The following was taken from notes I made when I went on a trip with my brother Michael. I got permission from his group home manager to accompany him on a vacation with other clients from group homes in his area. We were going from Queens, New York to somewhere in Pennsylvania. Documenting the trip with film and video was a big motivating factor, I must admit.
June 29, 1996
Spoke to W_ at Mike’s home. Meet tomorrow morning at the house. Spent the day preparing.
June 30, 1996 PM
Where do I even begin. It started at about 8:00 AM when I went to catch a cab in the rain. As I write this, I’m sitting in the bed in which I’m supposed to sleep. Mike is in the next bed laughing. I would really rather be somewhere else.
This morning started like the morning of that disastrous hike for which I was recruited at the last minute by my friends in high school. I was a last minute pick because B_, who was supposed to go, came down with schizophrenia. We were going to hike 80 miles and got soaked on the first day. At least we had the sense to abort it. Good thing too. I bought my hiking boots the day before and probably would have gotten gangrene if the weather was good.
The van ride from Mike’s house was pleasant enough, even though the heat was blasting. We got to where the tour bus was picking us up an hour early. My bags were overstuffed and awkwardly packed. I kept all my camera equipment in the seat with me. I had a headache.
Once on the Fun Time Vacation tour bus, N_, a client, made her presence known. She was nasty. She said she was mad, said she was having a bad time and wanted to die. She screamed during the entire trip.
Mike had fun eating the sandwiches I prepared. He had this habit of flinging the left over food over his shoulder.
I wore my contact lenses. Without my glasses, somehow I felt more like Michael. In the bus, Mike touched my scalp (where I have no hair), then touched his own head. He did this several times. Maybe he thinks we’re alike too. One of the other clients said we look very similar. She didn’t know we were brothers until I said so. Mike was the lowest functioning one in the group. Another client told me how sad she was for Mike because he couldn’t talk.
Mike peed in his pants as soon as we got in the room. I had to clean it up, find out if there was a clothes washer, smell the smell. Y_ from Mike’s home assured me that he didn’t wet himself. Maybe he just gets that warm feeling when he’s around me. I wondered when he would have to take a crap.
Michael loves food, especially other people’s food. I had to stand guard in the cafeteria, festooned with all my camera equipment. I felt a bit scattered. Finally S_, one of the counselors said he would watch Mike while I got a some food of my own. S_ was a man who, if dressed in a white coat, would look like the one who makes you take your medicine when you don’t want to. He said that Mike has to be given limits. I had to laugh. Mike’s whole table looked like an aerial view of a golf course construction site.
After dinner Mike wanted to walk. He wanted to get into the nearest car, and every one thereafter along our path. My arms hurt: one from holding Mike’s hand, the other from filming him with the video camera.
I just discovered that I am expected to take total care of Michael. I don’t know what he is supposed to eat, how to give him a shower, what the signs are that he had to go to the bathroom.
I am not prepared.