A strangers kindness

Since last December, I’ve been learning to deal with epilepsy all over again. This new version of epilepsy has come in the form of grand mal seizures and not my previous complex partial seizures. My body doesn’t like the physical exhaustion this new type leaves, but it beats having them sparingly versus small handfuls of them almost every other day like before.

Today was going to be a fun day. I was not just going to run errands, but I was going to go shopping at all my favorite geeky stores. Epilepsy had a different plan in mind.

As I made my way through the wonderful nerdy aisles at Game Stop, the feeling of dread aura came over me. Knowing I had little time before the seizure would begin, I quickly alerted my husband and found a corner to sit in.

As usual, I don’t remember much of the event, but I remember the kindness of a nameless stranger.

While some were busy being nosy by staring at my convulsing self, a particular wonderful woman offered my husband a helping hand. She helped him turn me on my side, brought him napkins to help clean the spit and blood coming out my mouth. She even went to the Whole Foods next door and bought me some cold water so I could hydrate after the ordeal.

When the paramedics arrived, she quietly left so she wouldn’t get in the way and didn’t even wait to receive a thank you. To this nameless stranger, I offer you the following words as a form of my gratitude.

In a world of darkness, I know there is still hope.

In a place where there is much cruelty, I know kindness still exists.

These things I know because I saw them today in the considerate actions of a stranger.

Without knowing who I was, you showed all the concern friends give to one another.

Nameless stranger and now my forever angel, thank you for your help.

A National Walk for Epilepsy Thank You

This past weekend was the National Walk for Epilepsy in Washington, D.C., and it was a great one!

It’s wonderful being surrounded by people who fight for a better tomorrow for those living with epilepsy. Being an epilepsy survivor, this event means so much to me.

This eFight is a difficult one, and, at times, it seems impossible to go on. But, this doesn’t have to be the case.  In this walk, we help make each other stronger, as we work toward the same goal.

We walk to find a cure for epilepsy!

I am so thankful for all the donors and my teammates who supported me along the way. The walk was a success because of them!

To everyone who participated in the National Walk for Epilepsy, I want to thank you from the bottom of my purple heart!

Unite and Wear Purple

Go Purple Epilepsy Logo

For the past couple of months, I’ve been preparing myself for the National Walk for Epilepsy in DC. As I made my daily walk the other day, I realized the amount of progress I’ve made since surgery.

Fifteen months ago, brain surgery had left my body weak. It was impossible to make it from my bedroom to the living room alone. After a couple of months, although with difficulty,  I was finally able to walk from my doorstep to the mailbox. Today, I can walk, jog or run for as long as my not so athletic self can handle.

I’m proud of my accomplishments, but I can’t say it was easy getting there. Along my path to recovery, there have been many hurdles. I’ve felt like giving up more times than I can count, but I didn’t.

If there is anything epilepsy has taught me it’s this:

When you think you’ve taken one step forward just to take two steps back, don’t fret because it isn’t over. Life is a sea filled with mild and dangerous tides. Sometimes we need to be pulled back to come back so much stronger. The rough patch will pass, as long as we keep treading on. When all is over, we’ll realize the hurdles are nothing more than a nuisance because we are capable of walking through it all.

Today is Purple Day – Epilepsy Awareness Day!

It is a day I look forward to each year because it is a symbol that epilepsy doesn’t have to be a lonesome battle. When we come together on Purple Day, we take a step forward in finding an end to epilepsy.

So let’s talk about our seizing struggles and what we’ve done to hold strong. Educating others about epilepsy is important. We want others to be there for us just as much as they want to be there for us too. By raising awareness about this neurological disorder, we can do that.

This fight cannot be won alone, but I know we can all win. Let’s paint the world purple and spread awareness about epilepsy all around the world! 

Here are some links to help get you started.

Purple Day: http://www.purpleday.org/aboutepilepsy
Epilepsy Foundation: http://www.epilepsy.com
National Walk for Epilepsy: http://walkforepilepsy.org

 

The Monster Within (Part 1)

I had been running like a predator after a prey for far too long. More sunsets had taken place than I could count, and I could barely recognize myself. I didn’t know who I was. I didn’t know where I belonged. I just knew I was tired of going nowhere. It was time to break the shackles I had gotten myself into. I needed to get out of this abyss of angry solitude.

This is the untold tale of epilepsy and how I survived it.

Continue reading

Monday Reflections: Six Months Seizure Free

 

To: My very own Hidden Disorder

For the longest time, you controlled me.
You held on tightly and wouldn’t let me be.

Six months ago today, I made a choice.
And I now no longer hear your voice.

Our friendly fights are over.
There is now a sense of closure.

My friendly enemy, it’s time to say goodbye
I’m going to shout and fly high.

This is what it looks like to be six-months seizure free!

Vero

My Monday reflection: I have a hole in my head, but it’s all right. It’s been filled with seizure free freedom that I’ve longed for and now have.

A Distant and Almost Sweet Memory

The end of normalcy and at the beginning of what felt like the end is where this entry starts. It was two-months after my diagnoses. I was confused and angry. I didn’t know what to do or what to expect. I just knew that life wouldn’t be the same.

Looking back at my 20-year-old self, I wish I could tell her things would be all right. I’d let her know that the road would be difficult, but it’s not anything she couldn’t overcome. Have patience and realize one day this would be a distant, almost sweet memory of what made you strong and shaped who you are today. Continue reading

The e-filmmaker Auras

It’s Friday once again! I am really looking forward to the weekend. It’s been a busy week and I am in need of some good rest. It’s been 116 days after my surgery.  You’d think my energy would be back to normal, but it isn’t quite there yet. My headaches are increasing, but it isn’t anything a good night sleep won’t fix.

Flashback – July 18, 2012

I can handle your average headache, but there are others a little too difficult to control, much less describe. Auras followed me everywhere I’d go. Little warning signs before a seizure are always good, but sometimes that good just doesn’t make you feel all right. This is the best description I had to offer in 2012 and its the best one I believe I can ever offer.

***********************************************************

Abrupt motion followed by static motion surrounds me. A blurred and distorted image, it’s something I cannot control. Focus on and off. Focus off and on. Eyes are not set on automatic, but manual. I’m like a amateur camera operator. Four years of technical film education appear to be useless, and I’m just left with the studies portion. It’s like a Dutch angle image with nonlinear cuts. Color correction has yet to take place. It’s a majestic yellow, warm, sunny day. Filtered with warm, opaque colors; it’s mosaic at best. Confusion sets in with a clarity indescribable. The most miniscule things come into deep focus. A small crack in the pavement and an almost invisible crease become magnified into too much perfection. With great insight, come powerful electrical waves. The heart begins to beat a little faster. The head seems to expand and cause pressure. The great image becomes more of an unpleasant view that hurts much like a paper cut. It’s invisible and small, but it causes more pain than you’d think possible. Confusion distorts image. A sense of clouded emotion takes form. In and out the image is displayed, until nothing is left. Yet the picture never faded, but was forgotten. Consciousness sets in, but what once was clear seems distant, just like faded memories that will soon be erased. Exhaustion takes its course. Eyes closed with no recollection of what really happened and what really didn’t. When I awaken, it will seem to be more like a dream or a nightmare, depending on how you decide to look at it.

It continues. The constant in and out trances. I try to force myself out of them, but they are too strong sometimes. I don’t think there is anything I can do about them. Fighting them I must. They will not overcome me. The journey will be long. Many times I know I will fail, but giving up I will not.

The Bright Side of a Broken Phone

broken phone

It all starts with a broken phone. I knew it was bound to happen. I just didn’t know how soon or later that was going to be. Like most, my phone is my baby. I’m completely lost without it and freak out when its been abandoned at home. I should have been a good mother to it, but I guess it’s too late for that. :: insert tears :: Okay that’s enough melodrama for right now!

If you’ve read my blog before, you’d know that I have epilepsy.  I underwent a temporal lobe resection to get rid of my seizures. Before surgery, life was complicated, in the sense that I felt restrained, and I didn’t know what to do. I learned to cope with it, but I didn’t know how others would. Pushing everyone away felt like the right thing to do. There is no need for that anymore.

You might be wondering what this has to do with a broken phone so here it goes.

Breaking your phone always sucks! It is one of the most annoying things that could possibly happen. Getting a new phone is a nuisance. Considering how expensive they are, your pockets are usually left empty.

Yesterday, I broke my phone so I went in for a repair. Since it was late and stores were closing, I went to the nearest one. It’s just my luck that they don’t do repairs at that store. I can go a few hours without my phone, but a whole day? This is simply impossible. My phone has been damaged before. Honestly, I simply needed a new one. A repair might not have worked to begin with. I had no choice, but to leave the text and Wi-Fi world behind or buy a new one. Purchasing a new one it was!

Since surgery, I’ve found that I have a short attention span and have difficulty remembering things. My passwords included. Picking out my phone was easy. Since I had already backed up my phone, the salesman was happy his job would be a little easier. Boy was he wrong! It turns out that you need your password to reset your phone. To reset your phone, you will receive an email that allows you to complete the request. Yes, you guessed correctly! I forgot that one too.

The salesman was very patient and we eventually got it all figured out. Throughout the entire transaction, I kept apologizing, but insisted I had a legitimate excuse for forgetting, and then I said it. I told him I had brain surgery. The guy didn’t know whether he should laugh or not. Our conversation follows.

Seriously! I had brain surgery 11 weeks ago.

Oh, you did? Did you have a tumor or something?

I have epilepsy and I had surgery to stop my seizures.

He looks at me with a ‘should I ask more or look away’ expression.

It might not have been the most interesting conversation, but it was a conversation nonetheless.  Although I know things are not yet in place, I feel more like myself everyday. Eleven weeks ago, this conversation would never have taken place. I would be embarrassed and try really hard to get out of the store as fast as I could.

A broken phone sucks, but what you learn from it is kind of cool. My phone was broken just like I had been. The cost of a new one and cost of surgery were both expensive, but every penny was worth it. The bright side of a broken phone is that there is always hope a repair will fix things and starting new doesn’t have to be frightening. Things will sort themselves out. I thank my phone for yesterday. It reminded me of something I had known all along, but had forgotten.

Gamma-Radiate Me

Hulk Sketch

I left off at the beginning last time so this is sometime in between. Over the past years, I’ve undergone several tests to help prepare me for surgery. Looking back at them now, the order has become blurred. Yet, there is always something that stands out of any pile of mess. Here is mine.

Flashback – I don’t remember when 2013. Continue reading

Silent Storm: The Fight From Within

storm sketch

Most stories start at the beginning. Mine starts at the beginning of one end.  It’s before and after, upward and backward and everything else in between.

Flashback – February 2, 2009

As clouded as it was, it is a date that I will never forget. I didn’t notice the signs. I could not recollect the seizures. It’s a weather forecast foretold wrong. We have sunny skies, the weatherman says. The day rises and the sun is nowhere to be found.

It’s not until the tornado hits when we realize the enormity of it all.  For me, this was the day I was diagnosed with epilepsy and the day that changed it all. The following is how it all began. Continue reading