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I thought I had posted everything I’d written thus far, but when I went to post this, I found that there was a draft which I’d written several months ago and failed to post.  I posted that entry just a few minutes ago.   If you’re reading this all at once, remember that my scenes jump back and forth in time somewhat.  The stroke was in October, 2014, and now it is February, 2016.


Recreative Suffering

One of our family secrets that came out when I was well into my adult years was that one of my uncles, whom we nieces had long had the sense to stay away from, had a woman on the side. When my mother finally told the story, she moaned, “How could he do that to Alice?” Alice was my aunt, my father’s sister, and Muriel was Aunt Alice’s home health aide.   “Here she’s hired to be there for Alice, and she goes and betrays her.”

We’ll never know whether Alice sensed what was going on, because she has long since passed away. Alice suffered short-term memory loss following a brain hemorrhage that almost killed her. She survived a good thirty years after her hemorrhage. The lively woman she had been beforehand never reappeared again, but still, a vow is a vow, and a person is a person, my mother and I thought. Maybe I had no pity for my uncle because I had seen some of his unsavory side. I certainly avoided being touched by him.

I’ve heard people on radio talk shows defending this behavior – not touching minors in private places behavior, but that of partners of disabled persons who seek companionship or sexual gratification outside of their partner, who is unable to give it. “Those left behind by their partners also have needs,” they say. “They shouldn’t be deprived.” Well, I thought, my uncle ought to be deprived of this Muriel and more.

Now that something similar has happened to Michael, I can well imagine what it must have felt like for Alice. Even if you can’t remember things, you can feel what’s going on. One can have memory impairment and still be very sensitive to what is going on at the moment. People with memory loss can also feel other losses as they occur or during the unexpected moments when their memories are triggered. We’re only kidding ourselves if we think our partners are oblivious to what is going on around them.

I sometimes feel needy for Michael’s affection. I remember times he used to stroke my hair or hold me, times we had sex, and there is an ache, sometimes sharp, sometimes dull.

At other times I stagger, as with a blow to my shoulder, by memories of things we did together. Today I remembered driving with Michael down some German Autobahn or other, on our way to having a good time together, listening to classical music on the radio or an audio book. We enjoyed each other’s company all the time, also on the way to wherever we were going.

There’s a stretch of highway that goes from Cologne to well into eastern Germany. “It’s almost all forest from here to Erfurt,” he said. He enjoyed that stretch. Once or twice we stopped at an outlet store on the way and bought clothing. I can see his driving style, quick, even jerky, confident, in a rush, but competent. “Rub my neck,” he says, and sighs contentedly as I rub the stiffness out of his neck.

And now I long to remember, to dredge up all the memories, to feel their vividness, even as they seem to fade away. I want to write it all down, to not forget anything, for they are all I have right now of the man I lived with for thirty years.

Would I want to run into someone else’s arms for sex or companionship? No way! Part of what pricks my memories now is the knowledge that I was ignorant of my blessings, all the while I was being blessed. I sat in the car and enjoyed Michael’s comments, the easy flow of conversation, but I don’t remember any gilded awareness of this being anything special. I found it awkward trying to massage his neck from my passenger seat. I enjoyed sex, and then enjoyed sleeping afterwards, cuddling into him, all the while wishing he’d reach out for me more often.

My brother told me the other day, “I can’t imagine the suffering you must be going through.” I agreed with him that I suffer. Then I thought to myself afterward, But I do get through the days, don’t I? My life is interesting, even now. So how exactly am I suffering this loss?

I feel it is important to record it, to examine it, not to forget that this man whom I married over thirty years ago is the person I miss, not just some general companionship or the feeling of being sexually aroused. For me what counts is the person behind it all.

The way I deal with this, what I try and do is, not to run away from the suffering, but rather to remember what we had and feel the goodness of it. As I look, I see what we had in a different light. In a way, my memories are recreating the past, making beautiful what were sometimes mundane scenes. They modify and make mellow the painful scenes, of which there were also plenty. But I’m seeing even the painful times through a different lens, and that is a good, heartening process that makes me feel good.

So the suffering has lots of goodness in it. It’s helping me to appreciate, to understand, to value.

Sometimes I am rewarded in the present tense. Yes, Michael is in some ways a different person right now than he was before. But he still looks at me and knows I am his Schöne. There are times when I go to visit him and he is alert. In fact, the good days are so frequent now that even his bad days are fantastic, compared to what they were a year ago. There is hope. I doubt he’ll ever be driving the car again, but maybe one day we’ll be sitting in the car again, on our way somewhere. Then I can ask him to rub my neck!

About a week ago I visited him and his hands leapt up into the air in a greeting of exultation. I had forgotten that gesture. How good to get it back! I remembered the words he always said. At the time, it exasperated me. He was always excited to see me, but his greeting just wasn’t like in the movies. No slow, dreamy, romantic soft gliding of his hands. With Michael it was abrupt. But now that it had come back, I treasured it. Then he reached for me. I bent down and he kissed me eagerly on the lips. His eyes looked hungry for more. He is also needy for companionship, I realized.   He tried to pull me to him with his stiff arm and claw-like hand, bent with contractures. He stroked my hair. Before long, it felt like all my hair was in my eyes, but Michael was stroking it! A year ago he lay rigidly in his minimally conscious state. Now he was patting/stroking my shoulder. I stroked his arms, his face, careful not to lean into him too closely to restrict his breathing. His shirt was moist with secretions from his trach. No matter. We were sharing affection. We still love each other, after all these years. I love him in a deeper way than I ever loved him in the past.

Those moments are so wonderful, I almost think they’re worth the suffering.