One month (31 days)

That's how long until my wedding. I must admit, that for a several years, I really felt as though marriage was not something that was going to happen in my future. The epilepsy was a significant part of that.
Would I ever get my seizures fully under control?
If so, would someone want to be with me when I could fall back into the deep end of the epileptic swimming pool at a moment's notice?
If not, wouldn't being with an epileptic scare women away?
Would I need to look for dating prospects at epilepsy support groups? Find someone who was going through what I was and could/would understand and deal with it?

As silly as that may sound, it was my thought pattern for quite a while. It took the support of family and friends to come to grips with the fact that everyone has their issues; everyone has their hang-ups.

And so I put myself out there. I went looking for dates wherever I could find them. Friends of friends. The bar. And finally online. Everyone said I should give online dating a try. It was what everyone was doing these days. So I tried eHarmony, 8 Minute Dating, Plenty of Fish... eHarmony was the best, but that wasn't saying much. It really flopped, despite my trying for well over a year and a half. So I gave up on online dating, until somehow I would up hearing about match.com and gave it a whirl. Within a month, I was kickin butt!

One particular week, I had two first dates and one second date! The 1st first date was on a Tuesday, and we went to grab a bite and see a movie. We both agreed that there was simply no chemistry. Oh well! no harm, no foul! Then I had a first date on Friday, and a second date on Saturday. The girl I was going on the second date with seemed pretty cool, and I was looking forward to seeing a movie and grabbing some food with her afterwards. The girl I had a first date with on Friday... was Mary.

Now you can call me cheesy, trite, or even cliche, but all I know is that I was TOTALLY smitten with Mary from day one. To the extent that the next day, when I had that second date with another woman, well... let's just say I turned into a total cad... I met her at the movie theatre, and we went in to watch a movie. I was a little reserved, and after the movie when she asked if I wanted to go grab a bite, I pulled the old "well you know, I'm not really feeling good... I think I'm gonna head home... but I'll call you later!" And I never did.

It's one of those things of which I am NOT proud, but ALL I could think about that entire time at the movie was Mary. I had NO interest in this woman. It was about Mary. Maybe it was that she laughed at my jokes. Maybe it was that she told jokes as dirty as mine. Maybe it was our mutual love of thai (and other) food. Whatever it was, I knew that I was going to focus all of my attention on Mary. I stopped responding to other people online who found me, and never did searches of my own.

I cannot even begin to describe how much I love this woman, and how thrilled I am that in 31 days she will walk down the aisle to me, exchange vows, let me put a ring on her finger, kiss her, and have announced to the world that she is my wife, for now and forever. I had figured out during my tenure of online dating that there were women out there for whom the fact that I had epilepsy was quite simply not an issue. Mary is one such. She takes amazing care of me after I have a seizure. Makes sure I have water, my medicine, food, whatever I need. And invariably when she comes home from work, I will be gifted with a Nestle's Chocolate Milk. That is love. :-)

So what is the point I am trying to make? It goes back to my silliness of thinking that the person with whom I would fall in love with and who would fall in love with me would, for even a second, think that epilepsy defines me. It doesn't. Mary knows this. She loves me for who I am, as I do her. She loves me for everything that is a part of me, and I am greater than the sum of my parts. And Mary is greater than that. And I love her for it. And I can't wait until 31 days from now when I will get to tell the whole world (or at least those family and friends who will be there with us)!

Greg

Coming Out

I've never stopped to consider how difficult it must be for people with epilepsy to come out and discuss what is happening to them. While easier now than it was 10, 15, or even 25 years ago, it is still viewed by many as exceptionally rare or out of the norm. The statistics paint a frighteningly different reality.
According to the Epilepsy Foundation, there are nearly 3,000,000 people affected by some form of epilepsy. That's about 1 out of every 100. There are 200,000 new cases of epilepsy reported each year.
http://www.epilepsyfoundation.org/about/statistics.cfm

When I think about all the people who have passed in and out of my life every day... People with whom I went to school. I had 400 people in my HS, and nearly 2,000 in my college. I don't know of a single other who had epilepsy when I was growing up. But they're there. People whom I know socially from the bars and groups of which I am a member. People from the jobs I have held. Friends of friends to whom I am introduced at parties.

In the last few years, the number of people I have met who have epilepsy, know someone who has epilepsy, have a family member with epilepsy, etc., is astounding.
It's not that there are that many more people being afflicted with epilepsy (or maybe there are and I am not as up on epilepsy statistics as I could/should be), it is simply that people (like me, even) realize as we get older that there is no reason to hide this.

I am not going around with a big sign or badge saying "Hey World, look at me! I have epilepsy!" Far from it. (I do wear a medic-alert bracelet, though, and sometimes people ask about it.) But I am not afraid to talk about it. All my friends know, but it's not a focus of our daily lives. My best friends know about my battles and will ask about how my medications are working for me, and if I have had any episodes. They care and are concerned. This is why they are my friends and one of the many reasons I love them as much as I do.

I have been able to connect with old friends whose children have been afflicted, work friends whose family members are afflicted, and have met more people who have spoken about their being afflicted. Did this occur merely because I am open about my own epilepsy. Not at all, though I am sure it helped in certain cases.

The moral of this story is that talking helps. It can be cathartic, and the love and support you will invariably get from family and friends (the right ones, at least) is worth its weight in gold. I know it has been for me.

So Mom, Dad, Laura, Mary, aunts and uncles, and other friends too numerous to list; thank you for everything. You have made my journey through dealing with epilepsy that much easier to deal with.
Greg

How do you know?

I read an article today (a twitter from brainthunders - thanks Alysse!) that was an interview with a former member of the New Zealand All-Blacks (their National Rugby Team): http://www.nzherald.co.nz/rugby/news/article.cfm?c_id=80&objectid=10667235
In it, Leicester Rutledge talks about his history with Epilepsy while he was playing, and how he wouldn't know anything was happening since he lived alone. It wasn't until he started sleeping with his wife (his "mary," though I am not sure if that is her name, of course!) that she started noticing them so he knew exactly when they were happening.
His story resonated with me, but hearing him speak about his inability to come out and talk about his condition 30 years ago made me realize how far we have come.
But we still have a long way to go.

Brain Surgery

I follow posts on LinkedIn and other blogs, and now and again I go back and re-read what I posted however long ago. Today I was reading about my thoughts that at some point in the not-to-distant past, I thought that the possibility of my having serious discussions and investigations into possible surgical treatments was far realer than perhaps it was (or even is now).
The idea of brain surgery scares the ever-loving crap out of me (as if someone out there actually says "Gee, I'd like to go have my skull sawed open and surgical instruments stuck in my brain!"). But I do think now and again about what the future holds for me with respect to my epilepsy.
I am fortunate enough to be marrying the most amazing, incredible, wonderful, beautiful, sexy (ok, I'm losing my pg rating here) woman in the world in 37 days. I have thoughts about what my life will hold with epilepsy:
Having children.
Growing old together.
Right now I am on a combination of barbiturates and Trileptal. I feel tired now and again, which is an understandable side-effect of the barbiturates, but if it keeps me seizure free, I'll take lethargy over brain surgery any day of the week and twice on Sunday. But the fear of "what if I don't find a good balance of medication" still looms over me. What if my doctor says to me "Greg, we need to consider surgical options." What if.
Scary.

A Solid Run

As the wedding approaches, I am trying to get out more and exercise in addition to eating healthier. This past weekend, I ran in the Damon Runyon 5k, whose course was laid out throughout Yankee Stadium! It was very cool, and we even got to run around the field on the warning track for a couple of laps!
I was a sprinter in track in HS and College (not anywhere close to elite, but I enjoyed competing), and a few years ago tried to get into running longer distances, to increase my endurance and improve my overall health.
As I have mentioned, my seizures are almost completely nocturnal. I say almost as there have been a few instances through my nearly three decades with epilepsy when I have seized while awake:

- My first seizure in 3rd grade, during the pledge of allegiance. :-) (I actually remember this one - pretty interesting memory!)
- A seizure while living with my roommate in Manhattan shortly after college (I was extremely drunk, not medicated, and chalked it up to the alcohol).
- A seizure at a pool match one league night (at the bar, but not drinking).
- And I seized while running during my more aggressive running phase a few years ago.

This last seizure occurred on a relatively hot day, and I was pushing myself on a long run (around 4 miles). On the sidewalk, I suddenly collapsed. Had it not been for a passing motorist who saw me fall and called the EMTs, I do not know how long I might have laid there. As it was, part of my fall contributed to a torn rotator cuff, and I eventually had shoulder surgery.
While I don't think that I am going to fall and tear my other shoulder (I have eliminated most of the other more significant factors of that injury from my life), I do still worry about pushing myself too hard in a workout and seizing. I simply don't know if any of the "big 4" had a contributing factor that day. I can rule out alochol, but stress? Running can be stressful, particularly when you are pushing yourself. Dehydration? Obviously. Exhaustion? Duh.

So back to yesterday, where I did a 5k with my friend and trainer Victor. I thoroughly enjoyed it, and would love to get out and run even more often, and truly want to get myself back to where I was running a few years ago, when I was doing a much better job of running often, running good distances... Heck, running outside, as opposed to just on a treadmill!
But I still worry about that seizure...

I wonder...

I find myself at work with somewhat of a headache and the typical exhaustion I feel after a seizure, and yet I don't have any of the muscle soreness that would normally come with a seizure. Perhaps I had one so small it was barely noticeable? Was Mary in the shower or in bed and too zonked out to notice? Who knows.
Bottom line is I will keep at it at work today. Maybe, as Mary says, it is just part of this cold I have been battling for the last week.
Doesn't feel normal though...

Seizure Dogs

It sounds strange to think of a "Seizure Dog," and yet there are animals out there who can sense the onset of a seizure. A blogger whom I follow (Alysse - www.brainthunders.com) has recently learned the devestating news that her dog (who just so happened to have the untrained and natural ability of being a seizure dog) has a tumor in its leg. I'm pulling hard for everything to come out well for Alysse, Tucket (the dog) and her entire family.
Mary has been my "seizure dog" (that sounds horrible, doesn't it?) since our relationship began. She wakes up when she senses a seizure coming on - usually from changes in my breathing, she says. This helps her make sure that I am not in a position to hurt myself or her when the seizure begins.
Now, our building doesn't allow dogs, but Mary has ALWAYS wanted a French Bulldog, so the natural, logical progression is for us to have a "seizure French Bulldog," as if we have a dog for medical reasons, it's not "really" a pet, is it? :-)
In our next building, perhaps... I will get Mary that French Bulldog one day. And if it is also a seizure dog, all the better!
Be strong, Alysse - Lots of good wishes are coming to Tucket for a speedy recovery from all over! :-)