My Vacation with Michael – Part 2
The following was taken from notes I made at the time of my outing with Michael. I got permission from his group home manager to accompany him on a vacation with other clients from group homes in the area. We went from Queens, NY to somewhere in Pennsylvania.
The Train Ride Back
July 1, 1996
Well, I couldn’t hack it. I am now on an $82 train ride back to New York with brother Mike (BM for short). At least he didn’t grace me with one of them (yet). I spoke to Y_ from Mike’s home and she asked if I was the one who decided to take Mike home. I assured her that every counselor I spoke with told me that the trip was probably not appropriate for Mike.
Now I know a teeny-weeny bit about how Mom must have felt. She had to be a saint. I couldn’t even tolerate one day, less than 24 hours. How in the world did she do it for 13 years!?! No way, no how.
Mike is happy now, on the train, smiling, petting me, barking, and hitting himself. He’s in hog heaven. The rest of the people on the train haven’t said anything to me yet. I catch a couple of sidelong glances when I look up.
I suppose this trip is a wake up call. I was making a lot of progress in my fantasy of Mike. This is a bit of the hard reality.
The baby album that my parents started when Mike was born ended abruptly. I understand why. I also understand why there didn’t seem to be any regrets. The phrase “hell on earth” comes to mind.
Life is better is in snap shots. Who can stand to live the in-between moments? It is hell on earth. What did they do before cameras?
Back on the Train…
A huge man and his young, equally huge son just walked past our seat with a tray of food. Mike perked up, like a chipmunk standing on his hind legs. Now, the aroma is wafting over. Thus far, Mike has only barked about a dozen times. Two nice little girls went to the snack bar a while ago to get me some cookies. I gave them a dollar each for their trouble. I hope Mike is quiet for the rest of the trip. I’m afraid to check him. God bless ‘Depends’.
[Not in my notes, but I remember that after the train ride Mike and I took a cab. I know this because I have the receipt pasted into my journal.]
In the Taxi
It was hot and muggy outside. Mike didn’t mind when I helped him take his jacket off. He doesn’t seem to care about much, except for food. All I had to eat today was a bowl of cereal and coffee and a banana for lunch and a cookie. I’m glad about the coffee. Now I’m just hungry, instead of hungry and nauseated and shaky from no coffee.
Now I’m sitting here holding Mike’s hand, like nothing has happened. It is warm. He’s just my traveling companion.
He’s leaned forward a couple of times. Does that mean he wants to go to the bathroom? I asked him, but he gave me no indication that he needed to go, at least I didn’t think so. I don’t want to know. But I don’t want him to be uncomfortable either. He didn’t have any trouble peeing in his pants before. Oh well, let’s look. WHEW! No drips, no runs, no errors.
1) I left my Prozac at home, didn’t have the sense to go back to get it and threw myself under the first Amtrak to come along, leaving Mike covered in crud.
2) Left Mike in the city on the return trip.
3) Mike got away from me and ended up with some kind souls who took care of him. He learned to talk and became a Pulitzer Prize winner.
Imaginary shrink visit:
Me: What was I expecting from my outing with Mike? I was not up to the challenge. There is not a little bit of humiliation involved here as well.
Doc: Say more about the humiliation. Why do you feel humiliated?
Me: Well, I’m not a good brother. I just want to take his picture and make believe that I am a good brother. Not true – I know I’m a good brother. But in a sense it is a failure to move in a forward direction in my relationship with Mike; a failure in the eyes of the counselors. They actually told me I gave it a yeoman’s try. Were they just being nice?
Returned Mike Home Successfully
I must have been agitated at the end. I felt so distracted. I couldn’t stuff another bit of information into my head. If I tried, it would just go out the overflow; I couldn’t process another thing.
The Next Day
July 2, 1996
I’m at the used bookstore on Crosby Street. Tired. Hot. Went to the East Side Diner for breakfast. I am thinking about a lot of things. “I am my brother’s keeper” was a phrase that went through my mind. Stupid. I just want to go to sleep.
I talked to Mom and Dad. I told them how much I respected them for having dealt with Mike at home for 13 years. I told them how I have a better appreciation for what they did after I was totally responsible for him. Trapped.
They both told me that they became acclimated to the home life with Michael. I asked them if they would go through that experience again. Dad said that he would. Mom said she couldn’t. They both seemed proud of me and glad that I decided to come back early. They were sorry that I had such a hard time.
July 5, 1996
At Carmine and Bleeker – Father Demo Square
It’s a beautiful day. The sun is warm on my face. I’m wearing the gray, straw fedora I bought in Tennessee, which Mike “reconditioned” in Pennsylvania. Why do I feel more like him now. Is it that I’m wearing my contact lenses, facing the world directly with no protective glass in the way? I know there are major differences between Mike and me. For instance, I know to brush my teeth with a toothbrush and not a hairbrush. I don’t know why it shocked me so much when Michael tried this. I suppose I thought that no matter what the outward manifestations of his autism are, he had it together internally. I must have believed that, only to have it proven wrong by his demonstration of total non-comprehension.
I thought I understood myself very well, but now I’m not so sure. I think that the trauma Mom and Dad experienced with Mike flipped some kind of psychological switch in me.
For years I dreamed of raising my own children. Maybe I knew subconsciously how hard it was for my parents and never wanted to be in their shoes. I know I was there at the time, but my fantasy life must have been rich. Perhaps my vacation with Michael was the reality check.
What a wonderful story and reflections. I too thought I would be “my sister’s keeper.” She is much higher functioning than Michael, and I knew I couldn’t do it at this later stage in my life. Thanks for sharing.
Thank you, Jill. It was a very intense experience. I remember it well, even without the aid of the videos and journals, which I am sure would fill in lost details. I should do that some day.