epilepsy

Monday Reflections: Epilepsy Visualized

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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.

Dear Epilepsy…

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It’s been two years since we had our last fight. Although it wasn’t one of the most violent ones, it also wasn’t the least. The fear you swept right through me that night I’ll never forget.

Panic. Terror. Dread. Those are the things I remember the most. You were very determined to ruin the tranquility I’d gained in your absence. 

Long before I heard my Apple Watch alert me that my heart rate had spiked, I knew you were here. You’re almost like a sixth sense now, and I know when you want to take the driver’s seat. 

Your aura always feels like a scene from a nightmare. You want to run, but your legs won’t move. It’s slow and fast. It’s still and moving. It’s a painful slow motion picture and time-lapse all rolled into one.

Luckily, the meds made sure you didn’t stay for long, and I was able to regain some composure. 

Two years have come and gone, and you’ve kept quiet. It feels strange and surreal. And it feels SO good! 

These past twelve years have been a crazy ride, and I’m sure there will be many more bumps along the road. But I’ve learned so much in this journey, and I’m ready to take anything head on. So buckle up and stay in the backseat my annoying friend because the driver’s seat is all mine!

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

I’ve climbed and soared. I’ve stumbled and fallen. I’ve gained hope. I’ve lost some. I’ve smiled. I’ve cried. I’ve gone through all the motions, but I’ve never given up. Because of persevering through that struggle, I am finally two years seizure free!

The happiness this milestone brings is overwhelming, and I can’t wait for the next one to get here! As I move forward, I know what comes next will not be easy. Let’s face it. When will it ever be?

But whatever comes my way, I know I can handle it because I have all of you. Your support has fueled me and kept me going. These two years were a success because of you. THANK YOU!

Monday Reflections: One Moment

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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.

 

November is National Epilepsy Awareness Month!

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Epilepsy isn’t biased. It doesn’t care about who you are or where you’re from. It can affect anyone with a brain.

1 in 10 people will have at least one seizure in their lifetime, and 1 in 26 will develop epilepsy.

As one of those 1 in 26, I ask for your help to spread awareness about this neurological disorder. Be part of #StaySafeSide, a nationwide effort highlighting the importance of recognizing a seizure and promoting seizure first aid.

Seizure first aid isn’t brain surgery. It’s as simple as – Stay, Safe, Side.

See the Epilepsy Foundation’s Seizure First Aid poster below to learn how to be seizure smart.

(Click on the image to download a copy.)

Dare to be seizure smart! Educate others about seizure preparedness and encourage others to take action. Together we can make a difference!

 

Monday Reflections: Lingering Monster

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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.

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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

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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!

 

 

Let’s Walk to END EPILEPSY!

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I’m participating in the Walk to END EPILEPSY, and I want to invite you to support me in helping raise funds for the Epilepsy Foundation of Texas.

As a person living with epilepsy, this is a cause that is close to my heart.

Epilepsy is the third most common neurological condition, and it affects more than three million people in the US alone.

There is a lot of stigma surrounding this disorder. By increasing awareness, we can spread important and accurate information about epilepsy. We can educate others about seizure first aid and end the stigma surrounding epilepsy.

The Epilepsy Foundation provides many needed services to the over 15,000 people living with epilepsy and seizure disorders in north and east Texas.

Join me in helping raise funds for an important organization that creates life changing opportunities for people living with seizure disorders.

Please consider making a donation on my fundraising page at the link below. No donation is too big or small.

Walk to END EPILEPSY

If you are around the area and would like to take a walk with me,  join my team Game of Temporal Lobe.

The Epilepsy Foundation Texas – Houston/Dallas/Fort Worth is a recognized 501c3 non-profit organization and all donations are completely tax deductible.

Thanks!
Vero

Seizure free for one year!!!

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Memories of the past three years float around in my mind. As I sort through the trying and sunny times, it’s almost impossible to put all my feelings into words.

There is heartache for the loved ones I’ve lost along the way. There is fright and frustration for the storms I’ve had to face.

There is embarrassment for all the silly things I’ve managed to do. There is love and gratitude for the kindness and encouragement my family and friends have given me.

There is a sense of accomplishment for sticking it through. And there are fuzzy, warm motions stirring inside today, and I can’t help but smile.

It’s hard to believe that 365 days have come and gone, but the day is finally here!

Today, there is a purple sunrise, and it simply feels like a dream.

I’m one year seizure free!

Two years…

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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.