A Pinocchio Story

Preface: 

 Hi Reader.  This post has been one of the hardest for me to write and share.  I like to share positive things, things that sting only briefly and are easily relieved by a good salve of humor, things I am comfortable putting out there.  

I heard lately that when we share only the good things that happen in life it appears to others that we "have it all together."  I know, you are laughing right?  Thinking "Oh, Barb.  We know you have issues!"  You've blogged about perimenopause, missing your parents, having depression, and having a LapBand. You are far from having it all together!  
(It's okay, I'm smiling as I type this imagining you laughing!)

But it got me to thinking about what I post on Facebook and what I blog about.  The Facebook posts won't change.  If I am having a bad day I will share my frustrations with my husband or a friend, not put them on Facebook for everyone to see.  Oh I whine well! - but really dislike doing it in public.  

However, time and opportunity presented itself with this post.  This is something I haven't been able to laugh off easily to make it hurt just a little less.

I worked on this post a lot, have rewritten it countless times in the last few days, and had my husband read it.  I've worried about how it will sound.  But in an attempt to keep my blog as real as I can I decided to go ahead and post this.  

Oh, my husband's only critique when pressed?  "It's long." I love him to pieces. Blogs do involve words.  Some stories just take a few more words to tell.  If it holds your interest they were all used well.   


Here goes.


****


Don't you love the story Pinocchio?  I think we all can relate to Pinocchio.  He wants to be like everyone else. He doesn't want to stand out.  He doesn't want to be different.  He just wants to be a real boy!

Now don't get me wrong, being different is good.  Being different makes us who we are. It makes us unique and special.  It makes us... well... us!

But have you ever wished you were just a little less "different" for whatever reason?

I have.

Here's my Pinocchio Story and why I yearned to be like everyone else.

When I was a young teen I found myself at the Mayo Clinic in Rochester, Minnesota, having my first of many EEG (electroencephalogram) studies.   Almost 40 years later I can still smell the glue and feel the cold blast of air that was used to attach each electrode to my head prior to the study.  And there were numerous ones.  I can still remember having those electrodes removed, one by one, but picking the remainder of the glue out of my hair the rest of the day until I was able to wash it.

One EEG later and I had a diagnosis: epilepsy.

My seizures were termed "absence seizures."  They were like brief daydreams.  So with my study done, a diagnosis made, and medication started things seemed to get back to normal and I was doing the usual things any 14-year-old girl would do in a small town: hanging out with friends, being goofy (it comes with being 14), going to school, and perfecting my driving skills.

I don't remember the exact timing or the complete details of this part.  Let's be honest, sometimes I have trouble remembering what  I had for lunch yesterday! But I remember going to our DOT headquarters in our county with my Dad and having my driver's permit taken away.

Rightfully so.  

But talk about devastating to a young teen!  Boy, did I feel "different"....and not in a good way.  I've never forgotten that feeling.  My dad did everything he could to cheer me up. It wasn't the fact that I wasn't allowed to drive that hurt so much. Of course, as a teenager that was a rite of passage I had long waited for, but what really was difficult for me was the feeling I had done something wrong.  Bad people get their driving privileges taken away.  I wasn't bad.  I didn't do anything wrong.  Did my epilepsy make me a bad person?  And if they perceived me as unworthy.. what would others think?

I'm guessing my parents had to provide documentation that I was on medication and had been seizure free for a certain period of time before I could get my permit back.  Eventually my permit was reinstated and I went on to get my drivers license.

But that feeling of being different and unworthy has remained with me over the years each time I have walked through the doors at the driver's license station. 

As a result every 2 years, for the last 35 years, I have obtained the multi-page medical form required by the DOT several months in advance of when my license was due, taken it to my doctor to have it completed, and trudged into a DOT licensing station with it in hand. I felt there might as well have been a sign with a big flashing arrow over me screaming "Caution!!"  

I'm here to get my license renewed.

Yes, I have my medical form.  

They look at it to make sure it has been filled out by my doctor.  

(I think to myself, Yes it is complete, I wouldn't put myself through this for nothing, trust me!)

Then I take my number.



Go sit.  

And wait.  

And wait. 

And the anxiety builds.  

There are 5 desks, which desk will call me?

I'm 5 numbers away, if the rotation stays the same it is going to be that desk.  Of course, it is the one with no privacy. 

How many people are going to overhear the conversation?

I'm on medication, I've had no problems, this shouldn't be that stressful!

But I remember back to that teenage girl who thought everything was okay too.  

They finally call my number.  

I go to the desk.  

I need to renew my license and I have a medical form.

I hand them my paperwork.

I wait to see if the person helping me is going to call out to another worker "I have medical paperwork here. Would someone come look at it for me???!!!"  

Could I give you a bullhorn?  I don't think that person in the far corner heard you.

And because I excel when it comes to worrying I really need to ramp this up and  become even more irrational: What if I don't pass the vision test??

Will I see the blinking lights checking my peripheral vision??

Just please let me get through this and get out of here!

Waiting while they sift through that multi-page report.

Are people looking at me wondering what is taking so long?

Vision testing next... passed.

Peripheral vision... check.

Finally paying.

Handing me my license.

And getting out of there as fast as I can. Seriously, if I was physically able to sprint, I would at this point, and there would be some finish line tape for me to push through as I exit the DOT doors. 

Getting to the car and taking a big sigh of relief.   

Done!....For 2 more years.

I totally understand the need for monitoring medical problems.  Nothing would infuriate me more over the years than hearing on the news that someone with uncontrolled seizures was the cause of a deadly car accident. 

How dare you!?  I'm taking medication, seeing my doctor as needed, having studies, filling out paperwork every 2 years, and doing what I need to do to be a safe driver, and you are giving everyone with the diagnosis of epilepsy a bad name!

Every 2 years.... for 35 years.... I have gone through this.  

You dislike going to the DOT every 4 years?  Try this schedule. And boy was I jealous when people were recently able to renew their licenses online!


 I dislike going to the dentist, but this trumps dental visits by leaps and bounds.  I know I shouldn't be this anxious about what is a seemingly mundane chore for most people.  But I am.  It has gone from fearing people would hear the word "epilepsy" when I was younger to not knowing what people are thinking when I have to present a report and can get only a restricted, 2-year license.   Do they think I am out there drinking and driving?  Do they think I am an accident waiting to happen?  

I even asked several renewals ago about the need to keep doing this as it had been so long since my last seizure (decades)  and was told as long as I was taking medication I needed to provide documentation.  My medication is inexpensive. It has been my peace of mind.  There is a good chance I could have an EEG and be found not to need the medicine any longer,  but that teenage girl in me just isn't willing to take that chance.  So I faithfully continue to take it.  I felt I was doing good all these years by doing what I should be doing, but being penalized for it. 

This month is my birthday.  

Yep.  My license was due for renewal. 

So  in August I gave the paperwork to my doctor.


Just recently I trudged into the DOT with that form in hand.  I grabbed that flashing "Caution!" sign out of my purse and popped it over my head (because I carry it with me just for DOT purposes), and thought: Here we go.  

And the whole process started.  

I'm here for my license.  

Yes, I have a medical form. 

Let's take your picture.  

Take a number.

Have a seat.  

Watch the numbers.  

Which desk will call me?  

If the rotation stays the same it is going to be that desk with no privacy (sigh).

I finally get called and the desk I report to actually has a big sign near it which unintentionally acts as a partition and offers a bit of privacy! 
(sigh - Thank you God for that!)   

I'm here to get my license renewed. I have a medical report.


I hand over the paperwork.  

She looks over my report.  It is taking longer than usual.  

What is wrong with it?? 

"I'm sorry, I just don't handle these reports very often.   I'll have to have someone else look at it."  She's being nice, but I am again reminded that I am different... and that "not in a good way feeling"  is on high alert.

Oh here we go, can I hand you a bullhorn?

Thankfully she walks over and gets a supervisor's help..quietly.  

The supervisor comes over and now they are both looking over the form.  And the supervisor looks up at me....

Here it comes... 

"Wow!  Congratulations!  It has been a long time since you have had a seizure."

I was completely taken by surprise.  

"I need to check something out, excuse me a minute."

Oh, I felt good for a moment there...what now?  

What is wrong with my report? I've included dates and years to the best of my memory.  (over the decades these have gotten more vague but I do the best I can)

Will I pass the vision test?  I've done this numerous times with my bifocals, but what if they affect me seeing the letters well this time?

And what about that peripheral vision test??

Now the supervisor is talking to the other worker instructing her what to do: 

"Since it has been over 10 years since she last had a seizure she will no longer need to provide a medical report and will get a 5-year license with the change in the law."

"What???  I no longer need a medical report??? 

And I get a 5-year license????"

I honestly can not type the relief, surprise, happiness, and disbelief I voiced! It was like every holiday I ever celebrated rolled into one.

At that moment I was in such a state of amazement I'm not even sure what I said or did beyond the above, I just remember the supervisor raising her hands and celebrating with me, so I must have been doing some kind of dance!

You know that attention I was trying to avoid all those years, that was likely not even there, just imagined?  Well I had to be drawing way more attention to myself than I had ever imagined when I was celebrating.  

But I couldn't care less.

I came home with my license in hand and threw that flashing Caution! sign in the garbage. I won't  be needing that anymore.


I am now a real boy.

Happy Birthday to Me!