Sunday, June 24, 2012


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.


  1. Ah. Thank you. I understand now. How horribly difficult for both of you, but you know something I've learned (and perhaps you have too since it sounds as if you have a medical background) is that it is often just as hard for the one who has to watch as it is for the one who has the infirmity. A couple of years ago, I was very ill and taking chemo. Once, I lashed out at my partner, told her that she had NO IDEA how dreadful I felt. She replied that all she knew was that her heart was breaking from having to watch me in so much pain. I tried to be kinder after that. I'm so sorry that you were left in such limbo after your partner died. You are a lovely writer, though. Generous to your audience and true speaking. I hope you never stop.

  2. Thank you Maria. Your thoughtfulness and compassion means more than you know.