Driving Miss Katie

ImageThis is a picture from many years ago, when I used to drive.  It’s been 4 years since I’ve driven a car.  They have been four long, long, long, years. There are days when not being able to drive is harder than others.  It’s been so long since I’ve driven that there are days and weeks that I don’t think about it at all.  But then there are days when it’s the only thing I can think about. Today is a hard gray day and the kids are stuck inside.  I want nothing more than to get into the car and drive.  There are a million rainy day things we could go and do.  But I can’t drive and we are stuck inside.  It’s too rainy for taking the bus.   The park, just across the street, is a no go.  They are calling for thunder and lightning.  Metal playground equipment is off limits all day.  I am terrified of uncontrolled burst of electricity. That is probably strongly related to my reoccurring intractable seizures, also uncontrolled burst of electricity, that have put me into this predictament.

There is nothing that hurts worse than somebody asking me, “When will you get your license back?”  Never.  Never.  NEVER!  I have given up driving and the dream of driving again.  I have excised that part of me.  I have cut it out and throw it away.  It’s just not safe for me to drive.  Not for me, not for my kids, not for the world.  I could never forgive myself if I had a seizure when I was driving and hurt someone, or myself, because hurting me would hurt my family.  So, I don’t drive.  Cars are death traps, hulking metal behemoths that crumple and explode.  All it takes is one second of inattention.  I lose seconds all the time.  And I don’t know it.  I don’t know when exactly it happens, I know that it happens.  And I can’t control it.  There are no rules to seizures.

I have to tell myself this story all the time.  I have to remind myself why I don’t drive.  It is such a burden for me and my family.  Non-drivers will nod in agreement.  Drivers who haven’t to lost their license can never understand the depth of my loss.  I am chained to a substandard public transportation system that makes it improbable to use.  I rely on others all of the time now.  My husband is now my chauffer, which he resents greatly at times, rightfully so.  It sucks for us all.

Right now, I have a strong book lust that is making me missing driving more than most days.  I want to go to the Great American Book Sale and wallow in used books and my favorite kind of books, discarded library books.   My daughter just told me, “I wish you could drive again mom.  I wish you didn’t have seizures anymore.  I wish we could just go to the book sale or where-ever.”    All I could say was, “Me too.  Me too, honey.”

But I don’t have that option, despite the fact that I am an excellent driver.  I drove for 15 years and I only got pulled over once.  And that was not my fault at all.  I had a burnt out headlight.  I didn’t even get a ticket.  I just had to take my fixed car to the police station the next day.  Done.   It had nothing to do with my ability to drive.

I never got into an accident with another moving car.  I’m not going to lie and tell you I never tapped another car when I was parking.  I did kiss bumpers with another car once in a Giant Eagle parking lot.  And one time in high school, I got my dad’s Ram Van stuck in a snow bank.  That was clearly due to the snow and my inexperience.  I learned an important lesson that night and I never slammed on my breaks on a snowy road again.  Despite a few bumps (and also once a ditch, backing up) in my first year of driving, I never got a ticket, never caused an accident, and was clearly an excellent driver.  I never once texted while driving.  It physically hurts me to see the way people drive today.  I am such a better driver than most of them.

I used to drive all the time.   I took my husband to work and picked him up.  I did all the grocery shopping by myself, not with the whole family by necessity.  If you have kids, you know what a sacrifice that is.   When we ran out of TP, I hopped in the car and ran and got it.  When I wanted to go visit with a friend, I went.  No big deal.  I didn’t need to arrange rides to and from.   I didn’t have to make sure there were enough seats in the car for me and my kids.  I used to put the kids in the car and drive around the peninsula while they slept peacefully in the back seat.



Then there was the time that I moved from State College to Erie, PA.  I drove our minivan over Central Pennsylvania’s mountains.  I thought I would be nice to my cats and give them free reign of the van.  They got into a fight on top of me and one of them pooped on me.  I was on the highway, coming down from the high road called Skytop for a reason.   I did not get into an accident.  I drove on until I could safely get off the road and lockdown the cats.

Another time in Centre County PA, I was driving over different mountain when my car died just as I had crested the hill.  Boom, no engine.  Or rather, there was no boom, just silence where the engine’s roar should have been.  I had three miles of mountain to get down with no power and no power steering.  I popped it into neutral and coasted happily down the hill to the gas station that was located conveniently at the base of the mountain.  Turning into that gas station was the hardest I’ve ever had to turn a steering wheel before.  I did.  I drove it.  At one time, I was an excellent driver.

There was nothing I liked more than taking a ride down to the public dock by myself.  I would get some coffee and go watch the waves and the seagulls and the clouds and the sunset.  I don’t have that at all anymore, and I never will.  I would sit in my car and write in my journal, protected from the wind and weather, drinking coffee, listening to NPR.  I am nearly crying as I write this.  That time has passed for me.  Forever.


Yes, I can take the bus sometimes.  Yes, I can walk.  It’s not the same, and you know it!  Have you ever taken the bus or walked with your grocery shopping?  What about in the snow?  I live in a town severely lacking in sidewalks and bus-stops.   I’m not in NYC or Boston, there’s no subway, there’s no mass transit system.  The bus in Erie is the worst of any town I’ve ever been too.  And they just changed all the routes to make it worse.  I can’t even get into that today.  The bus route rant is for another day.  It’s too much.  I don’t want to be wistful and angry.

The memories of all the different times I drove are filling my mind with gray clouds to match the rain soaked sky.  I used to love to hop in the car and drive down Route 5 smelling the grapes ripen in September sun with the wind off the lake in my hair.  I used to drive to Niagara Fall just for fun.  It seems like a dream now, like it never happened.   Driving is in my past forever.  I watched my ability to drive get further and further away in the rearview mirror that I will never need to check again.

Also that ditch thing wasn’t totally my fault, because I asked my friend if I had enough room on that side as I was backing up a very large car, in a very small driveway.  She was wrong.  She accepts responsibilty and agrees; I once was an excellent driver.  After I got towed out of that ditch.



Filed under Living w/ Epilepsy

9 responses to “Driving Miss Katie

  1. Nikku

    Katie, I understand, sort of. Luckily my seizures are very few and far in between. In fact I can really recollect only 2. I wait in fear that it could get worse and not being able to drive can happen to me. In fact at times when I get a “weird” feeling (like our super t-storm right now) I try not to drive just in case. I like yourself could never live with my self if I caused something horrendous to happen. Maybe I an reckless and need to “check my self”, but I am more selfish than you are…..it takes a strong person to live your life.
    As you know I live with someone with a severe disability (which might explain my selfishness). From that point of view at times it can be frustrating because well it just is. Most people can’t comprehend what a disabled person lives with daily. At first they understand, then slowly they give up and go on with their lives. Not that they don’t give you their friendship or love you any less, but if you don’t see it everyday it’s hard to keep up (right wording?). Anyway, my whole point is that it is hard, we can’t choose how our lives are supposed to be, but we do the best we can. I will do anything for Steve, begrudgingly or not. I do it because I love him and I know in my heart he would do it for me. I understand the best I can and live happy because I choose to. Maybe I don’t want to leave the party early because he hurts, but those are details. I make good memories with what I got and those are pretty darn good! I’m sure Adam feels the same. Fate brings people together is what I believe.
    Keep your head up, don’t lose your sense of humor and never forget who you are, not what you’re diagnosed with! I’m with ya girl, even if mainly on Facebook. ….because of distance 🙂
    VENT ON!!!!!!!! And drink up because on the upside you never have to be the DD 😉
    As you see I try humor……..

  2. Nikki

    Lol I can’t even spell my name right!!!!!
    Nikki, not Nikku 🙂

  3. Nikki

    Did my 1st comment post?

  4. Wow–Again, Your experience is so similar to mine–I stopped driving 4 years ago too. I don’t have any days when I don’t think about it though. My commute to work time quadrupled–eating into my free time and family time, and the wait for buses–don’t get me started. I really don’t think anyone can truly understand how it feels until they’re actually the one asking for rides, and declining invites because all their kids won’t fit in. We sold my car and my husband also has to drive me everywhere. My daughters have also said on many occasions “when will you be able to drive?” For years I thought every new medicine would be the one that would work–five years later, I’ve given up on that and the hope that I’ll ever get my liscence back.

  5. I’m glad to know that I’m not the only one! Thanks for reading!!

  6. Rebecca

    I haven’t driven in over 6 or 7 years, I think, it has been so long I don’t even remember. My husband drives me around also and it is not fun. I don’t get to go many places, events, shop, or see my family. We have no kids, just pets, due to the fear of a sezuire happening. I am on the last med avaible that I have not already been on and the doc has just doubled the amount. I have a vns in my chest that sends a volt of electric shock to my brain to try and stop the sezuire from happening every minute and a device to “swipe” over the vns to send a more powerfull volt to stop it when it is happening. The sezuires now aren’t as powerful, they are like blackouts, but I still have them and I don’t know when they are coming, which “sucks”! I still work everyday and the girls I work with are awesome to keep an eye on me. I stopped driving when I flipped the Jeep and trapped my husdand in it. He couldn’t get out and I just started walking home on the road. It was at night after his bar closed and we were just lucky a state tropper came by. We live in the country so there’s not much traffic late at night. I don’t remember any of it and I am sooo thankful his leg was only hurt and no one was on the road. It is on the left side of my brain, which effects speach and memory. My doc has now brought up surgery, he has never wanted to do this before, due to speach, but there is a soc who has done several with success. My husband is against this, but I have been dealing with this for over 20 years and I am so tired of having to change meds because my body rejects it after a few years. All I want to do is talk to the man! I don’t think he understands what epilsey has done to me. I have also wondered about a service dog. I had Scout, which was a boxer, and she would lay in my lap or on my feet if I was standing up when she knew I was going to have one and she was not trained. Sadly she is no longer with me. You are not alone out there, I know how you feel, it can be very depressing.

  7. Beautiful post. I can drive but my youngest son has severe seizures and (probably) never will. I saw your post on the Artist’s Way facebook page. Thank you for sharing.

  8. Thank you for reading!! Good luck to your son!

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