HOPE.

Over the last year I have begun to manage my seizures, they are getting less frequent and I think I can even detect when some are about to happen. Instead of weekly seizures (usually an average of 2-3 cluster seizures per day) I have gone a week or two without a seizure at all. As a matter of fact, in the month of July I only had 2 seizures all month long! How has this happened?

Really, I'm not sure except that I'm taking some natural oils, doing yoga daily, light workouts 2 times a week and eating better (drinking lots and lots of water-I've always taken my medication like clock-work). The most amazing thing about this is that we've had a really hard spring and summer--we finished building our home AND moved into it while keeping a business going. In addition, we picked up to start working  a second business that we hadn't really put much time into  but were a part of for over 16 years and allowed it to coast along by itself. Added to this huge transition time my middle child (my wonderful, most helpful child around the house), Kennedy, my sweet daughter went away to college too. Leaving only my youngest son, my husband and I. That has been quite an adjustment for all of us! Having only one child is very different, to 'lose' two children in two years has been hard for us...but that's another post.

My seizures began to pick back up again last month and continued on into this month. The difference is that I haven't been taking the oral natural oils like I had been (Yes, clearly there is a direct correlation that I'm getting back on track with)....what the decrease and then increase brought to the surface are all of the little things that Epilepsy has stolen from me.

In no particular order of importance.

1. Owing a car.
2. Driving period.
3. Privacy-I don't do anything by myself. At all. Ever.
4. Working out with high intensity.
5. Balance-yes, I'm doing yoga but not like I once could. My balance, or lack of is very evident now.
6. Strength in my body.
7. Fireworks.
8. High heels, sparkly clothes and dresses (I could wear those but flashing people and plucking out an     eye isn't my idea of fun).
9. Walking alone.
10. Large crowds...this is what I'm going to focus on for the rest of this entry.


Generally I try to stay upbeat and positive with my life. I have SO MANY BLESSINGS IN MY LIFE why should I focus on the negative?  Why do I care about what I don't have?  Why should I focus on what I don't get to do? Last month I had to stay home while my oldest son and husband went to Dallas for a huge 'Leadership Success School' for a business that we had been a part of for over 16 years but I hadn't been to since I began having seizures in 2007. I posted on a social media site that I was struggling with being left behind, I had been feeling great, my seizures were down, we knew what my triggers were. That was the key, we know what the triggers are now and there would be so many that it simply came down to being unsafe for me to go with them. I wouldn't remember any of it because I would have had so many cluster seizures and my husband/son would be exhausted from watching me and containing me when I had them.  They would be distracted with watching me it would totally defeat the purpose of them going.

I was angry.
No, I was furious.
I was blindly pissed-off.

After the first year of hiding in my home from exhaustion   (and embarrassment for me) as we learned to cope with my seizures we, as a family, refused to allow my disorder to control my life. I refused to become my disorder, it was not going to define who I was. Yes, I would do all I could to make sure I could control my seizures (as much as I could).  I live in a small town and pretty much everyone knows I have seizures, it's no big deal. No one calls  911 and usually if we are at a school function the police (who know me by name-as do most of the firemen) stand by to make sure that the guests know we have it under control. We joke that if I haven't had a seizure some where it won't be long before I do.

So, for the first time I simply had to make a decision  NOT  to go somewhere felt like I was admitting defeat. As if this disorder had finally knocked me out. It was during this weekend of being at home that I received a message from a friend I haven't seen in a llloonnnggg time that touched me to my core. I simply sat and cried.

 Humbled.
 Renewed.

 *I have kept their name from this post due to security reasons.

"Hey just wanted to send you a quick note. I work in the local ER ( security) we had a young boy come in with seizures. He had just been told he had epilepsy and he was very upset. So I was talking to him and told him about this amazing friend I had (you) who deals with this every day and how she has a beautiful family and friends that love her. How it is a hard fight but she always battles through and how she has accomplished so much. The young man 8 yrs old was smiling when he left cause of you! Your strength and will. Just wanted you to know you made a huge difference to this young boy!!!"

Reading it again as I posted this brought tears to my eyes...not because I'm proud of what I've done. I haven't done anything at all! I've simply lived and shared my life BUT because I've shared a young boy has hope. THAT is what living my seizure life out loud and boldly is about. HOPE.


I have tripled my daily effort to be better. Do better. Be more then I was yesterday.

Is it hard? YES!

Before seizures I was thinking about becoming a Zumba instructor and/or a Yoga teacher. I've never had a problem with balance. Now, for most part, when I do one legged moves I have to use a chair or one of the posts from my bed. Ya, know what tho, that's ok!! I'm doing better today then I was last week. That is HOPE.

I drive the tractor every once in awhile. Ok, so I back it out but I'm still controlling it! That is hope.

I've worn a dress twice this summer for a couple of hours. Yes, I had a seizure in one but that's ok, next time I will wear lacy bloomers (they are back in style-kinda-even if that isn't what they were intended for). I even have a wedding I'm going to in a couple of weeks that I'm planning on wearing a dress to (that's a quadruple  victory by the way-dress, crowd, perfume & cameras). HOPE.

I'm working out for longer and longer each week. Again, HOPE.

I'm plugging into meetings and training's through my laptop; I can't be in a room but I can hear it and grow personally so I can help others grow. Have HOPE so I can GIVE HOPE.

I not afraid to say once in awhile that I'm frustrated...frustration means I can see an end, I have HOPE.

Emily Dickinson wrote one of my favorite poems about "Hope"....

"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—



PS I have a "Seizure Free Celebration Bucket List" coming soon....