Ten years ago, I thought I had everything I could ever want. Happy spouse, happy home. Suddenly, on one strange morning, the unthinkable happened. My happy spouse stopped speaking. He still breathed, but he stopped moving, he stopped working, he stopped being himself. In his place was someone I could not recognize. That person had empty eyes, and a blank face. There was only his familiar body here. Something had gone seriously wrong with him very quickly.
For an hour, I watched and waited. Food and drink went untouched, he stared at the wall. Finally, I called my family doctor. Though I was supposed to drive him to the hospital, I could not make him move. His hand remained in air if I lifted it. Something was horribly wrong. Frantic now, I called for help, and the puzzled medics asked about drug use. I went from frantic to angry to frantic again. As the ambulance pulled away, I could not imagine what illness had these bizarre symptoms. I came along to the hospital as quickly as I could, having to find a sitter for my three youngest daughters. By the time I got there thirty minutes later, they were waiting. “Please, come here,” the nurse beckoned. She led me to the little waiting room, the tiny one where they take you when it is death or the next-worst news. I could barely breathe. He was forty years old, and my whole world. What was happening here?
It took weeks to diagnose, but what happened was the very sudden onset of a mental illness called schizo-affective disorder, flat affect. What it meant to me was, my husband as I knew him was gone. His mind was on an inner journey to places only he knew. For the next year, he would blankly stare at people, no matter what they said or did. He would stare at one spot for hours. The year after that he spent his time talking to me, even though I wasn’t there. He took many kinds of medications, still the nurses on his ward would report long conversations with a hallucination. If he talked to the real me at all, it was to beg me to let him come home—an impossibility according to his doctor. Eventually—after many, many rounds of medications, and shock therapy—in the third year, he began to speak to real people, and appeared to know there was the real world most people lived in.
He came back to our home almost every weekend for two years after that, but the simple everyday activities in our home overwhelmed him. He rarely stayed more than a few hours each day. His doctor determined he needed to live in a small apartment on his own, trying to go back into this real world.
Finally, six months after he left the care center and moved out on his own, his body lost the battle to live, largely because he could not care for it, and would not allow anyone else close enough to discover he had a life-threatening infection. He was found unconscious on the floor of his room, and died two days later, never knowing everyone who loved him was with him at the end.
For me, at first I thought his death meant I could finally bury the man who “died” six years before that. Though I had tried every day to find ways to keep loving him, I felt I had been a widow without a body to bury for all this time. While he lived in one world, I was in another. Mine was struggling to raise five daughters, the youngest of them only nine when her dad stopped being Daddy, fourteen when his body died. It was making the mortgage payments alone, and working two jobs. He was part of my life, but not the center anymore, at least not until I knew I was losing him forever. It struck me as I planned the funeral I had never felt so alone in my life, though I had been living with his memory more than him for the past few years.
One afternoon, about a year after he had died, I was cleaning a storage area that was long overdue for cleaning. I opened a shoe box, and out fell scraps of paper, covered in a familiar handwriting—his of course.
I began to read them. I was hoping they were notes to me, something he had left to recognize our love. But they were only random words. “Life,” “car,” “milk,”—they made no sense to me, but must have meant something to him. He had saved them. I turned the two dozen or so papers over, and they had been written on receipts. Some were from the two years he had struggled to live again, but a few were from the four years he had lived in his world of mystery. As I dug deeper in the box, names began to appear: his mother, our kids, my name—mine written over and over, as many as forty or fifty times on a scrap of paper six inches long. Where he had gotten these papers is a mystery. They came from places no one I knew shopped at, with random purchases. Some were old and faded, and wrinkled. I think he took them from trash cans. Finally, near the bottom of the box, my name and the word “help” appeared on the same paper. The next paper said “help me, help.” I thought they were cries from his world to mine, for me to help him. I did not, could not, know what those words meant but I kept them anyway. They were something from him.
A year or so later, looking through them as I prepared to move again, and he has been gone four years, I look at them with a new perspective. I wonder if they might be more than random words. Maybe they really are love letters. Maybe by writing words that were mundane and every day, he was trying to show me he could stay connected to my world.
I will never know the real story, but a romantic part of me thinks these were the best he could do to stay in touch with a love we had. They were the everyday things we shared. It was the words you would say as you walked out the door, “stop and grab milk.” “wash the car.” Looking at them from this point of view, they are tender sonnets indeed, and I will treasure them always, as love letters from his strange world.
What is love but the everyday, the sharing of lives, the little words that pass back and forth between people who are comfortable with each other? Somehow he had to know that and believe it, when he lost the ability to communicate love with passionate words. I do not have the notes anymore, another loss took them from me. But I have the memory of them and him, and I cannot look at simple words in the same way again. To me, every simple word is someone’s love story.