During my daily visits to the hospital, in looking over some of the contacts I have made on Facebook in the Epilepsy corner, and there are several good groups, I was happy to share with my son some of the humor of his peers as they undergo the Video EEG Monitor all over the world.  We were unlucky for the first six days, we did not have a private room.  and boy could I tell stories.  HIPAA would roll over in the proverbial grave it should already reside in….But I was trying to make the best of a tough situation, and my son did it with more grace than I, those first few days.

Some have cute caps, bows and little hats over their heads as they begin the long process that can take 3 – 5 days, or longer, in bed, hooked up to a computer, on video tape.  The only thing you can do is get up for the bathroom from time to time once the technicians put in all the probes, wrap your head in gauze, and pull a cotton sheath over the wires and make a looooooong pony tail of those wires.  Then you wait.

Luckily, doctors can read the information on a daily basis, in real time now.  When we first experienced this, doctors discharged you, and then read the reports in real time, and you got the report months later.  Now you know results every 24 hours.

I showed my son these pictures from my laptop, and it overwhelmed him a little bit.  Where he is now, he has no access to the internet, and cannot connect with peers who may be experiencing the many effects and affects of severe Epilepsy; while I have been able to negotiate good groups all over the world.

He looked a little like he did when he was very tiny and I first showed him a new book, Lego set, or a brand new toy.

This is the reality of living in an institution.  No patients at his hospital are allowed internet, email, Skype and especially not Facebook (believe me I checked; it’s not just us).

We looked at children, teens and young adults who were talking about their experience of Video EEG Monitoring, and we could see, the truth, it is not a desirable time for those who suffer from Epilepsy.  I look forward to the day when my son can share on his own, his feelings about this, and his many other experiences, but for now, I put forward the reality.

Under the most uncomfortable circumstances for anyone, he did well.  He did real well.  And I am proud of him.  How many people could stay in the bed, all day and night?  For a whole week?

Yeah, there was a TV and a remote control, and a Harry Potter marathon (which made the weekend bearable), and pretty nice nurses, and a lot of decaf coffee, and even a couple of chocolate covered raisons, OH! and homemade suppers from Nana.  (Thank you Nana).  And even some really nice visits from some uncles who are beloved.

But in the end the reality is less overall seizures from last summer.  Good news!

I saw a beautiful young lady checking in today, and getting her probes put on.  She looked calm and a little bit anxious, and I wondered:  Who is she? Where does she live? Does she have family coming to visit? Surely the way she looked, and was dressed, she is not going ‘home’ to an institution.  Is she my son’s ‘peer’ in the Epilepsy/Traumatic Brain Injury Community?  Would she want to befriend someone like my son?  I walked on to get my son yet another cup of decaf, and just wondered.

What a mystery is Epilepsy.

On the very first visit to a pediatric Neurologist we had, back in 1996, the doctor said, and I will never forget it, the doctor said: “It is 1996; this is what we know.   Someday we will know more, let’s talk.”

So we gave the history, and so we continue the history. Brave souls emerge and enter here. Only the brave are allowed.

I am proud of my son.