The Untold Adventure

This blog has chronicled "The Adventures of the Northwoods Nomad".  Some of them have ended with me surviving a wreck (or causing one.  I'm not sure if I've told that story).  Others are just plain weird.  But there is one adventure that I've yet to tell.  It's is my life long bout with epilepsy.  Yes.  I have epilepsy.  I've had it the majority of my life and it has certainly been an adventure!  For awhile it subsided enough that I was able to drive and, truth be told, if things stay they way they are now, I could probably drive again.  Will I?  No.  Why?  There's always a chance that something might happen and if something does and someone dies or is hurt as a result, is it really worth it?  No it isn't.  It does make things a bit more difficult but I've managed to get by for the past few years and I'll make it.  So here goes.  It's quite the ride so hang on.  :-) 

I was diagnosed with epilepsy when I was eleven.  Initially, the seizures were small but eventually I started having grand mal seizures and it got to the point where I was having them five times a week.  I was fortunate that I had them at the same time every day.  Every day, I would get up and my mom would sit with me until I had my seizure, then I'd sleep it off and go to school.  I had been homeschooled from second grade through ninth grade which helped, not only to develop a good educational foundation but also we were able to at least get somewhat of a handle on what was happening to me before I returned to school.  My school really worked with me.  We were able to work it out with the school so that (initially) my first three hours were study halls to give me enough time to sleep off the seizures.

I really don't remember much about high school.   Between the ages of thirteen and seventeen I was trying a lot of different epilepsy medications.  At one point I was on two different medications, Tegretol and Dilantin, and was taking 1800mg a day.  That's about as high as you can go.  I tried every prescription drug on the market with no success.  Basically we spent four years trying different drugs, working with levels, and seeing different neurologists.  The third and final one we saw told my parents that there really was nothing more he could do.  His recommendation was brain surgery and referred  us to MINCEP.  (www.mincep.com) in Minneapolis, MN.  They were the first comprehensive epilepsy center in the United States and have served as a model for epilepsy centers throughout the world.  At that time we had two options.  We could go to MINCEP where they were doing the surgery I needed daily or we could go to the University of Michigan (that's where my parents' insurance company wanted us to go) where the doctor had done it once.  Forgive the pun, no don't forgive the pun.  It doesn't take a brain surgeon to figure that one out!

Prior to doing the surgery they had to see if I was even eligible.  If the infected area was in a place that also had motor skills, (i.e., sight, speech, etc) then they would remove what they could and do their best to control the seizures with medication.     I spent two weeks at MINCEP going through tests so  they could see exactly where the damaged area was.  They were able to determine that no motor skills were in the damaged area.   As it turns out there was nothing there.  It was dead brain.  (So many jokes, so little time). 

When I was born they used forceps and I had a bruise on the left side of my head.  My mother was told it was nothing to worry about.  However, the bruise caused my brain to kind of reset.  It moved everything to the right hand side.  I was left handed when I was born and now I'm ambidextrous.  When the doctor performed the surgery he said he was pulling up layers of dead brain all the way down to the grey matter.   

My high school was very cooperative  with us.  I was gone almost two months and still graduated on time.  They faxed me my assignments.  In one class the teacher just had me read a book.

Looking back you see things from a different perspective.  Going into that surgery I wanted one thing.  A driver's license and I was going to get it.  I didn't pray.   I just knew it would work.  It shouldn't have.  Mine was a horizontal view.  However, there were hundreds (maybe more) of people who felt differently and were lifting me before God.  There were literally people all over the world praying and if it wasn't for them I could very well still be sitting in my parents' basement.  Since 1992 I've lived in North Carolina, Michigan, Colorado, Ohio and I've had a full time job for twenty one years as of this year.  In each place I've been able to live on my own; prior to 1992 that may not have happened.   

When I was there one morning I got more letters then the entire floor!  They were all cards, some from people I didn't even know.  I also got cards from my high school's faculty, my biology class, the football team, cheerleaders, (I was on the yearbook and took pictures at the games)

Then of course there was a small bonus.  January 26, 1992.  The Washington Redskins were playing the Buffalo Bills.  Most people were in their living rooms watching the game.  I was in a hospital room.  However, my room was in Minneapolis.  :-)  I honestly don't know how close I was to the Metrodome but I was the closest I'll ever get to a Superbowl!  It was pretty cool.  I had made a bet that if Buffalo lost I'd shave my head.  It was a pretty safe bet and one that I lost.

Thankfully, I didn't need much rehab...initially.  But there's an interesting twist to this particular point.   The human body is going through many changes around age eleven and the epilepsy started to mature as well.  This had an interesting side affect.  The normal mental growth of an average teenager wasn't the same for me.  That's not to say I didn't have any.  When I was seventeen I didn't have the brain of an eleven year old.  I think the fact that my parents pushing me to read and educating me outside of school (even after I went back) really helped.  The fact that I graduated on time is evidence of that.  They were constantly reading to us.  Every morning.  In fact, that's what we did while we waited for me to have a seizure.   It kept my brain working.

source:   http://neurodoc.in/vagal_nerve_stimulation

After my surgery I spent pretty much an entire decade in a "discovering life" mentality.  I suppose that's what most people in their twenties do.  However, I was combining the teen years I'd missed with my twenties.  I did a lot of stupid stuff.  Again.  Characteristics of both.

During that time I had been seizure free for several years, and in 2003 my neurologist asked me if I would be open to having a Vegus Nerve Stimulator installed.   It is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. (http://www.epilepsy.com/EPILEPSY/vns).  It is battery powered and the battery lasts seven years depending on the setting.      I actually had one of the first models so I watched them go from using laptops to check the battery power and pulses to the current (no pun intended) model which is the size of an iPhone.  Ironically the scanner I stick on my chest is still huge.  I've always thought that was weird.

In 2004 I started having seizures again.  It happened fairly regularly over the next few years.  I was living in Upper Michigan which was great but it not an area that is conducive to someone who is not driving.  In 2008 I had the opportunity to move to Colorado Springs as my brother (Joel) who was stationed out there, knew I was having financial difficulties,as well as the medical issues (driving and such) and offered to put me up.  I ended up being there for almost four years and he made some tremendous sacrifices that I am very thankful for.

As I said, one of the reasons I moved from Michigan to Colorado was because driving was an issue.  What I did not know was that Colorado Springs was running out of money and they were making budget cuts.  One of the cuts they made was to the public transportation system.  They cut out weekends and shortened the hours of operation during the week.  The buses stopped running at seven pm.  Since I started work at nine and I got off at five I had to come up with something else.  My hours and their hours didn't really work out too well together.  Now, initially, I did try and take the bus to work during my first week in Colorado Springs.  Joel had dropped me off the night before.  That morning I rode home but fell asleep and missed my stop.  The driver woke me up at the end of his route.  I was on an empty bus.  Oops.  The good thing was I was close to Walmart, so I went in there, bought a bike, and started riding home.  Since I finished work at five and it was about nine at this point Joel called me to find out where I was.  I was about ten miles out and he ended up coming to get me. That's how I started riding to work.  It was a good thing too because I eventually I would've had to start riding and by starting off doing it I was ahead of the game and in really good shape!  By the time I left Colorado Springs I had ridden over thirteen thousand miles.  Twenty miles a day.  I rode in everything but hail and the only reason I didn't ride in that was because it was never hailing while I was riding.  I wore a ski mask, ski goggles (when needed), long johns, thermal t shirt.  The works.  I even had studded tires.    Some people thought I was insane and I  probably was.  Maybe I still am.  :-)  The bottom line for me was (and is) I will get to work.  Period.  I crossed the line one time but fortunately I was prepared for the cold weather.  It makes for some good stories though!  :-)

Now, based on my experience, If you are looking for a good neurologist, Colorado Springs is not the place to look.  I'm not saying they aren't there, but Colorado Springs is a city focused on athletes.  If they are going to bring doctors in it won't be to work on your brain.  I had a hard time finding a good neurologist.  My experience was not good.   But that's just me.  Others may have different experiences.  I certainly hope so.

In 2011 I moved to Ohio and once I got here I called MINCEP and asked them who they'd recommend.  They sent me to the UC Health. (http://www.uchealth.com/).  They are one of the top teaching hospitals in the nation.  During my first several months here I had several grand mal seizures but what I found out was that there were several drugs that I didn't even know about.  (The neurologist I had seen just prior to my leaving Colorado Springs had told me there was nothing more he could do for me except monitor my VNS)  Those meds eventually helped to get my seizures under almost complete control.  I will never say complete control as there is always a chance for a seizure.

In closing, it's been amazing to see what God has brought me through and the road  he has taken me down.  I won't say it has always been fun but that's life.  He never said it's be easy.  I can't wait to see what God has next for me!  The adventure continues!