Jan's Story by Barry Petersen Page A

questions and the shot. As I asked the first question, the cameraman stopped me. The eye contact was wrong because the person was looking at the translator and not at me. We asked him to look at me.
    I started again. The sound man stopped me. There was a problem with the audio. I blew up. I screamed and lashed out with a rash of obscenities. Get it damn right, what kind of professionals are you, I can't focus if you keep interrupting me, can't you do your jobs?
    Then, with much effort, I tamped down the rage, and we started again. Later, as we drove away, I fumbled out an apology. Stress, maybe I hadn't slept that well. Frankly, whatever I said was lame. What could I tell them? My life is now all about rage?
    The people with whom I worked became wary around me, cautious lest I blow up over something. And they had no idea what it would be next. I didn't blame them. Even I became wary around me. The rage was so easily triggered because it had no real target, and there was never absolution. I couldn't be angry with Jan. She didn't cause this. What use was it to be angry with God? I couldn't call Him out and have a decent fistfight, and punish Him for what he'd done to my Jan, who didn't deserve this. How could I ever exorcise this rage from my system?
    Like most caregivers, I thought I was alone. It wasn't until I got a note from a friend whose wife was also slipping away from Early Onset Alzheimer's and was relieved to find another person caught up these emotions. There was kinship in that. Rage, it seemed, was contagious. I wasn't alone after all. Part of his note:
      “We continue to slide slowly downhill—she in her ability to speak and do even the simplest of chores, me in my ability to control my temper. I never turn it on her, but all it takes is a broken shoe lace, and I go ballistic.”
    When I was on the road, there was the unending worry about making sure she was safe. Especially with cooking or, more precisely, using the stove. Cooking had always been her therapy, and it hurt to think about taking this away from her. In the old days, before she got sick, I remember how she wanted to teach me how to cook, so sure she was that I would be able to learn. I would laugh and tell her that she was such a master, it was like Picasso telling Mrs. Picasso that he could teach her how to paint, it being so easy and all for him.
    She was still shopping and cooking for us when we were in Tokyo, and I considered that a good sign. But there were more occasions when she brought dinner to the table and left the stovetop burner on high heat. I got into the habit of checking the burners, which I then considered problem solved. But what about when I was on the road? Simple. I would just call and ask about the stove. Problem solved. But, of course, it was only solved in my mind because she could have hung up the phone and headed straight for the stove. It would not occur to her to tell me that the stove was on.
    When I told people about Jan's diagnosis, I saw fear in their eyes, the fear of the words “Alzheimer's Disease.” There is a natural, human terror of The Disease. Other illnesses may take away some of our abilities, and the effects of other diseases can often be seen. Not The Disease. It takes what we have all had since birth, the mind and its memories, and our ability to talk, dream, and imagine. I cannot fathom what it is like, even now, except the raw fear that it will happen to me.
    And when we see the person who looks as Jan does, still beautiful and bubbly, we want to reject that she is ill in any way.
    I know this rejection well because I did exactly the same thing. I would delude myself with daydreams that there might, one day, be another moment as defining as the moment when I knew we would always be together. In my daydream, Jan would suddenly get well after some miraculous medical advance, and then this nightmare would end. And (in this improbable, but constant, daydream) after this