David Julian’s story and battle with Epilepsy

We take so much for granted. We do not appreciate sometimes the simplest things in our lives that bring us so much pleasure. We do not seem to realize that we have so much more than most people in the world.  We must understand that we must appreciate our lives and the things that bring pleasure in our lives, like love, friendship and family.

We must appreciatethe things in life that bring smiles to our faces and warm out hearts with pleasure and happiness. Only then will we all be able to appreciate and love the life we live. The things we enjoy to the most are tools to help heal and cleanse the soul.

I use prayer as atool to heal my soul.  It is a personal enjoyment in my life that brings me happiness and helps heal the many pains that I carry from living with epilepsy. There have been so many seizures in my life that have brought with thempains that will never go away.   They become a part of us, they journey the paths we take and go wherever we go inlife. We can never get rid of them, but we can try to understand, accept them,and learn to deal with them through acts of pleasure that we experience inlife.

I am a 41 year old,single (divorced) father of a beautiful 10 year old girl that lives with her mother. I Live in Southern California in a 1 bedroom condo and go to college(3rd time). I work full time as an alarm dispatcher for Stanley Security (theinsurance is good) but not the pay.

My battle with epilepsy began when I was sixteen; I was on vacation (the summer before my senior year in high school) in Blythe, Ca driving home from New Mexico. I had a massive grand-mal seizure in the car which lasted 12 minutes.

I woke up in the hospital almost 2 days later not knowing what had happened or where I was. Iwas as scared as I ever was and I didn’t know why I hurt so badly. I was so confused; I would want to start talking but then I would pass out again becauseI was so exhausted.

So I left the hospital on the usual (Dilantin) and started the drive home to Santa Ana, Ca.We were all on edge the entire way home (I was so sore and tired still). I can still remember yelling at my parents “my life is ruined now, it’s over”.  How little did I know that this journey with epilepsy had just begun?  Over the next few days I had phone calls and people wanting to visit me and to this day I can remember the look on each one of their faces when they found out that I had EPILEPSY. The stigma (I call it uneducated ignorance) that is attached to epilepsy is nothing short of and I used the word loosely; AMAZING!!!

As you can imagine my mom was freaking out so to speak as to why her son had a seizure – NO I WASN’T USING DRUGS. Yes they actually asked that several times. We all wantedto know “what was wrong with David”.  I have done I think every test that can be performed been hospitalized more time than I care to remember and good grief … I’ve had so much blood taken I could fill a swimming pool. At this point I have been on or tried to take almost every seizure drug approved by the FDA. If the combination that I’m on now doesn’t stop the seizures, I am out of options!

I have had quite afew grand-mal seizures during the course of my life that always seems to cause some type of catastrophic failure in my life... but life goes on!! At sixteen,I was issued a drivers license and I drove for a while.  I was so excited to get my license.  I always felt different from the other kidsbecause I had epilepsy.  I always feltlike I had to prove something.  Now I had something like all the other teenagers. I was a part of the ones with a driver’s license. This was short livedbecause I had another seizure and at that time the DMV suspended my license for a year and a half.

During my senior year of school I was afraid to tell anyone that I had epilepsy except for my best friend Sean (who always had my back) and never said a word to anyone about my seizures. He would always “watch out” for me whenever we would go someplace;I knew that I could count on him.

We had gone to seeevery Neurologist, doctor, specialist of all kinds. We went from Orange County to L.A. County to San Diego County and we reached out to every organization that we could find (Epilepsy Foundation etc.) We didn’t know anything about epilepsy and had to learn all we could. I ended up going to see a holistic doctor in Santa Monica for treatments to see if there was a chemical imbalance.After a while my mother and I were driving home and I had a seizure in the car.I pinned her wrists in the steering wheel and broke both of them. My mother has been my biggest advocate my help and friend (above being my mother) with my epilepsy.  I don’t know what I would have done without her. She is still the first one I look around for and want after Ihave a seizure; she  is the only one in my life that has shared every detail and been involved of every aspect of my epilepsy.

When I was in my early twenties I was working at John Wayne airport fueling planes; I was about ready to get inside of a 5,000 gallon jet fuel truck and head to the commercial ramp when suddenly I went into a seizure. My muscles tightened, my arms curved to the left and my foot went allthe way down on the gas pedal.  I crashed the van in to the side of a private jet which knocked me towards the runwayright in the path of a landing DC-9. I crossed the commercial runway then the smaller runway hitting a helicopter that was on the tarmac and finally crashingin to a light pole. This as you might have guessed ended my career at theairport... and my license was suspended AGAIN!

I slowly was falling into a depression and not even realizing it. I was withdrawing from the world and feeling hopeless inside.  I was Afraid to tell others how I felt.  I felt trapped in a corner.  Obviously I got through that time of my life.I finally met my first (and only) Epileptologist who was able to actually“diagnose and treat” my seizures by getting me on the correct medicines. I remained seizure free for almost 12 years.

I met my wife (ex)and I moved back to New Jersey to start my family. When my daughter was three we decided to come out to California for a visit. While on the plane my daughter had a seizure. It was the single most gut wrenching experience of mylife. We had to make an emergency landing in Ohio and we spent a week at Children’sHospital of Ohio, not the vacation we had planned. My daughter has had a totalof 3 seizures in a year and no more thank God! She is perfect, no medicine oranything they don’t know what caused it. It is not easy living with epilepsy but I would do it a thousand times over if I could take this memory away from my daughter.  I have a fear that someday she will have another seizure.

In July of 2006 I had a seizure while at work. They called it a break thru seizure and increased my medicine. Almost exactly a year later I had another seizure and I changed medicines again trying Keppra this time. It seemed to be a miracle drug for me,I was so happy and with hardly any side effects that I had been dealing withfor years. A month later I had another seizure and another so off of that I came and started another regimen. The last seizure that I had that month and ahalf or so was in November of 2007. My mom flew back to NJ to be with me and we had Thanksgiving together (at Boston Market) that was a first EVER!! Things seemed to stabilize and she left to go home for Christmas.

The big lifealtering event was January 2007 outside a church in New Jersey where I was picking up my daughter for her overnight stay with me. It was snowing so I had started the truck to warm it up and walked over to get her when down I went with another seizure. This time was no different; (as always landing on my knees) and falling on my face leaving me 3 permanent scars.  I was “beat up” as usual from the fall andscraping, bruising and sprains. I went into the hospital and stayed there fortesting and medication changes for three and a half weeks.

My mom flew back again to help me with thingsand be my support. I lost my job during this. We decided that I had to go homefor a couple of weeks and be with family. Since my divorce I really didn’t haveany kind of support structure in NJ. I decided that I needed to move back home with family so inside of two weeks we packed, sold, gave away and moved me back home to California. Yes, I’m NOT going to get in to this too long of story butit was and is the right decision…. I had to leave my daughter for a lot of reasons. It is better (and worse) this way but it is the way it has to be andthat is ALL I have to say about this subject (period).

I had been seizurefree again for a little over two years when one day while riding my bike toschool I had a seizure. I can remember crossing the street then waking up inthe hospital hurting and exhausted. I just couldn’t believe that I had another seizure. I suffered a mild concussion even though I was wearing my helmet and since then all of my seizures have increased with the exception of thegrand-mal (to my knowledge). The petit-mal, complex partial, absence seizuresare with me now more than they ever were.

With all of this Imade the very hard but smart decision for the safety of YOU in mind. ! I willnever, ever get behind the wheel again no matter how hard this makes my life or what I will miss out on. I am not willing to put my own selfish needs beforethe lives of other people….. Life I have learned is too precious!!

I have had to learn to go by other people’s schedule. I am not one to ask for people’s pity or ask for help from someone. I consider myself a strong, independent person.  I want to take care of myself.  Being able to have the freedom to get into acar and choose where you want to go, how you want to go is something we all take for granted.  This is a freedom thatI no longer enjoy and I miss it terribly.

David Julian