Thursday, November 5, 2015

Fear Factor.

As we trudge along in our week, sharing our best epilepsy related facts for epilepsy awareness month, I'd like to take a moment to talk about something more than what epilepsy is.  I want to talk about what epilepsy does.  And I'm not referring to the actual changes that take place during a seizure, although if you'd like, I'd be more than happy to talk about that later.

The picture above was taken approximately 6 hours after Kaitlin's very first tonic clonic seizure and subsequent trip to the hospital via ambulance (none of which she remembers).  You can actually see the bandage on her hand from the IV that was placed in the emergency room.  After blood tests and the CT scan came back normal. we were discharged to home with no explanation as to what in the hell had just happened. 

I've since learned that our experience is pretty typical for a first time seizure/ER visit.

Typical doesn't imply acceptable, but I'll save this thought for another post.

Lack of knowledge and understanding can create an unjustifiable fear of the unknown.  December 13, 2008, would be our first experience with that gripping fear.

It sucked.

Over the next few months, we lived in a constant state of fear- afraid of when and where the next seizure would occur.  Looking back, I can understand that we spent more time afraid of the seizures than Kaitlin did  having a seizure.  Epilepsy can create an unreasonable state of anxiety.

By the time six months of our life sentence rolled around, we were breathing a little easier.  She was responding very well to her very first medication, and she wasn't having any further seizures.  I remember thinking how strong I was, because I was letting her out out of my sight and I was letting her go out with friends again.

But deep down, I was still fearful and anxious.

(I just got better at hiding it.)

Until one day when my doctor asked me how I was doing, and to my utter embarrassment, I completely broke down in front of her.  I shared my worst fears and my greatest stress, I shared my complete exhaustion, and my overwhelming sense of failure.  Five minutes later she handed me a box of tissues and a prescription for Ativan.  Epilepsy can reduce you to tears.

We made it to one year seizure free.  Or so we thought.  Turns out we really didn't, but ignorance is bliss, and we needed to believe that we made it.  We needed to have a reason to celebrate, and we needed to have hope because epilepsy can steal your joy from every day life.

2010 was a complete nightmare and we found out that Kaitlin was really having numerous seizures every hour, they were just so subtle that unless you really watched her, you'd completely miss it.  However, just because you can't see a seizure, doesn't mean it's not happening or having a negative impact on the person. Epilepsy can create a state of unpredictable chaos.

In 2011 we were given answers to all of our questions, and we were told that we should be able to get the seizures under control (there are no guarantees in epilepsy), but if we couldn't, they would send us to a larger hospital in Ohio to help us in our battle. And even though, later in that year, we once again reached another important milestone (no tonic clonics!),  we didn't celebrate or make a big deal of it, because we were just waiting for the other shoe to drop.  Epilepsy can create pessimism.

Those six months turned into a year without a tonic clonic seizure, but instead of being happy,  we became increasingly frustrated because she was still dealing with the simple partials on a very daily basis. A trip to Ohio was becoming a very real possibility. We were fearful for her future and her present.  Epilepsy can be frustrating.

When we finally reached our point of seizure control (in 2014!), we stepped back from all of our advocacy work, and from epilepsy in general, in order to catch our breath.  We needed privacy and time to sort it all out.  And we needed time to rest our weary and battered bodies, because epilepsy can exhaust you.

Today, we are well beyond our one year anniversary of 100%, total, complete seizure control.  Her last tonic clonic was medically induced in February, 2011; her last complex partial was related to her hospital admission, and was also in February, 2011;  and her last definite simple partial was in March of 2014.  Her service dog has been retired, she has her driver's license, we made it through a dosage decrease without any seizures, and she is beginning to enjoy her life.

Despite all of that, we have decided that it's time to re-enter the ring and rejoin the world of advocacy, because epilepsy knows no boundaries and will continue to impact the lives of millions of people.  Won't you please join us in our efforts to bring epilepsy out of the shadows?

With love,