My boyfriend has epilepsy...OUR STORY

The Story of Angelina & James....and epilepsy

Hi, my name is Angelina.  I am 23 years old.  I have a 4 yr old son Benjamin.  I met a guy named James (21 yrs old) in December of 2009.  The first night we met, he had come over to my place with one of his good friends that I knew.  We were all just hanging out, a little bit of drinking and playing Monopoly on my PS3.  James was very quiet the entire night, as I could tell he was a little bit tipsy and out of it.  Little to my knowledge, he was living with a serious medical condition and yes, even that first night, I noticed something different about him.  As the evening continued, after many laughs, I finally got James to move from his quiet statue like state into my kitchen to talk to me...trying to be a good host ;o)    

As we started what became a very long 'short convo', I noticed that something was different about this guy.  He was processing information very slowly.  I remember thinking that he just wasn't that interested in me...but he would respond to my simple questions with really thoughtful answers...it just took him longer than most people.  But that was fine with me...he seemed sweet.  We ended up cuddling up to a movie and we have never parted since. 

Okay, so no this is not some gushy romantic story...this is now my real true life.  In just 3 months, I grew to love James...and to hate the epilepsy.  I  don't really recall the first time he told me he had epilepsy.  I do however, remember waking up from my head on James' chest and seeing an actual real life seizure happening before me.  At that point, I was aware of the epilepsy, but not so aware of what to do.  As I rode in the ambulance, staring at my new boyfriend...my head finally caught up with my heart and I began asking myself millions of questions, like...why had I never asked James what to do if he had a seizure....or how often do they occur?? when do they occur??  And then came the hardest of all the questions asked...and my mother asked me this one -- 'Angelina, can you handle this responsibility for possibly the rest of your life?'  Wow....I had no idea...I knew that I cared about James, but I hadn't really considered what future we would have.  All I knew was that I was happier than ever and he treated me like a princess.  My 3 year old loved having him around and to be honest, I was yearning for a more complete life.

So here is James...a young man who was willing to commit and love and give so much.  I was caught so off guard by how giving and kind hearted he was.  We would sit there and just talk about how wierd this all felt...like we had known each other our entire lives.  It all came so natural.  But there was just one thing...as there always seems to be...the epilepsy became our trial.  No, not other girls, not being young and free, not going out and being a young man while I was young mom sitting in my house....no, our trial was epilepsy.  I began to mentally balance my needs and wants.  James met so many of my needs...fulfilled so many of my wants...you could literally see how happy we were to be together.  But in my heart, I began feeling a sadness and we shared in it.  I could feel his confusion when he would wake up in a hospital bed...but then he would look up at me with these sad, desperate eyes and just close them and go back into a deep sleep.  I could feel his vulnerability when he would reach down to find that he was completely naked underneath a very thin hospital gown.  I would just grab his hand and tell him I'm not going to leave his side.

Since December, I have witnessed over 20 seizures.  Most of which were in his sleep.  A few seizures have occured when he appeared to be conscious, but were between other seizures that were occurring back to back.  Until recently, I had never witnessed him having a seizure while awake.

Here is a brief summary of how James' became epileptic and what is going on with him personally now...

James was in a car accident in 2007, in which an ambulance hit the door his head was leaned up against.  The irony is crazy to me - he was hit by an ambulance that caused him to spend the next 3 years riding in them.  Just makes you sick inside.  Well, so they announced him dead on the scene.  However, he was revived.  I am no doctor, but I imagine the seizures were caused by the lack of oxygen and the head injury.  He was 18 at the time and he had no medical insurance.  And with the seizures happening frequently and even more frequently after being prescribed Dylantin, he was beginning to give up on life.  He couldn't work...he couldn't drive...he could barely remember anything that had happened and even the medication was causing the seizures to increase.  He was accepting that epilepsy had taken his quality of life and believed he would not live to see his late twenties.  Since 2007, he has had over 200 seizures...most of which are grand maal.

Since James and I have quickly entered this relationship, many people around me have questioned my future...our future.  How will James help support a life with Angelina?  How can Angelina take care of her child and a grown man?  What if the seizures never stop...can she handle this for the rest of her life?  I know all these questions are asked with concern and love for me.  But if anyone really truly believes I have not asked myself these questions a million times, then they are dillusional.  I am filled with questions...though I really have no true doubts.  With prayer and faith in God, James and I have been able to withstand even the most difficult situations and fears we both have.  

So that is little piece of our story...here is some positive things occuring in our lives right now...

* James is currently in a Legal Aide battle to gain state health insurance...I am in disbelief that they have denied him until now - they say he is not 'full-time disabled'

* He had applied for disability, but was continuously getting denied until we recently found out they had been applying him for the wrong disability...wow...so our prayers are that it finally goes thru this time around

Without medical coverage, James can't receive more extensive testing and has not been able to afford the medications they prescribe...our prayers about affordability were finally answered when they agreed to prescribe an alternative, carbamezapine, which is only $4 for 60 pills....now we just pray that is works.  He was prescribed this medication on March 15, 2010...he currently averages about 1 instance of the seizures (possibly multiple back to back) every 3 weeks.  So, the real test will be time...how long til the next one?  Hopefully never. 

I seriously quiver and feel an upside down feeling in my stomach every time I hear James make a strange noise or twitch and make any sudden movements.  I don't ever want to wake up in my sleep again to the seizures.  It isn't for selfish reasons...I can actually say that I don't panic and never have when the seizures occur.  Yea, they are kind of scary, but only because I never know if its just going to be one seizure or multiple...if this one if going to be the one that never stops....if I will go to sleep and wake up to him dead next to me.  I know that sounds so grim, but I guess that is what epilepsy is.  It is lifeless.

On the other hand, I have learned so much from this experience.  Life matters!  Hold onto to those you love and make sure they know you love them.  Give them hugs and kisses and time.  And if you are able, spend your precious free time sitting next to them when they are in the hospital.  I can't speak for anyone else, but when James wakes out of a seizure, he is looking for something familiar.  I remember bawling in a waiting room because I had just admitted him after he had a seizure in my car while I was driving.  I pleaded with them, 'he needs to just see me when he wakes up'....I didn't want to be in anyone's way...I just knew how much he needed the comfort of a familiar face...to know that he wasn't at the hospital alone.  I can't explain the hurt I feel everytime he lays helpless in those sterile rooms.  But you must stay strong.  As much as I cried in that waiting room, I never showed him a tear.  I told him that I will never give up as long as he doesn't.  Truth be known, he has a few times, but I kept pushing him.  We have made it this far...he is finally on meds....so now what???

I appreciate those of you who spent your valuable time reading our story...I am very undereducated about epilepsy and I am learning all the time.  But being ignorant cannot be an excuse anymore.  I want to know everything.  I want to know the diet he should be on....the activites he can do...other peoples' experience with carbamezapine (good and bad)....I also don't want him to feel as though he is unable to do anything for himself...how do I encourage him?  I need some experience from others with epilepsy as well as those who have loved ones with epilepsy.  This is so brand new and so different than the trials I have faced.  I know this has affected me on the outside looking in...I can't imagine what it is to have epilepsy.  I feel for all of you out there with this disorder!  Thanks again for just listening, even if you don't comment.  I needed to tell someone what I have been living with on my heart.

Angelina