Thursday, November 4, 2010

Thankful? Um, OK

You have no idea what it's like.

Every day, coming down the stairs, wondering if your partner is awake, asleep, or unconscious.

Some days are 'good', days in which he laughs and makes you laugh, silly things you say to each other, keeping it going. He has a whole 'cow conspiracy' theory, now, that cows are plotting to take over the world. They have lookouts. They are opposed to the horses, but sometimes use them as decoys. They gather around the phone lines, making calls to other groups gathered around other phone lines, communicating in vastly stealthy ways that humans never seem to notice. His mind had always been very creative; he should have been the writer, not me. The things he has come up with in the past have kept me thoughtful, inspired me, kept me laughing.

We haven't slept together in years, because we can't. He has to sleep in a "V" position; sharply done. He can only sleep on his back. He slept in a recliner the first two years; I bought him a bed that has that 'memory foam' in it, that raises head and feet like a hospital bed. It's the only way he can sleep. I have my own room upstairs, with a pillowtop queen size mattress where I sleep - usually on my side, stretched out.

He always was a little OCD; concentrated so hard on what he was doing that he could not notice any distractions. It's why he was a helluva firefighter as well as a paramedic; no one and nothing would change his thought processes and actions. Now, though, the OCD is pronounced; to complete a task - ANY task - he has to concentrate fully on it, or he wanders away and forgets. His palm pilot has lists on top of lists on top of lists. Not only does he write down 'mow the yard' but he also writes down "pick up limbs" , "check the gas in the mower", "Check the mower tires", "empty the bag into the compost pile". He is still creative - in a determined sort of way. He keeps track of every different bread recipe he tries or changes, even down to the length of knead time, how much extra flour he uses, etc.

When we sat in front of the lawyer for the last time, he told us that the medics and attorneys for Workers' Comp had given him an approximate death date. In other words, based on his type of injuries and surgeries, as well as the following medications that he would be on 'for the rest of his life' - they had stamped him with an expected expiration date. Most people in his situation rot away quickly, emotionally and physically; stop taking their meds, stop going to the docs, stop wanting to live. It's why they didn't want to promise him his retirement payments, and why Social Security fought so hard against giving him back the money he put in for years - they were waiting for him to die. Of course they'd have to pay his spouse much less.

The drugs made him vicious and violent at first, then they made him forget... forget the past 20 years of marriage, forget the feelings he had as both a man and a husband. Those were hard times at first - like having someone who loves you and whom you love suddenly get Altzheimers, the vicious cruel kind of mindlessness. He didn't understand the people around him any more. He didn't understand the traffic whizzing by him when he drove. He didn't understand stores and clerks and the people with whom he used to interact every day. They spoke a different language, had a different thought process, ran around and over him as if he didn't exist any more, which added to his confusion. This frightened him, and the fear made him angry, lash out, violent. Because I knew that this was not him, was just the fear, the pain, the confusion that overwhelmed him, I put up with the violence - even when it was turned on me. I fled when I had to, to save my life - but I always came back, because I knew he was not really abusive. This new person was not the man I married, but was a desperate, confused stranger in pain, who needed someone to protect him.

So now we are where there are almost no people. Where those who do live around us are easy to remember; names, faces, habits - because there are so few of them. He knows the chickens and the cows and the horse and the dogs because he interacts with them every day, all day. His woodworking shop and small engine repair shop are his refuge; where he can think carefully about projects, and do them incrementally until he gets them perfect, with no one to disturb his thoughts. Where food and weather are the main topics of conversation in the house. Where he can plan a whole Halloween or Christmas decoration extravaganza weeks in advance without being interrupted. Where his hours in front of the TV or the computer are mindless escapes from his ever-present pain and his few 'responsibilities'.

From a deeply passionate, loving, demonstrative marriage we have settled into a comfortable caretaker/patient existence; still mutually dependent, but differently. Like a steadily dripping waterfall, we have worn a groove into the rock of our marriage, and it is a comfortable if uneventful trap. Emotions aren't permitted, they cause upset and aren't worth the trouble. No pressure to perform, unless you count that the cows need food occasionally in a blizzard, or that the wind whips around the house and peels the occasional piece off and has to be repaired. All is quiet; the long days and nights silently blending into one another. He has outlived his "expiration date", and continues to do so, unmolested and uneventfully.

2 comments:

Mad Hatter said...

Wow WC, you spell out a lot of what I was going through back when I suffered the stroke. I got better, but I wonder if/when it will happen again. I have no answers, I really don’t. All I can do or say is wow…

WileyCoyote said...

Yep... I know that you thought no one knew, but yes, my dear, I DID know... from the other side of the fence. Every anguished thought and word you wrote, I knew...
There ARE no answers. We are who we are and we do what we have to, to survive. There is nothing else. It sounds like it is all just really sad and tragic, but only if you have that attitude. We - survive. And sometimes we still can - and do - laugh uproariously! Life sux - all we can do is make the most of it.