Control, Or Lack Thereof

 Entry 2     12:03

Jenny's way of telling me she is working toward making peace with this, was forwarding this e-mail she sent to Abby's school counselor this morning:

"In the next few weeks we have to have the conversation about stopping chemo. Our girls do not know this yet. I so desperately wanted to make it through her high school years so I am trying to deal with my heart break before I bring it more on my girls. I will keep you updated.   Thanks for checking."

This is so terrible, and each moment harder. That notice to the school counselor may just be like trying to see how it fits, if she can make that decision. I have taken the next two days off, was off the last two days, and hope I can get my shit together before Monday, to continue working to preserve my ability to take leave when this ends.


My hope that she is working toward acceptance doesn't mean I have accepted this, nor that she has really wrapped her head around it and made a decision. It may sound like that above, but I know her, she hasn't made up her mind. I want her to make choices on her own, without anyone pointing in a given direction, that will end her suffering. Both for my belief that agency is the most important part of our inner-selves, and that is should be the last thing you have to surrender, I will not talk about what I think she should do with her. Some people are talking to her like she is 3. She isn't. She gets to decide. That is my message to her sisters this weekend. I am firm on this. We have all told her these decisions are up to her, but we have to mean it. She eventually gave up on driving some weeks ago, and I did not pressure her. I told her I wouldn't ride with her, her friends told her the same, as did the kids. I was prepared to tell her, and to actually follow through on calling the cops if she so much as climbed in the driver seat to back the car into the driveway. Even then, with the diminished capacity of being medicated, I wasn't going to stop her driving, I don't think. Faced with a clearly impaired Jenny, I may have been forced to eat my words. Facing a Jenny who may truly be too weak to safely go up and down the stairs may make me change my tune about allowing her to make the decision to use the stairs.  We will see. Everything is fucking gray. I like a Manichean world, even if I live in the subtlety of gray.

 Unless you are suicidal, and even then many don't really want to go, everyone is at one level or another terrified of leaving. I am terrified of leaving, but more terrified of the feel of the world for our family, when her absence is felt in every moment. 

 Entry 1    1:16 a.m.

So, here we are, barreling down the 10, well past Baker City, in the middle of the night and the headlights have failed. I have no idea why, nor any idea when the road will turn and I will fly off in to the desert. Whether we make it to Vegas, we will have gone through hell just to reach Hades. That is our life together right now. It ends one way, crashing into a concrete barrier on the end of a cul-de-sac on Destination Fucked Rd. I hate this life, the suffering she must endure, we her family endure. She is breathing heavy beside me. I haven't heard the sweet sound of someone lying next to me asleep in bed in 18 months. I only have a short time with Jenny now. She is a shell of the person I once knew, the triathlete, the social butterfly, the dedicated teacher, miracle worker and mother.

In this complicated story, how do I say goodbye? How do I understand this life and the loss we have all endured for so many months? My children have lost their mother. She is not capable of doing even the little things she could do for them just a few weeks ago. I lost my wife some years ago. the news came to me more slowly than it should have, and at the worst time. The affair and her refusal to consider my pain and end it, to stop hurting me is not easy to forget. Tuesday night, as she was sobbing and lamenting in therapy that I told her some time agony the legacy she is leaving me and the kids is that she found someone more important to her than any of us, I felt no pangs of guilt for her being so upset by this. It is what I believe, what I know, what I feel. I didn't apologize or say, "that's not true." Because it is true, to the core. And still, I don't want to lose her, don't want Leiney and Abby not to have her. I don't want to see her go.

Today, I called Heather to tell her about the meeting. Heather fancies herself as some sort of care coordinator. When she and I have talked in the past, she has explained to me that Jenny has been very honest with her about her cares and concerns. The intended implication is that Jenny tells Heather things she doesn't tell me about what she is thinking about her health and the future. It may be true, but it is gross, self-serving and condescending (in a word, pretentious) which is how I have always viewed this woman' behavior.

So, as we were talking, and I  finished telling Heather about the meeting with Dr. B. and the inevitable outcome of this disease and  as she said to me, "Now that we are talking about this, I think it's a good time to bring up Sheila and Eric. Jenny would really like them to be here. I thought she meant Jenny would like them present as she was dying. I shot that down in 10000 words or less. 

I had a lot to say. It wasn't nice. I also made it clear my friends and family would not welcome them at any memorial. I also read her the riot act about people helping Jenny see him, that they were as responsible as he is for stealing time with Jenny from the kids. I said, I have been talking to each of them and letting them know I have no use for them. She offered that Jenny really wants Heather and others to take care of us after she is gone. Fat chance.

Heather clarified, that Jenny wants Sheila and Eric to visit at our home now. I rejected that option. I told her Eric is not welcome on my property now or ever. I pointed out that despite their professed love for each other, he has done nothing to care for her. Jack shit. Moreover, given that he was my kids PE teacher for years, they would not want him here, at all. Not now, not ever. Chutzpah.

I spoke with a friend who is therapist about Jenny wanting to see Eric as she gets closer to her demise. She asked me about what I would do when that time came. This was a month or two after I discovered the affair. I told her I wouldn't give in on this point, she thought I would. I won't. I can't. I know in my gut it is the right thing.

Having to think or worry about this shit as Jenny is dying is a lot. I may feel guilty when all is said and done, but I won't give in on this point. Actions have consequences. Jenny will have to bring them in against my wishes if she is to see them at all. I am not inviting vampires across the threshold of my home. Let them do their damage elsewhere.

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