Monday Reflections: Epilepsy Visualized

I’m alone. I’m in company with myself. My thoughts, my consciousness are my only companions. Between these four walls, I’m isolated from the life I used to live. I’m removed from what was and what will never be.

In this place, change is nowhere to be found. Everyday is the same, constant. Each Cloned Day blurs into one. And in this oneness, I’m alone.

Light shining through and eventually fading from my window are my only reminders that Time is indeed changing. Without any consideration, Time passes and pays little to no attention to the mess that stirs deep inside.

This routine blandness is overwhelming.

Alarm. Medication. Pain. Exhaustion. Sleep. Repeat.
Alarm. Medication. Pain. Exhaustion. Sleep. Repeat.

My invisible monster is no longer hidden. In this quarantine, it is vivid now more than ever. A reflection of my inner self is visible. My already quarantined mind transitions into this new world seamlessly.

My dear friend, Epilepsy, fits in perfectly. And it takes on an almost tangible form because this quarantine is no different from the one I was already living in.

Managing life with epilepsy isn’t easy. Darkness tries to dim the light. There are more blues than yellows. You fail to see the ups and focus on the downs. The struggle is always going to be there. And in these times, it’s easy to feel alone and forgotten. We just need to remind ourselves that we are stronger than epilepsy.

Monday Reflections: A case of the Mondays

The morning struggle is very real.
Why can’t responsibilities just disappear.
Resting in my comfy bed is more than ideal.

There’s tons of paperwork on my desk.
There’s always another email to check.
This place is far from picturesque.

I wish everything could be more simple.
Could all the boring and bad just fizzle?
Can’t it all just be a bit more blissful?

They say tomorrow things will get better.
Will this good news come in the form of a newsletter?
Or is this information just another error?

Time goes so slow when all you want to do is leave.
I want to think it will soon be over, but I’m in disbelief.
Today will eventually end, but there’s always another eve.

Is it possible to return to childish freedoms with no responsibilities?
Am I right to say this dream could be a possibility?
I know the answer is NO so I guess I’ll take all accountabilities.

Adulting can sometimes be difficult, and it be would be nice to have more stay in your pj kind of days. But at one point, we all have to grow up.

 

Monday Reflections: One Moment

One moment is all it takes for your life to change.
One moment is all it takes for your heart to break.

In one moment, your mind painfully takes over.
In one moment, your body seizes and loses control.

Overtime, you’ll come to feel lonely and defeated.
Overtime, you’ll regain some normalcy and hope.

And then you’re shattered once again.
And the journey seems far from over.

One moment erases all your progress.
One moment hurts and makes you cry.

In one moment, you’ve gone from whole to broken.
In one moment, you’ve lost what you worked hard to gain.

Overtime, you’ll feel even more alone and beaten.
Overtime, you’ll slowly regain some confidence and joy.

And seasons will never stop turning.
And there will be fewer ups than downs.

Wherever you are, you don’t have to let that one moment define you.
Whatever path you’re on, know someone else is along the same trail.

There is a new tomorrow so let’s travel hand in hand.
The journey is always easier when there is more than just one.

 

Monday Reflections: Lingering Monster

A fun-filled night out with friends.
A few good smiles and laughs.

Some heartbreaking news.
Some sorrow-filled tears.

Whatever the reason.
Whatever the cause.

The memories still haunt.
The monster still lingers.

———————————————————————————————————————————

I’ve been seizure free for 15 months now. It’s a length of time that I thought I would never see again, but I finally did! As the distance of when my last seizure occurred increases, you’d think the fear would have slowly faded away by now. This is not the case.

There is no certainty that the monster will never strike again. There isn’t a lifetime guarantee, and there is a lot of fine print to read.

The decisions I make everyday are not made lightly. If I want to stay up late and have fun with my friends, I need to carefully consider the consequences and take steps to minimize them.

When things become overwhelming and the heartache is very strong, I need to remind myself to focus, cope, cry and move on.

Whether the moment is created by extreme happiness or sad misfortune, the monster can still be triggered. That cloud of fear won’t ever be gone, but I need to step back and just breathe.

Neither of us chose this, but neither of us need to go through this alone. One can’t always be strong, and I’ve stumbled a lot more times than I’ve let on. But I’ve found a place where I can listen and be heard, and you should find yours, too.

Finding your place can make a world of difference, and today I reflect on that.

Epilepsy Foundation of Texas: Support Groups

To my Game of Temporal Lobe Fam

Epilepsy is much like the weather. It’s unpredictable and always changing. A sunny, 85 degree morning can quickly turn into a 58 degree with scattered thunderstorms afternoon.

With epilepsy, you can never predict what will happen next. You prepare for a picnic. Lightning strikes, and you have to watch the latest documentary on Netflix.

The weather is very unfavorable when we really don’t need it to. But through sunshine and rain, each of you have been right beside me.

Whether you were there at the beginning or met me along the way, I want to thank you for supporting me.

Thanks for putting up with my nonsense. Thanks for listening to my randomness and laughing, even when my jokes weren’t funny.

You gals and guys are the best! It’s because of you that my Walk to END Epilepsy this past weekend was such a success.

From the bottom of my purple heart, thank you, my ever-growing epilepsy fam!

 

 

Monday Reflections: One in twenty-six

Twenty-six people living ordinary lives.
Some learning to walk for the very first time.
Others with wrinkles around their eyes.
All filled with dreams waiting to be realized.

Then, one of those twenty-six is caught off guard.
Their greens turned red. Their ups turned upside down.
Their life taken away by a silent, electrical terrorist.

One in twenty-six people will hear three life changing words.

You have epilepsy.

I’m the one in 26.

I will always be tired.
I will always have a foggy memory.
I will always be a tiny bit moody.
I will always wonder why.

But I will never give up.
I will fight for the next one in twenty-six.
I will be there to offer a helping hand.

 

Living with epilepsy isn’t easy, but it hasn’t been all bad. I’ve learned how strong I can truly be, and how I can make a difference. This past month, I was able to offer some advice to a girl who had just been diagnosed. Being able to help her make sense of everything and guide her through this difficult time has made every painful moment worthwhile. If I had decided not to get back up all those times I thought I couldn’t, I wouldn’t be able to offer her solace today. Sticking it out is difficult, but never impossible. Today I reflect on that. 

Monday Reflections: Monday Blues

I hold my breath and close my eyes hoping the pain will come and go. I try to go on as if it was just another day. There is no denying that the sunset has left and the sunrise has followed. It is another day, but it’s another day without you here. When I read the text message last night, disbelief is all I could feel. I didn’t cry. I didn’t get angry or ask why. I replied to my sister saying to let me know when the funeral arrangements would take place. I said goodnight and went to bed.

Today, I sit at my desk trying to hold back the tears. It’s not like I didn’t see it coming. You weren’t doing well, and the doctors said it would be a matter of days, but I wish they hadn’t been right.

I think about the last time I saw you and how now I never will. You grew up with my family. You were one of us kids. You were my brother’s best friend and a big brother to my sister and I. You made us laugh and helped us beat up our brother because he was too big. You were there to pick us up when we needed a ride from school. I still remember the white mustang waiting for us outside of school. Out of that small, two door car, two big, bald guys would get off to let us in the back seat. It was hilarious to see you both get out of such a small car.

As we grew up, you were there for all the milestones. My sweet fifteen, high school graduation, college graduation and wedding. Even through the difficult times, when my grandparents and great-aunt passed away, you never failed to pay your respects and give us a warm embrace.

Life is funny and has a way of bringing the smallest memory back to light. Each of those memories will make me laugh because of all the dumb things you and my brother would say. Those memories will also make me cry because your life was cut way too short, and we won’t be able to make new ones.

I’m not sure why things happen the way they do, but I do know you were a wonderful person and a great friend. Others might have thought you were a rough, tough guy, but those who knew you well, will remember the big teddy bear inside.