Here is a paragraph from the text that I just couldn't get out of my head:
"So why is epilepsy so devastating? For most parents it is not the physical challenges of epilepsy that are the problem – it is the emotional challenges. Seizures last minutes or less, but worry about the next seizure can last a lifetime. For most parents and older children, it is the daily, unrelenting worry about the next seizure and its imagined consequences that makes epilepsy so difficult. Epilepsy is not so much a physical disorder as it is a disorder of anticipation."
A disorder of anticipation.
If one were to just take the above sentence to deconstruct, it could take all day! All week! No, perhaps it could take years, especially if one didn't just study it, but lived it.
We just wrapped up the year with the holiday which broadcasts anticipation from the rooftops. Every single day, on every single calendar - be it an advent calendar or not- is pretty much a countdown to the Christmas holidays. This makes anticipation out to be a pretty cool thing, even a downright awesome thing with all the gilding of family love, joy, and peace, trallala lala la!
But man, the word disorder is such a downer!
Disorder, even without the word anticipation, already sets the scene for something that doesn't quite settle with us; the uneasy feeling of a empty darkened street, perhaps a bad dream that doesn't really go away with the rising sun.
I think perhaps this is the key, the main aspect of the landscape of epilepsy. When there are no seizures, unlike many other medical disorders or conditions, the child is perfectly well. Life goes on and everything can be normal.... except it can't. Because something happens to us after a scary seizure event (and they are all scary, regardless of how one tries to condition oneself) a dramatic shift in how we view the future, and how we view our lives.
Instead of a free flight, we now fly with the knowledge that at any moment in time, the drag anchor will appear on our backs and our forward moving flight will stop, sending us hurtling down to the jagged rocks (wether or not there are really jagged rocks to smash ourselves on, we have no idea, but we fear the unknown and uncontrolled).
In other words, the disordering of something inherently good, can be awfully traumatic.
I feel like this disorder of anticipation, though primarily belonging to the world of epilepsy, can also belong to a host of other conditions which involve any other trauma. The moment something bad happens to us, we make all these associations which later on will either help us avoid such an event again, or will inevitably turn into a festering fear. Fear which initially was programmed into our lizard brains as a helping tool to keep us alive, now instead, runs out of control like a panicked bull over the fragile grasses of the psyche.
Leo, my poor little soldier, carries not one, but two such disorders. Every day we live and survive through seizure after seizure, but incredibly, for most of his life, it has always been the shunt that prompted such unhealthy anticipation.
Because it never is a question of if a shunt will fail, but of when.
|Leo's not to thrilled about getting stuffed back into the MRI chute.|
When Leo was born, the trauma of epilepsy was still an unknown, but the hydrocephalus a true and stark reality. I had, stupidly, assumed that the hydro would be our biggest hurdle, once it became apparent that Leo wasn't going to expire past his estimated sell-by date. And it was that way for a while, that is, until his first seizure at four months old. Epilepsy however, still seemed like a smaller hill compared to the Hydro Everest. Six years later, eight surgeries in the bag, literally countless tests and scans, and medications, I would say we no longer are dealing with a little hill and a big hill, I would describe the scenery as the Himalayan range instead. Of course, it is also a bit of the chicken and the egg scenario too, though clearly the hydro was a catalyst to Leo's severe epilepsy.
The problem lately has been, which egg comes from which chicken?
As Leo's mom and Phd. expert in all matters dealing and pertaining to him, it is my job to label the mountains or eggs or chickens whatever the heck they are and to see that they get properly hiked, scrambled, or fried etc without breaking either his brain or mine.
Going back to the disorder, and to explain my deep frustration, Leo has been suffering from severe episodes in which he becomes very distressed from what I can only guess is a monumental headache which then resolves only after vomiting and sleeping for several hours. These attacks can come on at any point of the day or night and are very scary and yup, very very disorderly!
Last week Leo spent a day at the hospital getting the shunt checked out, because anytime there is head pain and vomiting the usual suspects have to be checked out. But it never seems to be the usual suspects in Leo's case. Never ever! It always the most rarest and basically unheard of side effect or cause. Take the infamous case of the collapsing lung, for example.
Anyway as I'm sure you can imagine it wasn't a very jolly Christmas here in the lion cub's den. We tried to rally and managed to spend time with extended family and attend some of the holiday church services, but it was an effort and the negative anticipation was hard to choke down along with the holiday one.
Leo as always, shines and smiles, even when he is seizing or in blinding pain, he tries his best to just be a kid.
(This year he got a gift which combines three of his very most favorite things together in one miraculous package: trains, bubbles, and blinky lights. Whoever invented this toy must have had Leo in mind. )
It's embarrassing, humbling, and heartbreaking sometimes how much better he is at being human than me. And he's the one with the actual disorder!
So anyway, as it stands right now, the doctors (not I, but it's their say that matters) have ruled out the shunt, and now waver in the possible medication side-effect or natural occurrence of migraine land.. in other words, they are out of ideas and are hoping for the tried and tested method of ignoring the problem to make it go away. I've even been feverishly researching on my own everything from GI issues to barometric pressure sensitivities as possible culprits for his recent issues. So far, no answers, but just more questions.
|Leo is really good at being the attentive parishioner during sermons.|
But there you have it. I suppose it's not about sense, or practicality, or finding just the right cocktail to make life better or make order out of the disorder. It's probably much simpler. Just love. Just be kind. And somehow the disorder becomes transformed into something completely different. Don't ask me what, I have no idea, but someday I will.