Page 110 of Soft
"He needs to tell you when it's a bad day rather than managing it alone and hoping you won't notice. That's the most important thing. The isolation of trying to appear unaffected is exhausting, and exhaustion makes everything worse."
"We’re working on that. He’s gotten better at telling me when I ask. Maybe soon we’ll get to the point where he volunteers the information.”
"I am," I confirmed.
"Good." She made a note. "Lighting—you've already adjusted at home, from what I understand, and in your workplace. That's significant. Sleep matters more than most people with macular degeneration realize. Consistent sleep, not adequate sleep. The eye needs recovery time, and it needs it on a schedule." She paused. "And he needs to come back every four months rather than six for the next year. I want to track this more closely now that we have a clear baseline."
"We'll be here," Daddy said before I could utter a word. Part of me felt discouraged to know I needed to come more frequently after a good checkup. But I also understood her worry.
Dr. Whipell looked at him for a moment. "You're in this for the long-term?"
"Yes. I plan to be here through every phase of this journey.”
She nodded. I got the impression she was revising something—her expectation of what today would be, maybe, or her sense of the situation I was in. Whatever the revision was, it seemed to settle her. She made another note and then looked at me.
"Grizzly. How are you managing emotionally? And I want the real answer, not the one that sounds like you have everything handled."
"Better… Significantly better than I was."
"Good. That's the other thing that matters most, and I mean that medically, not just as a platitude. Stress accelerates everything. Peace slows things down. Whatever you're doing—" she glanced between us "—keep doing it."
She walked us back out through the waiting area herself, which she didn't always do. The receptionist was on a call and gave us a small wave. We were almost at the door when Dr. Whipell stopped.
"I'm sorry," she said. "This is entirely unprofessional, and I apologize in advance."
Daddy looked at her with patient amusement. "It's okay."
"My nephew is eight, and he has been playing baseball since he was three and a half, and when I told my sister Grizzly was coming in today she made me promise on her good china that I would—" She stopped. Composed herself. Tried again. "There is a baseball on my desk. I told myself I wasn’t going to ask."
"Do you want me to sign it? For your nephew?" Daddy asked.
"I would like you to sign it. Yes, please."
He smiled the full version of his smile, showing off both dimples. "Go get it."
While she went to get it, Daddy tugged me close. He didn’t say anything, likely because of the ears around us, but I could feel his joy radiating though his touch.
Dr. Whipell returned with the ball and a marker. "His name is Demarcus."
He wrote on the ball carefully, making sure each word was clear to read.
For Demarcus. Keep playing. — Paxton Wells.
She looked at it and then at him and said, very sincerely, "Thank you. He's going to absolutely lose his mind."
"Tell him to work on his footwork," Paxton said. "Whatever position he plays. It's always the footwork."
She laughed, which was a sound I had not heard from Dr. Whipell in any of my appointments. It transformed her face briefly into something younger and entirely unguarded. "I'll tell him. Thank you both."
We stood on the sidewalk outside the office after the appointment.
Daddy stood beside me with his hands in his pockets, looking at nothing in particular. I stood beside him, body posed in mostly the same way, waiting to see what he had to say.
Thinking of everything he’d committed to already, I felt a touch overwhelmed. He'd gotten up early and made a list on his phone with questions. Then he’d driven me to the office, sat in the exam room, interacted with the doctor, and signed a baseball for a kid he may never meet. All of it had been voluntary.
The word had been in my head since early this morning, though I hadn't known until right now what it was naming.
Voluntary.
