Grunberg are teaming up to recognize those that have made a positive impact and have provided support to the epilepsy community.
Starting November 1 through December 16, post a video or photo of your epilepsy hero using the hashtag #MyEpilepsyHero on Facebook or Twitter. When 500 posts have been reached, Sunovion will donate $10,000 to the Epilepsy Foundation.
I’ll be creating my own video later this month so keep an eye out for it on the blog!
So who’s your #MyEpilepsyHero?
I remember the kicking and the screaming I did so long ago.
Why me? What did I do wrong? It’s not fair! I was a repeating record.
Now, I sit here almost three years later, massaging the small dip in my skull.
I know now that I could have had it much, much worse.
An occasional strong, spiking headache is what’s left of my seizure disorder.
The empty bottles I won’t have to refill anymore lay abandoned in my night stand.
Almost a decade ago, the kiddy tantrums felt necessary, and I did get more that just bumps and bruises from those futile scenes. I learned something, too.
Instead of being angry at the entire world, I learned that my energy was put to better use in fighting my battle against epilepsy. After all, it wasn’t anyone’s fault, and throwing a fit wouldn’t solve anything.
Looking back, I know I could have had it so much worse.
I could have had over 100 seizures a day. I could have been unable to finish college and find a job.
I could have gone through those painful months of recovery just to find out surgery didn’t work.
I could have, but I didn’t. I survived.
So I sit here hoping that this electrifying storm passes by soon, but if it doesn’t that’s okay.
It’s okay because my epilepsy battle is coming to an end, and I’m going to come out so much stronger.
We live. We die.
In between, we smile.
We laugh. We cry.
We inhale. We exhale.
The circle goes on and on.