As already mentioned, an event of this catastrophic level has a way of forever changing relationships. As we got into our routine at home it began to dawn on us how very much things had changed. Decisions either of us might make for ourselves had an impact on the other in much more obvious ways. It wasn’t long before Strokeman began to worry that I wanted to leave him. He asked to have our pastors over to talk to us, and voiced the concern that I might feel trapped. Well yes, boy howdy, I did feel trapped in a horrible nightmare. Given the choice, I would certainly have exited this scene. I didn’t want to be tired all the time, I didn’t want to have to die to self every minute of every day. I didn’t know how to deal with the anger I felt that Strokeman seemed determined not to become independent, and not to allow anyone but me to be his caretaker. Having said all that, what I didn’t want to do was leave my husband. I wanted him back, I wanted him better, but I didn’t want him gone.
The pastors were able to listen to our concerns and then voiced their own. I was a bit taken aback at how defensive they were of me. They expressed their concern not that I would leave, but that Strokeman would end up killing me by not seeing to my needs. They made several very good suggestions of how he might be able to make my load easier. I affirmed to him that I had no desire to leave him, only to be able to get some help caring for him. And nothing really changed.
The tireder I got, the more I felt like he was sucking the marrow right out of my bones, the more shrill my voice got, the more irritated my attitude was at him. When I would express things I wanted him to try or think about – in my not so civil voice – he would shut down. He wouldn’t try, he wouldn’t speak. He was obsessed with the fear that the children (who were rarely at home) might hear us arguing. I honestly didn’t care. I felt like it would be nice if SOMEONE were listening to me.
Back came a pastor. And again we talked about whether I was wanting out of the marriage. I tried in my company voice to express the things that were becoming so frustrating to me. Pastor Steve asked Strokeman to express his complaints, and he said, “I don’t want to complain, my wife is taking very good care of me.”
I lunged for him and grabbed his neck with both hands. Steve would not accept that as an answer, and Strokeman slowly began to unload all the ugliness that I had piled on him from my hateful desperate heart. No wonder he thought I wanted to leave. What in my actions and attitude had expressed anything different?And yet, even as I heard my faults being listed, I was relieved to finally hear something being said. Yes! I wanted to say, I am being this horrible person, somebody help me break the cycle!
The summary of that session was that Strokeman was to try harder to be more independent. That he needed to be looking for ways to make my life easier. And I was to work at approaching every situation calmly and unemotionally. Ha! I am not sure which of us had the harder task here. Strokeman’s brain damage had severely effected his ability to trouble shoot, which meant that his idea of making my life easier often resulted in more work for me. I have never done anything unemotionally, but I did work on the calmly part. It did occur to me that while discussing things in a calm and unemotional manner rarely resulted in change, the same could be said about when I approached in a non-calm and emotional way. At least this way my head didn’t hurt all the time.
Meanwhile, I read a book on being a caregiving wife, and I began to face up to the fact that I needed to quit banging my head against the looking-for-that-miracle-that-will-bring-my-husband back wall.
One day after a particularly discouraging session with a health practitioner that Strokeman had decided not to go back to, I told him I was done trying to make him do anything he didn’t want to do. I also told him I would be hiring a sitter to come stay with him once a week for 8 hours, and that I was going to make plans to go to our daughter-in-law’s doctoral graduation in Florida. He said he was willing to try it. I told him I was glad he was willing, but that I didn’t think I was going to give him a choice on this one. To my relief and satisfaction, I was able to carry on this entire conversation calmly and (outwardly) unemotionally. He still shut down, but hey, I was calm.
After several weeks of having a wonderful sitter come to stay with Strokeman, I made plans to do an overnight trip in order to give us all a “dry run” before the two day trip to Florida. I had talked about it all in passing, to Strokeman, around Strokeman and definitely in his hearing. But one day he told me he wanted to talk about this trip that I had told him nothing about. Calmly, I reminded him where I would be going, who I would be staying with, why I was going, and what the end goal was. He grumbled a little bit more and then got quiet. I looked at him and said, “Do you think I am having an affair?” “Well,” he said, “I have seen this behavior before and it makes me very suspicious!” (For the record, the previous behavior he was referring to was not my own – he’d seen it, alright, but not in me).
The first thing that went through my head was kind of like that song in Fiddler on the Roof when Tevye asked his wife, “Do you love me?” and she proceeds to list all she has done for this man for the past 25 years. I thought of everything I had done for Strokeman, all the ways I had proven my love, and I was insulted that he would accuse me of unfaithfulness.
The second thing that went through my head (after the exhausting list of all I had done for this man) was the ever present sarcasm, “Yes of course, because after a day of having you demand things from me I want to go spend time with some other man that wants something from me!”
The third thing that went through my head was the implication that he saw my relationship with Christ to be some kind of a grand farce. Even if he thought I didn’t love him any more, how could he think I would sin against God in this way?
Calmly, I told Strokeman that I was not having an affair, and had even been mindful of not doing anything that would give anyone the impression that I was less than committed to him as I went about my life having to attend functions without him, interact with various service providers he would have ordinarily dealt with, etc. I pointed out that since I had hired the sitter he had begun to be up and about more, that he was more independent, and that I was able to get a break that I very much needed. I told him that I did not think it was in his best interest or mine for him to depend on me for everything. I said my piece, he kept his peace.
The day I left for my trip, I went and looked him in the eye, and said, “I love only you!” He responded by apologizing for having accused me of adultery. I forgave him, but I still went on my trip. It is easy for me to second guess every decision I make that requires me to choose something he doesn’t like. I did think about abandoning the plan. I began to wonder if I was being selfish, if he had a right to feel neglected. Did other people think I was being mean to leave him alone with a sitter? When I begin to worry about these things I make myself look down the seemingly endless corridor of our lives. It could be a long time, folks. What I do today needs to serve us both for the long run. I have come to believe that preservation of my energy and his independence are vital to our longevity. I have found that when I have some time away to visit with friends, run errands, turn the volume up on the music, smack my gum, etc, I can come back and be something more than just a caretaker.
I have made it part of my daily routine to look for ways to affirm to Strokeman that I love him. I try to find time to just sit and talk with him, watch a movie with him, joke with him. I try to be affectionate with him. Honestly, some days it is a difficult task. So often I feel the disappointment of him choosing his own comfort over what would be best for me. My tendency is to withdraw and put a little distance between me and the hurt. But I know that love is not a feeling. It is an action. It is a decision to do good for and to someone, whether or not they are doing good for and to me. My Father in heaven loves me in spite of my daily infractions towards Him. My brain, compared to His, is desperately marred. My understanding is so limited that I often do things to “help” Him that are foolish and sinful. Even when I do the right things, I do it for personal gain or self glory. Sometimes I accuse Him of having abandoned me. And yet, He loves me with an everlasting love. He has given the sacrifice of His only begotten Son to make it possible for me to come to Him and cry, “Abba! Daddy!” What right do I have to withhold my love from anyone? This man I am married to was, and is, a good gift from the Father of good gifts. God give me strength to set my heart on him every day.