Sunday, June 24, 2012

unpacking

The problem is that I haven't yet gotten home.

I'm dreadfully homesick for a home I've never known. I've caught a glimpse once or twice...

Could explain why  I never unpack. I always feel as though I'm a visitor, a guest in my own house - some times welcome and some times not. I've lived in this house for nearly 10 years and there are still boxes left unpacked. 


There are so many boxes I've left behind. So many boxes lost in my absence - including a cedar chest big enough for a man to crawl inside. My great grandfather, Papa, made it for me when I was a child. No one seems to have ever known what happened to it after I left home. I've never understood how something that damn big could simply disappear! I know it can't and that someone knows what happened to it and that knowledge makes me angry. 


He had epilepsy (my husband, not my Papa.) Epilepsy is really just a very non-specific diagnosis they assign to people who have recurrent seizures. They never knew what caused his seizures. He said it could have been his mother trying to abort him. She said it could have been the forceps used during his birth. They said it could have been triggered by adolescent drug use. The initial ER even said it might be a vitamin deficiency.


He was 17 when he had his first witnessed seizure. I hadn't yet left and was about to be 16. He was hanging out with some guys, jamming out in someone's basement. He was playing guitar and suddenly they thought he was being electrocuted. 


Nobody thought an MRI was a good idea. Or a neurologist. 

His mother wasn't living at home then. She had moved out and left him living with her ex-girlfriend.

He was pissed at me for dating someone else instead of him.

I left, unable to choose that date or time myself and unable to say goodbye.

Everyone was pissed at me.

Someone told him not long after that I had died, committed suicide. I remember being angry he had believed it.

By that point two years had passed. He told me the seizures had continued, that he was on medicine and it controlled it, mostly. He told me it was no big deal.

I knew he missed work sometimes because of it.

We had been living together for a few days before I ever saw him have a seizure. He was standing there talking to me and all of a sudden, with no warning at all, he went stiff as a board, his eyes rolled back in his head and fell backwards and to the left. His entire body was convulsing before he hit the floor. His muscles were tense, filled with the strength of ten men and every single one of them were violently shaking, forcing his body into the fetal position. His teeth clenched tight, the saliva forced it's way past them in wet bursts. His whole body grew clammy as his face and neck and upper torso became an ashen gray, his face turning a horrifying shade of blue. They tell you not to restrain someone having a seizure because they can hurt themselves. They can also hurt themselves by violently bouncing off every piece of furniture and wall in a room. The convulsions could sometimes last as long as 6 or 7 minutes.

I was terrified. I thought he was going to die.

He gradually grew still and then took a few ragged, agonal breaths.

"My God," I remember thinking. "How on earth can a human body survive such torture?"

Since that time I've seen some pretty heart-wrenching stuff - folks dying beneath my hands, even as I forced O2 into their lungs, trying to maintain C-Spine and keep a tight seal while avoiding the crackly section of bone that used to be the left side facial side of her skull, her amputated limb riding in the stairwell - the boy crushed by the tractor - the woman with 3rd degree burns over 90% of her body who still screamed before losing consciousness - the man who's heart had simply stopped beating. I've seen countless of the newly dead and bodies that have been found after many days and remains that have been found after years.

I have still never seen anything as terrifying, as absolutely horrifying, as him having a seizure. Incidentally, the last time I saw him his body was fully clenched in "seizure position," his skin mottled and gray, his lifeless eyes staring up at me from the morgue table.

It took him most of the afternoon to come back around to the point we could have any sort of conversation. That's when he told me that he knew it was going to kill him but that he had come to accept that.

What the hell??? Why in hell would you accept that? And how can you be so nonchalant and simply assume I would?

He said that he didn't have them frequently as long as he took his medicine. But he also thought if he went a full week without having one he was doing good and he certainly wasn't very faithful in taking his medicine. He claimed he didn't take it because it made him feel like shit and it didn't work anyway.

I claimed that 3-5 severe tonic-clonic seizures a month were entirely too many and that surely there was another course of treatment that could better manage his condition.

It took nearly a year for him to agree to go to a neurologist instead of the general practice doc that just kept upping the dose of Dilantin. During that time he would go for weeks at a time having 3-5 seizures a week. That's when we learned that most neurologists wouldn't see a 20 year old kid with no job and no medical insurance. It's hard to keep a job when you're either having a seizure, about to have a seizure or recovering from a seizure. 

Through it all he insisted it didn't matter what we did, it didn't matter whether or not he drank or took his medicine or drove - it was going to kill him and it would do so by the time he was 25.

I accused him of wanting it to kill him, of being weak and taking the easy way out. I told him he could simply choose to live and take his medicine and not drink so much and at least not drive the day after a drinking binge, knowing that was when he was more likely to have a seizure.

He didn't argue with me. He admitted that he wanted to die, that he was looking forward to it. He couldn't understand why that bothered me, why I thought that was so incredibly selfish of him, why I took that as him not loving me, not loving his son, not loving our family. He couldn't understand why I felt so totally alone.

I spent nearly five years trying to catch him before he fell, wedging myself between him and the furniture, trying to use a pillow to cushion the blows. I cried for days at a time as the seizures wreaked havoc with his personality and the depression enveloped him, robbing me of the man who had been my best friend, my husband.

The new medicine helped. Tremendously. I don't care how good the medicine is though - you have to take it for it to work. I also don't care how good the medicine is - if you have epilepsy and you drink a large amount of alcohol, you WILL have a seizure.

He wasn't concerned about the consequences. What did it matter, it was going to kill him by the time he was 25 anyway. All that mattered was right now.

BUT WE SHOULD MATTER!! It doesn't have to be this way! You could be happier and healthier and live as long as you want...this isn't a damn death sentence and right now isn't that fucking great with you having seizures all over the damn place and feeling like shit from having seizures all over the place and me raising hell because you didn't take your medicine or drank a fucking 12-pack which made you seize all over the place.

Asshole. Some people have to learn the hard way and unfortunately, everyone around them gets hurt in the process. I will never know if he really did see a premonition of his death or if he simply willed it to be. I have found it very hard to forgive him for his cruelty. I have had an even harder time forgiving him for making our lives so much harder than they needed to be.

I'm not sure I will ever fully heal from the wounds caused by his lack of concern for the consequences of his actions.

Tuesday, June 19, 2012

truth and lies

I don't really need to spend a lot of time dealing with how it feels to not have gotten to say goodbye to him and to not have been there to stop him from drowning. I've pretty much dealt with all that. It sucks, but it is what it is and there's not much I can do about it now. 

I did however, discover during my mulling that there are still a lot of things I feel I should say to him.

Most of them stem from a very bitter, angry place. This is why I do not like for them to see the light of day. I am ashamed of such thoughts. Ashamed that I could be so selfish as to think of his life and death as my personal tragedy. 

Ashamed that I can still be so damn angry with him. And angry that I should feel so angry.

I always complain that he made life difficult with his constant reminders that he was going to die before he turned 25. 

I rarely include how angry I still am at him for promising me happily ever after, for making me believe - before taking it all away. 

He wooed me and wowed me and made me believe that he loved me and wanted to be with me forever, that we could have our happily ever after.

Then life got hard. The seizures grew worse, I got pregnant, he announced he wouldn't live to 25, we both got scared. 

Once when I was several months pregnant and bitching that he couldn't hardly drink a fifth of liquor and not expect to have a seizure, he announced that he wasn't sure if he was really in love with me or not. 

I was devastated. I felt crushed by the weight of our responsibility and felt as though he were leaving me to deal with it all on my own. 

He married me six months later and showered me for a bit with love and affection, but there was always a sadness in his eyes, a heaviness in his heart - the weight of which he never hesitated to share with me. 

I had a hard time believing him after that. There was no happy ever after. He was going to die and he was okay with that, he looked forward to it. 

For some reason he thought I would be okay with that. 

He told me once that it never occurred to him that I might need his help because I always seemed to have everything together and was so independent. I tried to tell him it was all just a show. 

He claimed The Boy and I were the only things that brought him happiness, the only things that even came close to make life worth living. But he was still going to die by the age of 25 and he was ok with that, he damn near begged for it. 

He didn't get why I took it so personally. 

He didn't have an expiration date or anything. It's not like he had some sort of progressive disease that we all knew would steadily deteriorate until he died. No, he had a controllable condition. One that he refused to control, despite the fact that he KNEW his decisions were causing it to spin horribly out of control. Despite the fact that he KNEW we were the ones who would be left to pick up the pieces when it all came crushing down. Despite the fact that he had promised me forever, promised me happily ever after.He was my best friend. I had trusted him. 

"You can't do this to us. You promised us happily ever after and now you're telling me that we're not going to get it because this life is too fucking hard for you to deal with, because it's too fucking hard for you to do the right thing?! You can't do this. You can't remind me daily of how you don't matter because you're going to be dead anyway and expect me to be ok with that. You can't be happy with that knowledge also knowing how much it destroys me to think about losing you. You can't expect us to sit here and watch you choose death over us and be happy about it. You can't expect us to sit here and watch you self-destruct, a product of your own self-hate and self-pity. You have no right to make us watch you drown in your own misery. 

It wasn't until after I left that you thought we were worth fighting for and even then you had to hit rock bottom first. We wasted 4-6 months of our lives together all because you refused to even try to want to live, to try to fight. Because it was just too fucking hard. 

I've spent a lot of time being pissed off at myself for that wasted time, but I guess it's been too easy for me to accept the brunt of that burden. In reality, you were just as much at fault. I may have left but you certainly pushed.

There are times I think you did it in an attempt to save me. And others when I believe you did it to punish me. 

I made you promise not to die doing something stupid so that I wouldn't hate you forever. You cleaned up your act right before you died. The marriage counselor hadn't been fooled, but I was. You were taking your medicine. At least I couldn't hate you for dying. 

But part of me will always believe you killed yourself, same as though you had committed suicide. 

The fact that it wasn't suicide just means that you didn't leave a fucking note, which really pisses me off. 

I remember us talking about it one night - so strange how it was a part of so many casual conversations. You made it clear what you wanted, how you expected me to carry on. I made you promise to haunt me - to stick around until you were certain I would be ok. I think you've done that. 

But you never said goodbye. You tried to prepare me - made me absolutely fucking miserable reminding me so often, but you tried to prepare me. You told me things you thought I needed to know. It's getting hard to remember some of them - conversations held years and years ago, late at night while everyone else slept.

But you never said goodbye. And then you left me here, to bear the weight of our responsibility alone, without you. 

But you never said goodbye. Instead your lips brushed my ear when the magistrate said "til death do you part" and you murmured softly "not even death."

How dare you make me watch you drown, even if you at least tried to make sure I didn't have a front row seat. 

You never said goodbye. 

And I was left picking up the pieces of your broken promise. It's exhausting to be that damn angry. 

It's absolutely maddening to see your son make many of the same type of self-destructive choices. And it's just as much a crushing heartache when he lies to me, when he breaks his promises. 

You're not here to make him understand and that pisses me off too. 

Thursday, June 7, 2012

fester

It's all there, lurking just beneath the surface.

When I begin to pull the bandages back, carefully pulling away the new, delicate skin, I realize it's a festering mess.

Tears well up and I want to cry...or scream...or vomit.

Wednesday, June 6, 2012

mulling and murmuring

I've started speaking with a grief counselor.

12 years later and I decide it's time to see someone.

I've come to grips with it, mostly. On an intellectual level, mostly.

My heart is still broken, clumsily glued back together. It's mending but there's some sort of block - or perhaps a vital missing piece. I know it's always going to hurt. There's simply no fixing that. But I think there is supposed to be a better balance. I know there is a God and that He takes care of me. I see proof of that everywhere. I am constantly reminded that I am not alone in this life. And I am abundantly aware that forever is a really long time, especially when all we can touch is right now, this very moment.

Most of my moments these days are great. But they are still tinged with sadness. Because every moment of every day, with every breath, my heart aches for those I've loved. And those I've lost.

The very depth of that pain is proof of love's existence and eternity.

That should give be reason to celebrate, I have been blessed to know love like that, to know that love will never leave me. But every moment of every day, I am painfully aware of its absence.

I want to find a better balance. I know there has to be one. I am running on the assumption that there is still one more lesson I have yet to learn from it all.

There's always one more surgery, one more lesson. I'm ready to enjoy much more of my life so I've asked for the help of a tutor, a grief counselor named Mike.

I think he will be able to help. He already has. He assures me I'm not crazy. And that I haven't failed.

Even the Fine Young Man reminded me recently that it's all in how you finish.

So I'm looking to finish strong. Joyfully.

I told Mike that I have a really hard time talking about things. It's much easier for me to write.

He asked if I needed to mull over why I don't like to cry in front of people. No need, that's simple. I will forever hear my Daddy's voice, "Why in the hell are you crying? I'll give you something to cry about." And I will forever feel myself screaming silently, "Fuck you. You will not break me. I will not let you see me cry." Crying makes you vulnerable. I don't want to be vulnerable.

Apparently it's a prerequisite.

Yea, I am much better at writing it down, all alone.

So I asked Mike to give me prompts and let me write my way through it. My first one? A letter to Him. I've written more than a few, but this one has a specific focus. I am supposed to zoom in on how it feels to not have gotten to say goodbye to Him and how it feels to not have been there to stop him from drowning.

He wants me to really give it some thought, to mull it over a bit. We've decided I'm a master muller. Well, I decided anyway. But I don't think he disagreed.

I guess the biggest thing so far is that he gives me permission. Permission to mull, to listen to those murmurs. With that permission I'm assuming comes permission to schedule my mulling time, permission to not let mulling and murmuring consume every moment of every day.