A Guinea Pig and Mice

Since we've been through lots and lots of drugs it isn't often that Ces' doc will say, "Hey, there's a new one you really should consider trying."  She gave us a script for Fycompa and I had it filled.  But the bottle sat on the kitchen island for two weeks.  Cesare looked up the drug and its side effects (a first!).   Wow.  Just, wow.  We were both taken aback by the long list of possible psychiatric side effects: anger, irritability, hallucinations (of all sorts), suicidal and homicidal ideation.  Most meds have their lists..but I can't remember one that was this impressive.  So, the bottle sat.

I know it was only just approved by the FDA for use in the US and my pharmacist said Ces would be the first to try it in the area.  Hmmm.  A guinea pig.  Ces agreed to give it a go, and he took his first dose two weeks ago.  I've found myself watching him out of the corner of my eye, or worse dead on, waiting for...something.  I realize his head won't explode...but I'm searching him for signs of danger.  Ces is too.  I don't remember having an experience like this before with meds.  I don't know why I'm particularly paranoid about EVERYTHING he does...."hey, maybe that's the meds" ..."or that".  He reported one day feeling an unusual urge to act out at school.  He described it as an inflated ego "I felt so full of myself, like I could do and say whatever I wanted....be disrespectful or disruptive at school and I didn't care what anyone said about it!"  But, restraint carried the day.

Yesterday, my family awoke to gifts, tiny little gifts. Everywhere.  Well, everywhere we left an unwashed dish or a crumb.  Mice.  Now, I can handle seizures and calmly administer oxygen.  I can clean up dog vomit and watch seven seasons of Dexter but I quite simply cannot suffer mice.  My husband insists I am making it up but I swear to God that a mouse ran down my back when I was sleeping several years ago.  Once that happens, believe me when I say, you will never forget it.   I immediately rose to my toes, as if traversing a field of them.  Biting my fingertips and uttering fears of an apocalypse  two octaves higher than is really necessary in this sort of situation, I was inconsolable.  This is not me at my best.  My dear task oriented husband marched off to the hardware store, with his shield in hand and sword raised.  Ces saw him off, wishing him victory in his mice-capturing-apparatus quest.  Successful on his mission, my husband and Cesare did all but dig a moat at the entrance to our bedroom to protect me from what would surely be a stepped up attack against us last night.  I don't think it is foolish to believe, with certainty, that the successful travel down my spine had gotten around in the mice "community".  I imagined bets made that one or another brave mickey soldier could do it again...planting a victorious mini-rodent flag on my butt. 

Why is she talking about mice? I have every intention of bringing us back 'round to the Fycompa.  And it's this: Cesare was very different during this crisis, well, my crisis.  He was problem solving, creatively.   While his dad was at the hardware store, he made several trips to the basement.  First looking for holes that could have been entry points.  But then popping upstairs with a half dozen wild but possible solutions to capturing/killing the invaders.  Throughout the day yesterday and several times today I've witnessed Ces asking questions.  Lots of questions.  It's like his brain is stimulated.  

We increase the meds tonight: titrating up to a therapeutic dosage.  So far, no signs of scary psychiatric intrusions.  And, no sign of my demons last night.  But if I could build him a moat I would.   

"Where's he going?"

I hear this many times a week.  Cesare watches his twin glide out the door and turns to me, "Where's he going?".  Just answering him brings me to tears sometimes.  "Band practice, town to meet friends, the dance, the library, LaCrosse practice, Nick's house, the movies.   He has a date, a game, an interview, a college visit, a meeting, an errand to run, a life.  Cesare has none of those things.  He wants them very, very much. He should curse at the sky and shake his fist and scream that it isn't fair, that epilepsy has cursed him.  But he doesn't.  Cesare says, "Oh".  But I see the look, I see they way he settles a little deeper into the couch..preparing for a long night of Xbox or reruns of Buffy, the Vampire Slayer.  

Yesterday he saw his one and only, sometime, friend making out in the hall at school with a girl that shy Cesare has had his lonely eye on.  He was quite simply devastated.  He talked about it long into the night last night.  "Why not me?  What's wrong with me?".  That question and the answers we give our sweet children are not so different whether they are typical or special children.  But the reasons, the real reasons differ significantly.  Cesare spent so many years severely drugged that we refer to that period of time as "the coma".  He lost many years of trial and error and maturing in the ridiculously complicated world of growing up.  He approaches his peers the way one might have at age 14, but those peers are 17 and 18 now.  How do you make up for lost time?

I have exposed Ces to every opportunity that I have been able to dig up.  He has been in a number of "social groups" for teens.  This fall he said to me, "Mom, I don't want to only socialize with special ed kids anymore".  He had a point.  Ces falls into an atypical group.  He is not developmentally delayed and though he is frequently grouped with peers who have Aspergers, and that appeals to his intelligence, these are kids who are not likely to provide opportunities for him to practice social skills.  Currently he is in a speech group, made up chiefly of teens on the spectrum. Recently he eloquently described one young man as one who hasn't "learned how to gauge his listener.  He just keeps talking about his subject.  But his eyes never meet mine."

Thank God he has a twin.  Griffin provides normalcy for Ces as well as running commentary on what is cool and what is stupid.  "Not those socks, they're too high.  Don't say that...don't wipe your nose on your sleeve".  Higher learning.

"Where's he going?"  Griffin is going to college in five months.  Where are we going?

Transition....Transition! (Think Zero Mostel in "Fiddler on the Roof")

Dear Epilepsy,
I've recently been introduced to your cousin, Transition.  You know, the tall sort of imposing fellow?  He is a little hard to get to know, I have to be honest.  He seems to live a secret sort of life: very few parents in my position have become well acquainted with him.  Now, epilepsy, we've had our scuffles and we've learned to live together..begrudgingly.  But this Transition guy..he seems like nothing but trouble.  He is imposing all kinds of problems on our family.  Should we retain guardianship of our son when he turns 18 in six months?  Who will watch Cesare when my husband and I are at work?  Should he try to take a few courses at the local community college...without the one to one aide/nurse he has had for most of his compulsory education career?  Or should we engage one of the local agencies who propose to have him work in a supervised setting sorting recyclables with his regents diploma? I haven't gotten a single clear answer from him Ep.  And, not unlike other masked marauders, I always have to contact a third party to contact Transition...county agencies, state agencies local organizations.  They beam, like, a bat signal that is reflected off the night sky and within a day or two, your cousin shows up..mute...unshaven..rumpled like he's been out all night.  And then, Epilepsy, he has nothing to say for himself.  He speaks in catch phrases and rhetoric.  I'm learning to deal with you, Ep, but I can't wrap my mind around Transition.  Please tell me you don't have more relatives like this one that I have yet to encounter. 

Yours Truly,
Amy Kate

Chess

Cesare has been volunteering at the local library playing chess with children. I hang out..he's fine, but- what if?  I'm seated behind him, blending into the room.  A boy, maybe he's 10? just huffed away from Cesare complaining that he wasn't enough of a challenge.  Before the seizures and surgeries punished him, Ces had a 136 IQ.  I'd probably not be successful in my effort to blend in if I let myself cry right now...the pressure is pushing against my eyeballs.  And...I'd likely be booted out the door if I walked over to that 10 year old and said "IT'S THE EPILEPSY STUPID!" Right? I can dream though.

Who you callin' stupid?

Me.

Why is my sweet son Griffin seemingly reluctant to go off to college in the fall?  "It's the epilepsy, stupid".  Survivor guilt or he is worried about his twin, pick one.  Ambulance summoning seizures were part of Griffin's childhood.  Missing parents attending to Cesare's hospital stays.  I can see why he might be a little reticent to fly off from the nest.

Cesare is being awarded his high school diploma in June, so why does he walk around looking so daft?  I remember an interview with Susan Axelrod about this.  She is the founder of "The Cure" a foundation that awards grants to individuals who dream up new treatments for epilepsy.  She said she wished she could hang a sign on her daughter's back for those who would stare at her obviously slower gate that read something along the lines of "It's the epilepsy, stupid".  The medications are crippling.  But I need that sign too, sometimes.  I get frustrated with how long it sometimes takes Cesare to answer a question.  If I him ask what he'd like to do today, I need to pack a lunch. His processing is sooo slow.  Thank you medications, and thank you thousands of seizures.

I drift through my weekends with nothing to show for them when they are over.  I am directionless and very, very tired.  Why can't I be more productive? Work out, clean, hike, bike, take the boys to a museum or hell, a movie? "It's the epilepsy, stupid."  I need to monitor Cesare  at night.  He's a nocturnal seizer.  Sounds like a description from National Geographic.  He sometimes clusters at night and I need to give him Ativan to stop the clusters.  On a recent check in with his doc in New York she asked what I do at night when he's had a seizure.  I reluctantly shared my neurotic tendency to lay my hand on is chest and see if he's breathing.  "That's what you should be doing", she said.  So I nap a lot.

Not everything is about the epilepsy, but it sure seems like it.

Today I've made a decision.  I've decided I need to put words to paper.  I've written before, and I've blogged before but only about seminal events (or ovular events, if you will).  I blogged the happy occasion of my son's match with his service dog.  I blogged our memorable summer grasping at straws in California with a wise 96 year old osteopath who was said to have magic fingers: magic enough to stop some children's seizures.  Not magic enough to stop my son's.  

But it's the day to day living and surviving with epilepsy that confounds me, that drowns me.  It's the tumor-like tentacles that touch everything, everything.  Each of the relationships in my family has been affected: the dyads, the triads and the whole of the four of us.  Any family who lives with epilepsy understands the peculiar sanity in scouring the landscape on a remote trip into the wilderness to scope where a helicopter could land, you know,  if it needed to.  They understand the havoc epilepsy wreaks on a marriage.  The contorted way of parenting, ever weighing what fair is.  

Cesare (Chez' a ray) is 17.  He is the glass half full.   In his twelve years of epilepsy we have subjected him to treatments both traditional and non. Medications, diet, osteopathy, nerve stimulation and surgeries.  Oh, the surgeries.  They dot a landscape in my memory that is vast and arid and has the scent of stale coffee. Seven surgeries, seven day long vigils in a hospital waiting room.  Ces continues to seize most every day. He never complains or sinks into self pity. 

Cesare is more than his epilepsy.  But it's hard not to see 
everything cast is that shade.  His identity, his abilities, his daily routine.  
And mine.  

I am good at distraction, keeping in forward motion.  I'm very good at that.  I work with difficult adolescents in an Alternative School and when I am with them, I am wholly there. I see  more children in my private practice and am present for them as well.  I keep my mind stimulated by teaching college. I teach about the issues I am passionate about.  I teach students about the seeds of violence against women, which are right where we planted them..all around us. 

I will take a break from forward motion and allow myself to hover, be still.  I won't fall if I can write.  Thank you for catching my words.