News from the pipeline: 2020 Epilepsy Community Day

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A group of pipes

Photo by Christophe Dion on Unsplash

On a screen filled with pink and purple hues, white lines resembling brain waves merged to form the profile view of a person. A sweet and lively melody accompanied the image, and I waited patiently in excitement for the 2020 Epilepsy Pipeline Community Day to begin this past Saturday morning.

Jon Scheuinman, Director of Youth Programs at the Epilepsy Foundation, welcomed attendees to the conference and explained how we’d hear about a variety of topics from people living with epilepsy, their families and healthcare providers.

With over five hours of information, there are so many topics to cover that I couldn’t possibility fit everything into one post. 

Instead, I’ll retell the story of a man who impacted me the most. I’ll refresh you on some general epilepsy information and let you know how you can get involved in the epilepsy community. In future posts, I hope to highlight more information about the other topics discussed.

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Dialogue is the best medicine so let’s talk about it!

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Photo by Amin Hasani on Unsplash

The stigma and fear surrounding seizure disorders makes talking about epilepsy difficult. Telling someone about a very private part of your life that you might not quite fully understand yourself is nerve-racking. You can never know how a person might react and worry that you’ll be seen and treated differently.

And how do you even go about bringing it up? Is there such a thing as a good conversation starter, or do you just throw it out there and hope for the best?

“By the way, I wasn’t ignoring you the other day. I have epilepsy so I was having this absence seizure. It’s the type of seizure where I’m just staring off and have a lapse in awareness.”

I’m certain you won’t get the response you’re hoping for in that scenario, but, then again, I’ve never tried it. If you do give it a try, please let me know how it goes. Continue reading →

Ending Epilepsy Starts With Us!

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Since we’ve all been confined to the inside of our homes, it might seem a little harder to learn more about and advocate for the things we are passionate about. But in this virtual world we’ve all adapted to, anything is possible!

As a big advocate for The Epilepsy Foundation, I’m excited that their 2020 Epilepsy Pipeline Community Day is going virtual. This one-day educational conference will provide valuable information about new epilepsy treatments, genetics, SUDEP and how you can get involved and take action to help END EPILEPSY.

And it doesn’t matter whether you’ve just begun your epilepsy journey or are far along the way, this conference is for everyone!

Connect with health providers, The Epilepsy Foundation and other people who are affected by epilepsy. Together we can make a difference!

Join the Epilepsy Foundation virtually on August 29, 2020 for their  Innovation and Action to END EPILEPSY Community Day!

Lab Orders: The Struggle is Real

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It’s been over a decade where being poked with needles is normal. Although I’ll admit that I still look away right as the needle pierces my skin, the process is anything but unusual.

I know this procedure is necessary, but it will always be annoying. And honestly, the hardest part of getting your blood drawn, or any other procedure for that matter, isn’t the fact that someone is making a small cut to your skin and removing what is supposed to stay inside your body.

The most difficult part comes down to paper work.

What should be a ten, maybe 15 minute, visit can sometimes turn into a one, two and eventually three hour visit.

Why does this happen? This happens because those important pieces of paper which detail the labs your doctor ordered were…

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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.

Monday Reflections: A case of the Mondays

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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.

 

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 over 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!