Driving

I read a post recently that got me thinking about driving, and so here I am blogging about it… Go figure.

Remember the excitement of getting your learners permit? Remember the thrill of getting behind the wheel for the very first time? The freedom, the amazing feeling of just being able to get away whenever you wanted? Now imagine that being torn out of your hands because of something you can’t control.

I live in a small city, with “decent” public transportation. It doesn’t run on Sundays and it only hits a stop once an hour. To get to another line you have to go downtown or learn the ins and outs of the system. It is not easy. When it first clicked with me that I could no longer drive — when I stopped having simple partials before my complex partials — I cried. Everything I’d worked so hard to get was now gone. I had lost the excitement, I had lost the thrill. I had lost my freedom.

That’s not to say I can’t get around. I’ve learned the bus system – ish… I’ve gotten a bike. I barter with my neighbors for rides when I need to do major grocery shopping. I get around. I just can’t do it when I want. My life now revolves around other people and the schedule they desire. I am dependent.

I think that’s one of the hardest parts of this thing… This disorder, disease, malfunction takes away my freedom. It takes away what I dreamed of having as a child.

My car still sits in front of my house, parked on the street waiting for its driver to come back to it. Waiting to be driven down country lanes and feel the rush of life passing it by (well, it would if it really have feelings). I refuse to sell it as I hope and pray that one day I’ll be able to use it again. I’m unwilling to give it up. It is my last bastion of independence, the last string I’m able to cut.

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Exciting!!

I’m so excited. My best friend is going to be here shortly. I have prepared lasagna for dinner (which will be a late dinner, definitely), I have cleaned… ish… my house. I even managed to get my car inspected so Caroline and Adam will be able to go where they please, when they please (the tags expired in August. Whoops). I have made plans.

The thing is, no matter how many plans you make, how excited you get as someone with epilepsy your life is completely unpredictable. As of this second I’m fine. In 20 minutes my life could flip upside-down and my excitement may turn to fear that I’ve ruined my best friend’s holiday as I’ll be too tired to move.

I don’t think its fair that this is how I have to think. I don’t think its fair that I have to depend on others to get the basics in my life accomplished. It isn’t.  I try to stay positive, I try to not worry about the simple things. My best friend will be my best friend regardless of how our time together goes. She’ll understand, she always has, not just about my seizures, but about me as a friend.

 

Government and Epilepsy

There was a time I was a through & through Libertarian (with that capital L). I felt that less government is more government, and our nations was founded on the idea that we should not have our Federal Government in our day to day lives. In a lot of ways, I’m still right there. I want to believe that we would do well without unemployment, Medicaid, Food Stamps… That charity could fill the place of our government.

I don’t know that I truly believe this anymore. My last job (a government job), I had an uphill battle trying to make people understand that I wasn’t mentally insane, and that I DID really need help. Between the ADA, EEOC and threat of lawyers I finally got them to give me some much needed help. Then, less than 6mos over it started all over without cause. They didn’t say it was a review, they told me should I not agree with no help from them they would make me a receptionist.

I’m a college educated woman, with lots of experience as a social servant. I want to help people. I want to make their lives better. Unfortunately, without the government stepping in with acts, and laws I wouldn’t be able to do that through any job. With the job market the way it is, should I not be protected under the ADA & EEOC, I would not be hired, or fired as a person who “couldn’t do their job as described”. Think about it, if you owned a business and you had two choices, both equal in every every way except for one cannot a) drive b) function if med changes happen c) be mentally/physically present constantly due to seizures. Which one would YOU keep/hire? It sure as heck wouldn’t be seizure girl.

So without the ADA & EEOC I wouldn’t be able to work. With less government I wouldn’t have SSA Disability to turn to, and then where would I be? I’d be living with my parents with no way to help support myself. I would be a burden. My condition is heart breaking enough, why would I want to burden them further?

Not to mention without the hope of the NIH case study, surgery would be off the table. Their research is one of the main driving forces of Epilepsy research. Can we really say, given the statistics of giving vs people with the disorder we’d be SOL in a bad way. The NIH is a life saver when it comes to those of us with Epilepsy.

Some say I can turn to charity. The fact is charitable giving is hardest hit when the economy is down. It’s like pulling teeth to get people to donate even the smallest of things. I’m lucky to have some friends & readers that would do anything to help me raise money, but without them I’d be nothing. Again, it goes back to being a burden. I *CAN* work. I do work, everyday, but instead I would likely be sent to the back of the line, begging for work, and meds. What a bad combination.

Government and politics will always play a huge role in my life. I love to see how our world can twist and turn based on the momentum of humans. We really can change the world should we just try. So as election day comes up (in Epilepsy Awareness month no less), really consider what government does, and what you want it to do. I’m learning over time what I want my government to do for me, but what about you?

Tea Leaves

This morning as I was doing my early morning surfing and preparing myself for the day, I took a drink of my tea. I’m drinking that green herbal stuff that doesn’t come in little baggies so you get stuck having to actually… see the tea leaves. As I looked in the bottom of my cup I saw the few leaves that escaped as they swirled around.

If I were a different person, I may look at those tea leaves and try to figure out what they mean. Maybe they mean I’m going to have a happy, healthy life. Maybe they mean my true love is about to come. Or maybe they just mean I need a better tea thing-a-majiggy.

The fact is, my future is uncertain. I may remain forever as I am now. I may always have seizures waking me up in the morning, bothering me at work, making it so independence becomes harder and harder. OR I may become seizure free. Maybe we’ll find the perfect combination of drugs that “cures” me. MAYBE just maybe I’ll be able to have a temporal lobectomy and stop having seizures that way. Maybe I’ll cave and get a VNS (for me it’s my worst nightmare, for others it’s been a dream come true).

I just want some certainty in my life. I’d like to know that tomorrow I won’t have any seizures. Tomorrow I’ll be able to get in my car and take myself to the store and get a big thing of toilet paper without having to worry how I’m going to get it on my bike, or WORSE take it on the bus. I just want some certainty that tomorrow will be easier.

The tea leaves are now down the sink, never to be seen again. That’s probably a good thing. No good news ever comes from tea leaves anyway.

  • Meg
  • Reid B. Kimball

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