There's that thing about not having any control

I have a confession, I've had a secret plan all along. I had a big reveal planned. I've told some of you that I haven't had any seizures so far this year. I was really stoked for a "6 months no seizures" sign to post on my Facebook page and the Epilepsy Support Page.  It's actually a really exciting moment for anyone with epilepsy, and in many situations it's the beginning of freedom, the moment you can drive, the moment you are considered "controlled" the moment you are considered "healthy."

I wanted that for myself.

I wanted to share that with you, and post that in a huge celebratory way.

It's how this story was supposed to go.

But...(I think you already know where this is heading...)

Last Tuesday night, after going almost 5 months without a seizure, my body betrayed me, and it happened.

...

Randy and I both tried to talk ourselves out of the negative spin as fast as we could - we unwound ourselves as fast as we could. But my tears couldn't keep up and the thought that I failed and my plan failed and retracing all of my steps, my diet, my sleep, my stress, everything.

What had I done differently?

How had I caused this?

My plan was ruined.

My big reveal spoiled.

I kept thinking I was going to make it to that "easy place" you know...It's that moment where you ride your bike, you are at the top of a hill right before you start going down  I also think about it like a runner. There's that runner's euphoria and at a certain point in a long run there's a high and it carries you. You've done the hardest part, and then there's a moment where you get a lift and you get carried, there's something of an "easy place" and it's where the work pays off...

I thought that I could control this, I thought if I put the work in, I'd get there.

I think that's called bargaining, it's definitely trying to control something I don't have any control over. I've thought about it over the last few days. I'm in a better place and I'm able to focus on what I've gained so much more than what I've lost. This seizure was another reminder that I can't put life on a timetable. I've always tried to plan so many things, pretty much down to the minute.

I've focused on the positive, and sometimes I think it's because I thought there was this reward at the end, like if I was positive then I'd get to "healthy" or that epilepsy would be resolved. I thought I was smart enough or tough enough or just stubborn enough to work through this and it would be done, and I will have made it.

Sound familiar? I think back to my very first post.

I'm a fan of the theory that if you don't learn from past mistakes you'll often repeat them.  I'm not saying that it's why I had a seizure but it's definitely a moment to take a look and figure out my expectations.  Am I living with this? Or am I trying to fix this? I am not superhuman! I can not cure all things. I can not Type A everything into happy.  In fact, I think the whole point is that I was Type A'ing everything into frustration and disappointment (disclaimer - not all Type A people do this, I am just talking about myself.)

So, now I'm starting over, not with a count, because - well that is sort of pointless. At this point I can drive a little. No one is taking my license away right now - today, who knows about tomorrow and I'm getting to take my kid to the library and to the park. I'm starting over with expectations. I guess this is part of my life now. It's like a freckle on my face I'm going to have to get used to looking at everyday now.

Stupid Epilepsy.

I'm sorry (but only kind of)

I'm a liar. No, not a liar. I'm just confused. Well, not confused, I'm on a journey, right? I know that sounds so hokey, and I cringe as I go back and read some of the flowery stuff that I've written. Some of it was soaked in and dripping so much with emotion that I just couldn't wring it out to get down to any sort of substance. But that's okay. It's where I was at, I'm okay with it. I'm also okay with cringing and having a slight knot in my stomach, much like looking back on my wall bangs and the white turtleneck I had to wear in my band photo in the sixth grade.

Sorry - No pictures here...way too much of a cringe.

Can anyone explain to me who decided that white pants were a good choice for middle school girls for band?  I mean there were certain biological events that were imminent and embarrassing - weren't teachers smarter than that? "Who were the ad wizards that came up with that one?"  Probably the band teacher - I didn't like her much. I'd probably still be playing something if she hadn't discouraged me and made me feel terrible and shamed me in front of the entire band several times.  Ugh ... plus those white pants!

Tangent, sorry.

So back to why I'm a journey-liar-ish-emotional-non instrument-fear of white pants wearing person...

Several posts back I mentioned very clearly that at 35 years old I had no idea how to be happy. Over the course of this whole whale riding of an experience I've spent a great deal of that time underwater holding my breath.  But recently, I've come up for air, and it's felt great to breathe again. It's not an answer to the question but a place to begin.

I preface this next part with a STRONG EMPHASIS THAT I AM NOT TALKING FOR ANYONE ELSE, JUST FOR ME: (But maybe someone has another issue - I think sometimes that if we could just find a way to get beyond these limitations - we'd all be floating along...) okay getting to it...

One thing I discovered very quickly as I came up for a breath and I started to get a little energy back was that, despite some other lingering serious issues, I was able to do some exercising again. This time exercising felt different. It felt different because I was so much lighter. I did not seek out losing weight at first, but it was a byproduct of what happened to me. I've mentioned that from my very first seizure I've lost a lot of weight.

Also, no pictures...I don't think it's important to post that because it's not about appearance it's a personal thing.

Although I'm not entirely sure, but it's possible, that being a little overweight may have stopped me from doing things that I enjoyed doing when I was younger and a little leaner. Anyone else know how that happens? You gain 10 lbs one year?  Then 5 the next?  Then another?  And it just gets away from you...it's like the real you starts slipping by and then before you know it you look and feel like a different person.  

I used to be fearless and brave. I used to dive into things, jump off of things, go rock climbing, horseback riding - you name it, I never wanted to say no, If it was an option, I wanted to say yes.  But I realized slowly over the years I started to say no, this confident girl had turned into a shy woman, not just because of the weight - although maybe that is how it got started but soon after it became a learned behavior - it stuck.  I still had some bravery in me, mind you, and I still had fun, but it wasn't the TRUE ME, the AUTHENTIC ME, the way I was before. I lost something as I was gaining something as the years went on.

These days I carry my son around, and I often remind myself of some of the weight I used to carry around. Not because I feel as though I want to punish myself because of how terrible it was, but just a reminder as a symbol of how I felt weighed down, and held back. It's really not easy to carry him everywhere! I'm really glad he can walk now!

Ok, here's the other thing I realized, I think people mean what they say. Both the good and the bad. So often I've given people the benefit of the doubt. Especially in my career. I'd let people walk all over me and then defend them. It's was an exhausting part of my work. But it was one for all and all for - well honestly, it didn't always work both ways.  People would look me in the eye and say horrible things to me, but I'd go to work and forgive them and move on.  I kept allowing the negative things to continue, I didn't think they "meant" what they said I thought that it was a facade or a mistake.  And a good bit of that Pollyanna-esk attitude is helpful, but eventually you have a responsibility to yourself to reach a point of understanding that they really are who they are telling you they are, it's time. I've definitely missed that time...several times.

But there's an upside, right? If people mean what they say, then when they say something good, they mean it too. So when they say, "come to my lake house,"... then you should go to their lake house. Don't say, no...and brush it off.  You go to their lake house! LOL. In my life, I tend to walk away from generosity, but offer it. I was discussing this with a friend recently. The funny thing is we are the same, we do the same for each other, we are more like family then friends.  And that is what family does, they are open, they share, there is no "even -Steven" no expectations, just generosity, and openness. There are no secret intentions, no exchanges, no expectations. I get annoyed when people expect things from you because they did something for you, "Well, I lent you this, so you should give me this?"  Are we friends or a library?

We went to our friend's lake house a few weeks ago and all of these things were encapsulated.  Not only an amazing time sharing in the generosity of others but I got to be a kid again, kayaking, jumping in freezing cold water because I felt brave again. I rolled around in the dirt with sweet and friendly dogs. I saw my sweet baby boy enjoy the outdoors just like his Mom. I daydreamed about the first time I would take him fishing, his first time on a boat, his first time camping. And my family surrounded me.

I was overcome with happiness. So, forgive me for lying, I just forgot, I didn't mean what I said.