Priscilla likes to stretch out on the bed right next to him and show him pictures on her phone. Most of the time, he doesn’t pay attention. On occasion, however, he moans in a meaningful way, and we’re reminded that he’s really here. He’s not a body without a soul. Our work isn’t for nothing.
This morning, it’s just me and my dad, and that’s a little unusual. Technically, we’re all responsible for one shift: my mom has the night shift, from midnight to 8:00 a.m., I have the day, from 8:00 a.m. to 4:00 p.m., and Priscilla has the evening, from 4:00 p.m. to midnight. But this is where everyone congregates. Also, it’s difficult to move him without help, and we must come running if we’re needed. Well, I have to come running. I never call for anyone’s help when I’m caring for him on my own. I don’t feel like I have that privilege.
It’s 11:00 a.m., one of his feeding times, so after changing his diaper, rotating him to his other side, and cranking the top half of his bed up so he’s relatively upright, I exchange my soiled latex gloves for clean ones, lift his feeding tube away from his tummy where we keep it tucked out of the way, and set it on top of a white towel. Then I fill a large plastic syringe with liquid food from a can. It’s thick and brown and has an unpleasant smell—I tasted it once, and it’s decidedly nasty—but it contains all the calories and nutrition that he needs. It’s keeping him alive.
I uncap his feeding tube and am about to insert the syringe when he grabs my wrist with surprising strength. When I look at his face, I find him staring straight at me. His eyes are focused and clear, aware.
“Hi, Ba,” I say, a smile bursting over my face. He hasn’t interacted with me at all before now.
He moans low in his throat. Is that hello?
I can’t help but feel excited. He’s been here all this time, but I’ve missed him so much. “I’m feeding you, but when I’m done, we can look at pictures if you want.”
I try to insert the syringe into his feeding tube again, but he tightens his hold on my wrist and shakes his head.
“What is it, Daddy?” I ask.
Grimacing, he lets go of my wrist and motions with his hand. No one here knows sign language, but that hand signal, shaking his fingers from side to side, is universal.
Stop. No more.
“But it’s been hours since you last ate,” I say, still not fully comprehending what he’s communicating.
He squeezes his eyes shut and makes that hand motion again.
Stop. No more.
“If you’re not hungry now, I’ll feed you later, okay?”
He turns his face away from me, but I see the moisture tracking slowly down his cheek. My dad is crying.
One last time, he motions with his hand: Stop. No more.
I don’t know what to do, so I quickly put everything away, tuck his feeding tube back under his hospital gown, and run to the adjoining bathroom, where I sit on the tile and hug my knees to my chest.
My breath comes in short pants. The light is so bright it’s making me dizzy. I’m still wearing latex gloves, so I peel them off and toss them into the trash bin. My skin has absorbed the sharp chemical scent of the gloves, and even though they aren’t close to my face, the smell is nauseating me, filling my mouth with saliva. I tuck my hands behind my knees to smother the scent, and I rock back and forth and tap my teeth together, trying to return to a tolerable state of being.
Stop. No more.
Dear God, what are we doing?
He doesn’t want this.
He wants us to stop.
But if we stop, that means . . .
No, I can’t do that.
Even if I could, my family would never allow it. Worse, they’d condemn me. They’d exile me.
I can’t lose my family. They’re all I have.
It’
s too much. I can’t stand my thoughts. So I start counting in my head. I get to sixty, and I start back at one. Over and over until I don’t need to rock anymore, until my jaw is tired, until I’m numb.
Finally, I find the strength to push myself to my feet and open the door. My face is hot, and there’s loudness in my ears. I feel like something enormous has happened, like the entire world has shifted on its axis. But my dad’s room looks just like it did before. He’s sleeping just like usual. He looks exactly the same. Old. Frail. Tired, even in rest.