Understanding Epilepsy

Epilepsy is not the moment when your brain takes control of your body, then violently tosses it back and forth. It is not the tongue biting, the absent stare, the losing bladder control, the fainting, the drooling, or the involuntary yell when the air is expelled from your lungs. THAT is the seizure. Most people with Epilepsy spend 99% of their lives in the interictal stage. (Epilepsy.com)


Interictal: the time between seizures


Having a seizure sucks. It just does. But, I am not really aware until I have had one that I actually had a seizure. So, I only deal with the aura and the postictal stage of the actual seizures. It is the interictal time, in my opinion, that is THE most difficult. Unless someone has actually spent the time to read the information or asked the person, the general population thinks that Epilepsy is the seizure. The interictal time is different for each person. This is what keeps me up at night and alters my daily life. Not the seizure.

• Fear of having a seizure-especially when I am in public


• Figuring out how I am going to go buy groceries


• The inability to keep up physically-fatigue


• The need for more sleep than most people


• Trying to hide my limitations so that no one knows I am struggling


• Extreme anxiety


• Auras-mostly when I am stressed or tired. (Numbness/tingling in my lips, visual disturbances in new environments-seeing things move that really aren't there, feeling the bed move when no one is moving, the feeling of "electrical surges "zaps" when I close my eyes, nausea, rapid heart rate, sweating, changes in my speech, the inability to think of the right word to say, short-term memory loss.)


• Taking medication every day for an unknown amount of time


• Medication that interrupts the normal sleep cycle-resulting in fatigue, anxiety, and agitation


• Managing the stress, anxiety, medication, and sleep


• Managing my own health care and treatment plan-finding the right physician is VERY difficult


• Bring awareness to those who do not understand

These are just the things I deal with on a daily basis. This does not include my actual life; work, home, child. I am thankful that I do not have to worry about having a soft floor in my house in case I fall. Or, knowing that I will never be able to drive again. Some people have brain surgery to CONTROL, not get rid of entirely, their seizures.

And, without warning-some people never wake up the next morning because they died in their sleep from SUDEP. Yes. That is a real issue. It happens. And, that is what those of us who battle this disorder are faced with every single day.

Epilepsy does not go away. The medication does not control this interictal period. My brain still has abnormal activity. The medication just controls the seizures. Knowing that family and friends really do understand this disorder means the world to me and the rest of us who deal with this. We look fine on the outside. But, we are dealing with a GIANT monster on the inside. I can still do everything I did before and be just as, or more, successful professionally. But, I do have an added stress. My employer is the best ever and I mentally give them a giant hug everyday.

I hope that understanding what Epilepsy really is, and what it is not, allows people to take a step back and think for a moment. It really is appreciated by all of us who have Epilepsy and those who advocate.

Independence Day-August 17, 2011

This weekend, the meaning of "it takes a village to raise a child" became a little more clear to me. I see my neighbors shuffling their kids, and many other area kids, to soccer practice, band practice, recitals, church, and wherever else kids go in large groups. My kid isn't to that stage yet. But, it is nice to see other people helping each other. *Insert cricket chirping sounds*

Then, there is my convoluted life. I am the telecommuting Mom of a stay-at-home toddler. (He has an in-home sitter.) So, while many people I know take their kids to a Gma's house or a daycare, I hear all the screams of joy and sadness from my office. Please keep in mind that I still cannot drive. So, the screams are quite magnified because I know I can't get away. Right now, I KNOW that I need to go to the store to get milk. I wouldn't have this thought if someone (not me) had not left an ENTIRE gallon of milk on the counter for 2 1/2 hours. How will I get there? And, like another Mommy blogger post I just read about "the village," I HATE TO ASK FOR HELP.

Yes, my seizure disorder is a burden to everyone. I get a daily reminder of the following:

1. I cannot drive ANYWHERE-this annoys people who claim to be my friends because that means they might actually have to go out of their way to do something for someone else. Therefore, I just don't get invited to things.




2. I am more tired than most people




3. My patience is limited




4. My anxiety is high




5. I have to plan EVERYTHING in advance, more than usual (grocery shopping, fun activities, Mommy time-which never happens)

There are two things that hurt the most in this situation.

1. I can't spend quality time with my boy outside of the house. He loves the park. I can't take him. He loves the beach. I can't take him. He loves the indoor bouncy house place. I can't take him. He loves a treat from Chick Fil A. I CAN'T TAKE HIM. (This also leads to Daddy not getting his much-needed Daddy time because he is babysitting us both.)




2. Friends who are "too busy" to come get me and take me someplace fun (or someplace necessary!) ,to get a pedi, a cupcake, to Target, or to a lovely restaurant to enjoy a glass of delicious red wine, so that I can feel like a normal adult. Apparently, two hours is a lifetime to most people and they cannot afford it. I will even buy the wine!

(Let me say that there have been 5 people who have helped me. 1. my neighbor and former middle school teacher. 2. a client from WORK who drove me from his business location to my hair stylist. Umm, WOW! 3. my son's nanny. 4. my friend who drove me 2 1/2 hours to another city so that I could meet with a client...and back the very same day. 5. my partner. )

My village lives in Concord, NC; Franklin, WI; Spokane, WA; Port St. Lucie, FL; Upstate NY; Richmond, VA, some beachy town that starts with a P, VA; and in my heart with the other angels in this world.