Why are your braces on the outside of your pants, I asked him when he drove himself into the garage onto the wheelchair lift. Why aren’t they underneath?
That’s how he put them on, he told me. He put them on over my pants.
Oh. Do you like them like that? Are they more comfortable?
No. Not at all. I prefer them the other way.
Why didn’t you say something? Why didn’t you tell him?
Because I can’t move. And I need him to take care of me. And I don’t want to get him mad.
I felt punched in the gut. Stabbed in the heart. All the clichés swooped down on me at once. I knelt on the floor next to him and said, You’re the boss. We are here for you, to make you comfortable. It’s your body. It’s your life. You need to tell us if something is wrong. You are in control of your body.
Even if I can’t move, he asked me? Even when I depend on everyone else?
Especially because you can’t move. We are your arms and your legs, but you are the brain, what controls our actions. Unless it is bad for your health, we will do whatever you ask. You cannot be afraid to ask.
Are you afraid to ask me, too? I asked him. Are you afraid to tell me to do something a different way or not at all? No he answered. Never.
But I wonder. I wonder if that’s true. He depends on me more than anyone. He depends on me for his every basic need. I know he’s not hesitant to ask for something, even two or three things at once, but I wonder if he’s nervous to ask me to not do something or to change the way I do something.
I saw him slightly wince yesterday, while I was getting him dressed. After I was finished, he said to me, you hurt me a little before, getting on my pants. Why didn’t you tell me? I asked him. Right there and then, why didn’t you tell me so I could know exactly what I did wrong and never do it again? It’s ok, he said. It doesn’t hurt much now. I didn’t want to make you feel bad, he said.
He didn’t want to make me feel bad for hurting him.
I felt that familiar anger bubbling to the surface. Followed by hate. For the circumstances that got him here. For the current situation. For the people along the way who made him feel as though he may be a burden.
For the overnight aide who complained that she had to get off her ass and off her phone and walk into his room each time he called because he couldn’t get comfortable himself, because he needed her to adjust his pillows or fix his legs or rub his ankles.
This had better be the last time you call me, she said to him that night. I’m done coming in here. I will call your mother down and she’ll be very angry.
She’s right. I would have been furious. But not with him. Never with him. When he told me the next day what happened, I made sure she didn’t come back again. It’s your job, I said to her. It’s why you’re here overnight, getting paid. If he calls you 50 times an hour you need to tend to him 50 times an hour. How is he going to get comfortable by himself with only one arm that works? He depends on you.
He can’t toss and turn. He can’t adjust his head pillow. He can’t do the things everyone else does in order to find that place, that comfortable place where sleep eventually comes. He can’t go to the bathroom without calling someone. He can’t pick up something that falls. He can’t survive without help.
What can it be like not to be able to move? Not to be able to do anything independently? To lie in the dark at night hoping someone is at the other end of the monitor, awake, in case he needs to pee, to move, to vomit, to scratch an itch, to turn over. Sometimes I think he calls excessively at night while heading off to slumber just to make sure someone is there. To make sure they hear him. Because he’s scared. He’s scared no one will answer.
Behind that smile, that good nature, that humor, are real fears of being alone. Of being a burden. Of being afraid to upset the caregivers lest the caregivers stop caring. Even the caregivers that he knows love him unconditionally and forever.