Because You Can

I push my dark curls back with the same grey elastic headband I wore last night and the one before. Not yet long enough for a ponytail, my hair needs some other form of constraint to keep it free of the soapy suds that wash away the layers of the day. I look at myself in the mirror of the well-lit bathroom, towel-drying my face and wiping off mascara residue from under my eyes. Short feathery wisps of down float above my forehead, too short and delicate to be captured. I remember being young and my mom gently brushing them with her fingers, tracing the different directions they grew. Every time I find my reflection, I see how much we look alike: same olive skin, same dark eyes, same slightly crooked face, same love of our family.

Tonight we all gathered, my mom and her four sisters, me and my younger sister, my dad, my aunts' spouses, childhood friends whose own children have long since left childhood; new friends, old friends, work friends, family friends, life friends. We all gathered in the same dimly-lit back room of the restaurant where my aunt was married four years ago. Tonight was again in celebration: a birthday. Her sixty first birthday. No, it's not a multiple of ten, no particular anniversary or precious metal, but the most special birthday so far. Without a cane, she seemed to glide and float across the room with a smile that spread from ear to ear as she greeted and was greeted by every glowing guest.

In time we joined together in a joyful chorus of Happy Birthday and when she stood to give a short speech, I soaked up every word I could. Be grateful for every morning that you wake up. Choose to live. Choose to fight. Face life head on, don't watch it pass you by as you wait to die a little more each day. Thank God, thank the earth, thank the people who love you, thank yourself for the world around you! Move your body because you can. Live every single day because you can. Above all, never forget how lucky and blessed you are.

Seize The Tweetosphere!

Tweets: one hundred and forty characters to tell the world what you're thinking. It gives a numerical value to, "So much to say and so little time". Well, technically it's space, not time, but if I think hard enough, I could probably figure something out with a space-time continuum. I really don't actually know what that means, though, which could cause a problem...

Anyway, for Purple Day, we're Seizing The Internet!! Tonight we start seizing the tweetosphere. A hundred and forty character limit makes getting across a point tricky. To help, I've put together some tweet-sized sound bites for you here. Don't forget to use the hashtag #SeizeTheInternet and feel free to spread the love by tagging your other favorite epilepsy bloggers and tweeters :) Check out Living Well With Epilepsy's Directory for more of us!

(Stats courtesy of Talk About It.org)

50 MILLION people around the world live with #epilepsy. #SeizeTheInternet!

If someone is having a #seizure, DO NOT restrain them! #SeizeTheInternet!

Call 911 if it's someone's first #seizure or if it lasts more than 5 minutes - an ambulance is expensive #SeizeTheInternet!

#Epilepsy is NOT contagious! Who came up with that anyway? #SeizeTheInternet!

Nearly 3 million people in the US have #epilepsy. #SeizeTheInternet!

ONE-THIRD of people with #epilepsy live with uncontrollable seizures because no available treatment works for them. #SeizeTheInternet!

BETWEEN 4 AND 10 OUT OF 1,000 people on earth live with active seizures at any one time. #Epilepsy #SeizeTheInternet!

A #seizure is a jolt of electricity through the brain, kind of like a bolt of lightening. #epilepsy #SeizeTheInternet!

For 6 OUT OF 10 people living with #epilepsy, the cause of their #seizures is unknown. #SeizeTheInternet!

50,000 people die from #epilepsy-related causes in the United States every year. #SeizeTheInternet! @SUDEPAware

If someone is having a #seizure, DON'T put anything in their mouth! It's not possible to swallow your tongue. I promise. #SeizeTheInternet!

Seize The Internet for Purple Day!

It's rapidly approaching my new bedtime of 10:15pm, and I'm chastising myself for not writing earlier, but I've spent the last couple hours downloading apps onto my new iPhone! I've finally given into peer pressure and become one of the masses. I'm okay with that, though, especially since it's shaping up to be a great phone and is happily accommodating all of my requests for social media apps. Why must I have these, you ask? Because Purple Day is coming up! Purple Day is March 26th - Monday - and is a whole day set aside to raise awareness about epilepsy! Pretty neat, huh?

This year my goal is to Seize the Internet, but, like most endeavors, it's not only bigger with help, it's more fun. In admiration of what purple stands for, take pictures all week of anything purple you see and email to me here or tweet it to me, @lvngnbrainstorm, so I can post it on my Seize The Internet wall on Pinterest! When I say anything purple, I mean EVERYTHING! I want to see pictures of purple gum on the sidewalk, purple tongues from Now And Laters, whatever you can find!

Let's Seize the blogosphere, seize the tweetosphere, seize the ... Facebook-o-sphere?? Absolutely! Seize The Internet with me and show the world what we can do when we work together to spread epilepsy awareness!

ps- don't forget to use the hashtag #SeizeTheInternet!

Be sure to check out Living Well With Epilepsy, My Life As Mandy... With Epilepsy, Kat's Cafe and your local Epilepsy Foundation chapter for more ideas on how to celebrate Purple Day!

Tides

I reached for the alarm on the new purple cell phone that sat on my nightstand, knowing that I'd already used my allotted one snooze for the day. I slid my finger across the screen, silencing it as I sat up and slowly, ungracefully, swung my legs over the edge of the bed. It's been exactly fourteen months since my first surgery, but as my hand lifted to cover the throbbing on the left side of my skull, just above my ear, not so deeply buried under its scar, I remembered that fourteen months really isn't that long.

I became more aware of the extent of the pain with each step toward the bathroom, my left hand holding its head in place, my right rubbing at my tired eyes. The light in the hallway, brighter than I remembered, gave way to a pleasant darkness in the unlit bathroom, which I held onto as I brushed my teeth, my thickly shadowed reflection barely visible in the mirror. Shaving my legs in the dark seemed inadvisable, so I winced as I begrudgingly flipped the switch on the pale green wall before turning on the water.

The Advil I'd taken upon awakening finally started to kick in mid-shower, but even walking into work, I felt the pain with every footfall. I tried not to let it show in my face as I braced my body for each wave. A voice inside my head whispered that when I didn't have a job, I could have stayed in bed and tried to sleep through it. I only let myself long for that time for a second before issuing what I don't think will be the last pep talk: Erica, listen. You can do this. It really doesn't hurt that much. You already took Advil, so whatever you're feeling is not real. You're making it up. Stop making things up and stop feeling sorry for yourself. You don't have time for that. Game face. I wasn't making up the pain, but telling myself it wasn't real somehow helped... I think... At least I was able to continue on productively with my day. Two more six hour rounds of Advil and I'm feeling pretty good. The headache lingers, but it comes and goes like the tide, calling my attention to my past, reminding me who I am and what I can do, before releasing me to the present.

Working Girl

I rub at my tired eyes, checking the corners for crusties or eye boogers. It's almost 10 and I can finally succumb to the yawns that have followed me all afternoon. I'm beginning to understand that I'm not on a holiday from my largely solitary days, but rather have started a new chapter, one that promises to be long and fulfilling. I can't believe that it was only three days ago that I walked into Target Plaza South to pick up my temporary badge and file through security to the Business Analyst training room. I have a job. A real job. A good job. A job I already like. The months and months I spent writing and healing were amazing, but eventually I began to feel better and my calm turned into restlessness into guilt over not being productive in the way I wanted. Now I am, every day forward from this past Monday. I keep thinking to myself, oh, I'll do that tomorrow at home, but I don't have full days at home anymore. At least not during the week. I'm understanding that I need to remember how to be productive with my nights, fitting in a workout, dinner, some tv, Skyping with John, dishes and life maintenance before bedtime at ten pm. I'm learning. I'm tired, I feel a little behind with life, but I'm happy.

Never Thought The Day Would Come

A glass of water sat on a ceramic coaster on the nightstand in my old room. I reached for the dark yellow bottle on the dresser next to it, turning the white cap emblazoned with the Walgreen's logo and tipping one oval pill into my palm. One pill. Not two, but one. A smile played on my lips as I thought to myself, it's really happening.

That was two nights ago. Earlier in the day, I sat in one of the two chairs opposite a large desk from my neurologist. We talked about me and John moving back to Minneapolis a few days before, my new job as a Business Analyst at Target that I start on Monday, the headaches I still get, though they're becoming less frequent, how much my hair has grown back over the past year, the fact that I'm still seizure-free. I held my breath and crossed my fingers as I asked the question I'd come for: "Dr. So said that if I made it a year without having a seizure, I could wean off of my Vimpat. Do you think I can start that?"

She paused a moment, a thoughtful look on her face as it searched my medical records on her computer screen for any reason I shouldn't. "Okay."

Relief, joy, disbelief flooded me all at once and I couldn't help the smile on my face as I said, "I honestly never in my life thought this day would come."

I won't be completely off of the drug for a month, but every day I get closer, I have more and more energy, the way I did seven months ago when I got off of my Lyrica, but this time it's even more noticeable. I'm still on Lamictal XR every night and probably will be for the rest of my life, but I'm fine with that. I always figured that liver failure was what would eventually take me one day, but now I really feel I can let that go. I'm gonna be okay.