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.  

Tired

“Only in the darkness can you see the stars.”

(Martin Luther King Jr.)

Tired.

That sums it up . . . I am tired.  After several weeks of short nights dealing with our son’s seizures . . . I am tired.  After several days of having to leave work early to deal or son’s seizures . . . I am tired.  After sitting in the hospital emergency for several hours dealing with doctors about our son’s seizures . . . I am tired.  I am tired of the sleepless nights . . . the frightening screams . . . the seizure wracking paralyze . . . the sympathy of medical people who have no answers . . . have no cures.  I am tired of this nightmare that never seems to end after more than nineteen years.  Yeah, think that sums it up . . . I am tired.  It never changes.

A friend of mine calls it SSDD . . . Same Sh**Different Day.  At least that is what she posted on her Facebook page this evening when she shared the news about her daughter’s appointment at a regional hospital with specialists to deal with a chronic condition.  The news was not good . . . basically the daughter was told that there was nothing that could be done at this time . . . told that she had already been seen by the best and if they couldn’t help, why in the world did she think that they (the new medical team) could . . . basically she was told to grin and bear it . . . nothing was going to change.  It really was not the news that she or her family or friends wanted to hear.  Kind of took the hope right out of that last balloon that they had found.  It sucked . . . and, from the post on Facebook, I think they are all tired.

Chronic illnesses and conditions are tiresome.  Tiresome for the person having to endure them . . . tiresome for the people who love and take care of them.  It is not good for people to get tired.  When people get tired they easily get frustrated . . . they easily anger . . . they easily give up hope.  Giving up hope is the worse.  When hope is gone . . . what else is there?

I feel for my friend, her daughter, and all those who have been circling their lives with prayer and hope . . . and, now they are tired.  They prayed . . . but did not receive the healing, cure, or even a reduction in pain.  They sought expert opinion . . . and the medical experts had no answers or solutions.  They felt patronized as they left the hospital and wished “good luck” . . . and like they were saying, “Don’t let the door hit you in the butt when you leave.”  Chronic illness is a tiresome roller coaster and now they feel as if they derailed.  Knowing this friend, there was resignation in her post . . . there was tiredness . . . a loss of hope.

Yes, I feel for my friend.  I know what she feels because I too have been tired and hopeless . . . just like now.  I have watched my number three child, my number two son, deal with this crippling disability for nearly nineteen years.  I have witnessed how the Epilepsy has robbed him of a normal life.  I have seen how it has made him a social outcast and ignored or even spurned by a lot of the world around him . . . seen as valueless.  I have sat beside him as he cried and mourned that his life was not like all the other people who were his age . . . cried and mourned that he cannot see a life like his siblings in the future . . . a wife, children.  I have seen him get up for new treatments, and I have seen him blown out of the water when they produced nothing but wasted time.  Up the roller coaster, down the roller coaster . . . off the tracks . . . get up and do it again.  It is tiresome.

I have often wondered about whether or not there is some hidden limit on how many times a person can go up and down this emotional roller coaster before enough is enough.  Is it a couple of times?  Is it a thousand times?  A million?  Well, I imagine that our son, my wife, family, and I have hit those peaks a couple of times . . . and, what do others tell us . . . hang in there . . . it will get better . . . we are praying for you.  Nice platitudes, but it does nothing to ease the tiredness . . . nothing to restore the hope.

Anyone who deals with a chronic illness or disabilities knows the routine well . . . anyone who loves and cares for a person with a chronic illness or disability knows the routines well . . . up and down, all around, and do it all over again . . . over and over.  They know all the pat answers . . . all the nice words of comfort . . . all the routines of those around them who cannot help.  They have been angry at God . . . angry at the doctors . . . angry at each other . . . and, just plain angry.  God doesn’t seem to care or help . . . doctors “practice” medicine and really are only guessing at what might help . . . the world seems small and the people in it are irritating even though we love them . . . and, in the tiredness there is anger.  When the anger ends . . . hope is lost.

I have spent a life time on this roller coaster.  I have witnessed the lives of my two brothers who have disabilities . . . over fifty-some years now.  I have witnessed it in the life of my son as he battles Epilepsy.  I have seen it in the lives of the people I have served as a minister for over thirty-some years.  I have seen it in the lives of friends.  I have railed against God . . . and, I have railed with God.  I have cried with loved ones . . . and I have yelled at loved ones.  I have been angry at the world . . . and, angry with the world.  I have been tired . . . and, I have given up hope.

My mother lived a hard life.  She understood that life is not easy . . . that life is difficult.  She struggled with me through some difficult times in my life.  I will always remember her words to me in those times of struggle . . . “This too shall pass.” 

“This too shall pass.”

She was right.  When it was darkest . . . the stars came out.  Here in Montana I only have to step out on the back porch and look to the heavens to see millions upon millions of stars piercing the darkness.  Surprisingly, I find hope there in the darkness as the stars sparkle in the sky.  There is hope . . . there is always hope.  Tonight, before I go to bed, I will step out onto the porch, look to the heavens, and survey the vastness of God’s glorious touch to witness the stars.  I will breathe deeply of the cool nighttime air . . . close my eyes . . . and whisper, “Okay, God . . . one more time.”  Then tomorrow I will get up and do it all over again.  Yeah, my friend calls it SSDD . . . maybe it is the thin thread of hope . . . the spark to start the fire going one more time.  I don’t know . . .

To my friend . . . to all those who carry this weight . . . I know your pain, your tiredness, your hopelessness.  I also know, that you have seen the stars and that there is always hope.  It may not seem like it right at this moment . . . but this too will pass.  No, not the chronic illness or disability, but this feeling of hopelessness.   Those stars that pierce the darkness are symbolic of the gifts of God’s presence that pierce the darkness of this roller coaster journey.  They are all around . . . they may not know what to say or do . . . but they care and surround all of us with their love and prayers.  They pierce the darkness of our world.  There is hope . . . always hope.  I know that you, my friend, will get up and do it all over again.  Why? Because we care . . . because we love . . . and, because we do have hope.  God hasn’t abandon us, so why should we abandon God?

Yeah, I am tired . . . but “this too shall pass.”

Hope . . . what a strange and terrifying trip!

Hulking Out

I probably did not react in the best manner . . . duh!

Coming in the front door of the house I was greeted by one son holding a rag to his bleeding head, the other son over by the stove in the kitchen sweeping the glass up off the floor.  Behind the son sweeping the floor was the busted glass front of the stove.  Zero to sixty in seconds flat!  That is how I reacted . . . I lost it . . . I was angry.  Angry over what, I wasn’t sure, but I was sure I was angry.  I blew up and, I blew it.

It has been said that we save the best . . . and, the worse . . . for those we love the most.  I won’t disagree with that statement one bit.  Whenever anyone I love—family or friend—is threatened or hurt, I Incredible Hulk out.  I go on the attack . . . I am ready for a fight . . . ready to hurt whoever or whatever it is that has hurt my loved one.  I shoot first and ask questions later.  Not the best response mechanism . . . especially plays havoc on one’s blood pressure, but I have been that way all of my life.  Seeing the scene . . . I Hulked out.  For better or worse, I got angry.

Anger . . . yeah, there was yelling.  Anger . . . there was stomping around.  Anger . . . there were profane words thrown out.  Anger . . . and, there was some more yelling.  Of course, none of this helps the situation.  The situation was that the younger son, who has Epilepsy, was rounding the corner in the kitchen, by the stove, had a seizure, fell down, hit the glass in the stove door (the whole front of the oven is glass), and shattered it all.  He scraped his head (thus the rag over the head), cut his elbow, but was okay otherwise . . . oh sure, he was upset and frustrated, but he was okay.  The other son was being helpful, had helped his brother, and was cleaning up the mess.  Of course, the anger I was exhibiting was not actually helping . . . no one was being protected, no one was being rescued . . . it was pure unadulterated angry . . . a regular ol’ hissy fit!

In the process of un-Hulking, a myriad of emotions, feelings, and thoughts go through my rock garden of a mind . . . primarily how stupidly I had acted or reacted . . . embarrassed more or less . . . and, remorseful.  When everyone, my children, needed the best, they got the worse . . . and, yeah, I love them to the bottom of my heart and beyond.  Reconciliation was necessary and needed . . .

. . . so, I apologized.

I was not angry at my sons . . . I wanted to protect them from what hideous thing it was that had threatened them.  I was relieved that no one was hurt any worse than they were . . . it could have been worse.  I was not angry that the stove door now was broken and needed to be replaced at several hundreds of dollars . . . stove doors are cheap in comparison of replacing a child or a relationship with a child.  But, I had been angry.  Before I could apologize I had to know and understand the source of my anger.

The family, more the wife and I, have been dealing with our son’s Epilepsy for over 18 long years.  We have endured countless sleepless nights . . . more visits to hospital emergency rooms than we can count.  We have watched this disability wrack our son’s body and life for years and years.  We have witnessed numerous IV lines shoved into his arm . . . endured every drug he has taken to combat the Epilepsy . . . and, helpless stood by and watched as they cut open his head, messed around his brain, and sewed him up.  We have stood by our son as he was bullied through school, ignored by teachers who were ignorant of the disability, forgotten by those who should care, and given the run around by countless organizations designated to help.  And . . . nothing has changed in over 18 years.

The form of Epilepsy our son suffers from is a cruel form . . . a silent culprit that shows no rhyme or reason to its activity.  Someone once asked me to describe what it was like . . . all I could say is that it was like someone sneaking up behind you with a baseball bat and hitting you in the head when you least expect it.  Knocking you flat.  Depending on which medical expert you want to quote, the cause of Epilepsy is unknown in 70 to 90 percent of the cases . . . our son’s is in that “unknown” category.  Yet, one has to grasp for whatever hope there is whether it is 30 percent or ten percent.  After 18 years of treatment nothing has changed . . . despite the huge amount of money that we have spent . . . despite countless doctors and experts . . . despite every conceivable drug . . . neurological surgery . . . counseling.  It has been a long, frustrating journey . . . and, we have not even begun to see the end.

What broke the dam?  What brought on the flood of anger?  Hmmmm . . . I wonder . . . maybe countless years of frustration.  Frustration that goes beyond my own son’s Epilepsy . . . frustration of having two brothers with disabilities as I grew up . . . frustration of having to relive all the problems again . . . with no solutions, no answers.  My brothers are both still alive, living productive lives . . . but my sister has sacrificially taken care of them for years as I have never lived close to my family since graduating from high school.  I stand in amazement and awe of her ability to do it.  I was angry, and my anger was at the Epilepsy.  A never-ending curse upon our lives.

As Christians we are urged by popular thought to think and believe that God does not give us any more than we can handle in life . . . phfttt!  That is nonsense.  I think God would even agree . . . sometimes life is just more than any of us can handle.  I don’t blame God.  First of all, God did not do this.  Secondly, the wife and I have not committed some terrible sin that has brought this upon us or our son.  It is not God’s fault, nor is it our fault.  These were just the cards that we were dealt . . . and, these are the cards we have to play.  As much as it sucks . . . well, it sucks.

I have never pulled a Job on God.  I have never ranted and raved at God as to why this was happening to any of us.  As I said, God didn’t do it.  It is just what it is.  We—the wife and I—have never blamed God.  But, God has caught our anger . . . and, God understands our anger.  God understands because it angers God, too.  The problem is that I don’t like the fact that there are no answers . . . I don’t like that there is no pill that cures the disability . . . I don’t like that my son has to struggle so hard every day just to have a so-called normal day that the rest of us take for granted . . . I don’t like the way that people treat my son and have exiled him to the borders of life and society . . . it sucks and it make me angry.

And, so, I went to apologize.  First, to the son with Epilepsy.  I explained that I was not mad at him . . . poop happens and we are fairly used to it happening with the Epilepsy.  I explained that I was not mad about the stove door . . . hey, what is a couple of hundred dollars when we know that he was okay.  And, I admitted that I screwed up, wanted to protect him from the enemy . . . but, because there was no enemy to attack, the worse was dumped on him and his brother.  I was so, so sorry.

Then, I went and apologized to his brother.  These two have a difficult “love/hate” relationship . . . at times there is no love lost between them.  I explained the same things to him . . . apologized profusely.  This is the son, who over the last couple of months hasn’t been the most loving towards his brother (and vice-a-versa), came to his brother’s need . . . helped him, cared for him, and cleaned up his brother’s mess.  He lived what he always proclaims, “Family comes first.”  I was proud of him . . . and, proud of his brother for letting him help when he needed someone.

The Hulk has crawled back into that deep, dark place to hide . . . to hide the next time I perceive a threat to those I love.  I hope the Hulk stays there for awhile . . . I don’t enjoy the Hulk when he appears in my form.  And, the weird thing, which is what stresses the Hulk so much (I think), is that the whole time it is happening we both know how helpless we are in stopping it.  We just lose it . . . right or wrong.

I am not alone . . . I know that.  I have known that since I was a small child.  There are many others who deal with the disabilities of their children . . . and, their own disabilities.  There are others who don’t understand the question of why . . . nor the silence that answers their questions.  Others who suffer for their children . . .

No, I am not alone . . . but so often it feels as if I am.  Forgotten.  Ignored.  And, that too, is a part of the anger.  God understands and weeps with me.  Yeah, I did not react in the best manner, but I reacted in a very human manner . . . those who love me understand even if I, myself, don’t.  For that I am thankful for the love and grace of family.