To say you’re going to lose your way of life is to say you’re going to lose what helps you make sense of the world. Think about it. “My way.” The “my” is the individual who uses his or her agency to construct a method, an algorithm of sorts, to make it from morning to night and achieve something. If I do this, this, and that, I’ll achieve what I want. If I (1) get up, (2) take a shower and get dressed, (3) eat breakfast to give me energy for the day, (4) take the bus to school, and (5) go to classes and pay attention, I’ll achieve the goal of learning something.
There’s also the “way” of “my way.” That’s everything else that helps the individual execute the algorithm. You need a home in which to sleep well, someone to produce the food for you and get it to your plate, a public or private mode of transportation, a school and teachers.
So when you say you’re going to lose your way of life, at least looking at it positively (a way of life can be destructive), you stand to lose everything that helps you become a human being, that helps you conceptualize a life worth living, that helps you see beauty in life. It’s crazy scary, the kind of scary that sucks the air out of your lungs in an instant, that makes your heart skip a beat or two. You fear. You freeze. Your sense of agency disappears. What are you going to do, especially if you’re a kid?
Especially if you’re a kid like Nick with his severe physical limitations? To really get how scary it is, you have to get “granular,” you have to break down in much more detail each part of the algorithm. I’m a quad like Nick but I don’t come close to having his limitations. Earlier in the book, I described a component of my algorithm, getting dressed. I free fall into a chair. Then comes the underwear (sorry, yeah, TMI). Then the pants. Then my socks, which alone takes up to five minutes. Then strapping on each leg brace. Then putting my footwear over the brace. Then putting my shirt on and using what’s called a “buttoner” to button my shirt. Then standing to pull everything up and finishing that part of the algorithm. This could take up to twenty-five minutes or maybe more. And if I stand up and realize I put on my underwear backwards? Start over. I feel really stupid when that happens.
Now can you imagine how much harder it is for Nick, a guy who can’t touch his feet with his hands? How incredibly granular each part of his algorithm is? In Nick’s case, it was his dad that took every opportunity to push his son towards as much independence as possible, to help Nick construct his “way of life.” One of Nick’s vivid memories, one that he has shared with many people, was when as a kid, about four or five years old, he woke up one summer morning excited that he would get to swim later in the day. He called his dad into the bedroom.
“Are you ready for a swim, Nicholas?”
“Heck, yeah, dad!”
“Alright, then.” His dad tossed Nick’s swim suit at him, walked out of the room, and closed the door.
“What? Dad! . . .Dad!” No answer.
Nick laid there, not knowing what to do. He cried. He screamed. The door remained closed. Nick eventually realized that if he wanted to go swimming, he would have to put on the swim suit himself. He wrestled and wiggled for what seemed an eternity. He eventually got it on.
“Dad! I got it on!” Nick shouted triumphantly. His dad walked in, extremely proud of his son but intent on not making the situation a big deal.
“Okay, then, let’s go.”