Two years…

It’s been two years since I last saw my neurosurgeon. Two VERY long years.

After my last visit, my doctor had me make my follow-up and MRI appointments in two years because everything was going according to plan. I was off my AEDs and had been seizure free for three years. He just wanted to make sure the dark spot in my MRI scan wasn’t anything to worry about.

Since the last time I saw him, I went from being three years seizure free to having frequent convulsive seizures. Epilepsy had woken up just like the white walkers did in Game of Thrones. The monster had decided it was time to rule again.

The ruling part never happened. I wasn’t going to give up without a fight. I got back on my meds, started figuring out my new seizure triggers and changed my routine to try to avoid them.

The first of the two years was the worst. I spent a lot of time at the neurology clinic. I got scrapes and bruises from my falls. I was exhausted and met more paramedics than I ever wanted to. I scared a lot folks and had to explain to them that I wasn’t crazy, although my husband and friends will tell you otherwise. 😉

Those two years came and went, and it was time for my MRI and to see my neurosurgeon again. For me, the worst part of getting seizures again isn’t just dealing with the entire ordeal. It’s having to tell those who’ve supported me along the way that the fight they thought was over isn’t. The sadness in their eyes hurts the most because I don’t want to see those amazing, wonderful people blue.

To them I say, I’m doing alright! My recent MRI shows no abnormalities. I’m close to re-reaching my one year milestone. Yes, the fight isn’t over, but I’m going to be fine. I still have a lot to do. I need to show the world that even people with holes in their head can do anything they set their mind to.

 

I have a hole in my head. What’s your excuse?

MRI Scan

There’s a hole in my head.
There’s a hollow place in my temporal lobe.
A faulty memory, after surgery was a nuisance.
Yet, I find myself three years later a better Einstein.

There’s less brain matter in my head.
And there’s more space for my cerebrum to wiggle.
But I find myself with more intellect than some around me.

There are certain people with no hole in their heads.
Their brain matter at 100% capacity.
Yet, I find them no closer than having the intelligence of a simpleton.

Did brain surgery leave me smarter, or did it show me how to tell the dumb ones from the smart ones?

Monday Reflections: Before and After

My life has been split in two.

There is the BS period, and I’m not talking about bull s**t. BS is the “Before Surgery” period, and AS is the “After Surgery” period.

BS didn’t begin as a child, but rather at the moment I was diagnosed with epilepsy. During this time, I came to accept what was ahead of me and do my best to get better. Of course, this didn’t happen until after all the angry fits and waterfalls. It was in this phase I learned life doesn’t have to end with a diagnosis. The world keeps on turning. The sun continues to shine. I just needed to breathe and continue on.

AS began on Monday, December 09, 2013, the day I underwent brain surgery.

This period has been just as hard. Feeling weak and useless after the operation was trying. Not being able to do things on my own was discouraging, but I made it. I’ve recovered, and I’m seizure free! I’m ready to take the world head on!

Before Surgery and After Surgery is how my life is explained these days, and it’s all right. I wouldn’t want it any other way.

Epilepsy has been a challenge, but it’s taught me one valuable thing. When things are difficult, and I feel I can’t go on, I can prove myself wrong. I can prove to myself how strong I can truly be. Today I reflect on that.

Epilepsy Defeated

Brain-Aversary

The left and the right brain, they didn’t much agree.
I had to tell the doctor. It was time for him to intervene.

The journey was not pleasant, but neither was it bad.
I found strength in my weakness.
I found courage I thought I’d never have.

I’m grateful for all I’ve been through,
For the love and support I’ve had along the way.

I’m not ashamed, but proud to wear my scar.
It reminds me I’m stronger than epilepsy.

 One year ago today, I let the doctor poke at my brain. I guess what he did kind of worked because I’ve been seizure free ever since.

To others out there just like me, I want to wish you a Happy Brainaversary!

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.

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