Welcome to Big Old Goofy World . . . a place where I can share my thoughts, hopes, and dreams about this rock that we live on and call home.

Saturday, October 11, 2014

What I Hate

Hate is such a powerful word.

Hate is a word that the wife and I attempted to never use around our children as they were growing up . . . it was a word that we did not want them having in their vocabulary.  It was a word that was forbidden in our household and, if it was used by one of our children . . . we clarified what they meant when they were using that word.  We did this because more often than not they did not "hate” whatever or whoever they were ranting about . . . it was usually something else.  Most of the time is was because they had been hurt, not filled with hatred.

It is a word that should not be used lightly, thus I try really hard not to use it at all.  In all honesty I cannot think of anyone or anything that I “hate” . . . that includes politicians during an election year.  I can think of lots of things and people I do not “like”, but no one or nothing that I detest to the point of hating.  It is just too harsh of a word.  Makes me cringe whenever it slips over my lips and out into the world.  No sooner does it slip out that I regret ever uttering the word.

So . . . I have to also admit that there is something that I do “hate”.  I hate Epilepsy.  I hate the Epilepsy that my number three child has been inflicted with since he was around the age of seven.  I hate the Epilepsy that has wracked his body for years with seizures that can strike at any time and in any place.  I hate Epilepsy that has caused him to endure years and years of chemical restraints in the hope that the seizures can be controlled . . . chemical restraints that have beat his internal organs to a pulp over the years . . . and, yet, nothing works.  I hate Epilepsy for all the surgeries he has had to endure leaving scars on his head and body . . . surgeries that failed to make a difference other than to scar his body.  I hate Epilepsy for making him to unexpectedly fall down causing bruises on his body . . . causing him to have stitches to close wounds on his body . . . causing him to be hurt.  I hate Epilepsy because it has made his world so small . . . so lonely . . . I hate Epilepsy because there is nothing I can do or his mother can do, that anyone can do, to end this unpredictable madness and pain. It hurts to be a witness to such a disability on a daily basis.  It breaks my heart and makes me angry.  Angry because I feel so helpless in protecting my son.

I HATE Epilepsy.

For the most part . . . most of the time . . . I can pretty much contain my contempt and hatred for Epilepsy.  After a while you kind of get used to it and learn to roll with the punches.  But the truth is it is always there.  Today was just the straw that broke the camel’s back . . . and, the peculiar thing was I had a hunch something bad was going to happen.  I just felt it in my bones, but I played the odds.  Instead of staying home and waiting for something to happen I went about doing a few errands around town . . . probably was gone for less than twenty minutes; but, that was enough time for my son’s Epilepsy to rear its ugliness in his life.  He had a seizure while getting out of the shower, fell down, and hit his head on the toilet creating a huge welt and bruise by his left eye.  This was the eye that I hauled him to the emergency room a couple of week ago for stitches when he had a seizure and fell.  Luckily—this time at least—there were no cuts and blood to be cleaned up.  Outside of the bruise and swelling mostly his pride was hurt . . . and, as usual he was embarrassed and apologetic . . . always apologetic for something that he has no control over.

Finding him sitting in a chair with an ice pack on his eye when I got home . . . well, something snapped.  Something snapped deep down inside of me and overwhelmed me with a great anger . . . anger at the damn seizures that keep pounding his body . . . that keep pounding his soul.  Anger at the Epilepsy.  It was hate seeping—no, spewing out.  It was hate . . . not a strong dislike like when I have to eat some exotic vegetable the wife tells me I should try . . . but, hate.  If I could grab the Epilepsy that inflicts my son . . . grab it with my own two hands . . . I would beat it to death.  But, alas, I cannot . . . which makes me hate it that much more.

I guess this is my attempt to clarify that word “hate” since I have used it.  Like the wife and I tried to do with our kids.  Clarify what I am feeling.  I am feeling frustration and helplessness . . . there is not much that anyone can do but to be there for our son.  I am feeling anxiousness as the experiences of this day is usually a “marker” for the fact that our son is entering into a period of seizure activity that will keep everyone on their toes for the next couple of days.  I am feeling sadness in the fact that as a parent my gut instincts are to protect my child and there is not a thing that I can do to protect his short of wrapping him up in bubble wrap and tying him to his bed.  Sadness in having to witness the way that this disability has shrunk his world and made it such a lonely place.  Sadness for the way that people treat our son as if he has some sort of dreaded virus that will rub off on other people . . . thus, he is “hands off”, ignored, and treated as someone who is less than everyone else.  The last I knew, Epilepsy was not something that could rub off on other people like a common cold; but, you would not know that by the way people act around our son. 

As clarification of what I feel, I think that this probably only begins to scratch the surface of what is running through my mind and heart.  When all of this is stirred up—like it has been today—it is more than my mind or heart can handle.  The lid explodes off and the hatred comes spewing out . . . I hate Epilepsy.

My mother always told me “that this too shall pass.”  And, it will.  It will because I will scrape up all the remnants and shove them back down where they came from.  I will lock them up and sit on the lid.  I will ban the word “hate” when I talk about it . . . until the next time it becomes unbearable.

Thus ends the rant . . . the clarification.  Epilepsy is a nasty disability of which doctors and researchers estimate that the cause cannot be identified in at least 75 percent of the cases.  Some estimate that it is even higher.  Epilepsy is nasty as there is not any known cure or one way of treating it . . . it manifests itself in many different ways in people . . . it as unique as the people who live with it.  Some people get lucky, others not so much.  Some live normal (whatever that means) lives, while others become incapacitated with lots of folks in between the two.  Epilepsy is not one of the premiere disabilities or diseases that has the money pouring in for research, but it affects a heck of a lot more people than most of us realize.  Epilepsy is just a nasty condition and disability that screws up the lives of those who have it and those who love them.  There is nothing about Epilepsy that makes it even “likable” . . . it has earned its place in the Hall of Hatred.

And, there is nothing anyone can do . . . except what I try to do.  I pray for my son and all those who suffer from Epilepsy that they have a safe day.  I pray that if something happens there will be someone there to help if it is not me.  I work hard to be present for my son as he goes about his daily life, but I know that I cannot be there 24/7.  I pray that I can find the strength to continue to be a witness in what seems like a hellish way to live life . . . never knowing when a seizure might hit . . . never knowing it there will be an injury . . . just never knowing.  I pray that my son, and all those who suffer with Epilepsy, continue to have the hope that one day there will be a cure, that life won’t be so difficult, and that things will be so-called normal . . . and, if not, that they all make the best of it with the love and support of those who care for them.

For now, that is the best that any of us can do.  I love my son . . . but, I hate the Epilepsy that terrorizes his life . . . at least for today.  Hate is a pretty strong and powerful word, so is Epilepsy.  They deserve each other.  

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