The Things We Cannot Say(9)

Her frustration is palpable, but I don’t know what to do. Mom and the doctor are still squabbling, and Eddie is still curled up beside Babcia, rolling the dreidel along the sheet now as if it is a toy train. I look at Babcia helplessly, and she raises her hands as if to say I don’t know, either. For a moment, I swipe through the screens of Eddie’s most commonly used icons, pausing each time so she can check to see if what she needs is there. After a minute or so of this, a new thought strikes me. I open the app to the new icon page, and as soon as I do, Babcia snatches the device back eagerly. She finds a picture of a young man, then starts to type, slowly and carefully. She’s not using her forefinger—she’s using the side of her pinkie and her ring finger. It’s awkward, and it takes her a few goes to form the word correctly, but then she does, and she clicks the save button and shows me proudly.

Tomasz.

“How is she?” Mom asks me from the doorway. I look up to her and find the doctor has gone, possibly to find a stiff drink.

“It’s slow, but she’s using the device. She’s just asked me for—”

It occurs to me what Babcia is actually asking, and my heart sinks.

“Oh no, Babcia,” I whisper, but the words are pointless—if the stroke has damaged her receptive language, then she’s in much the same boat as Eddie; spoken words have no meaning for her right now. I meet her gaze again, and tears glimmer in her eyes. I look from her to the iPad, but I have absolutely no idea how to tell her that her husband died just over twelve months ago. Pa was a brilliant pediatric surgeon until his seventies, then he taught at the University of Florida until his eighties—but as soon as he retired, dementia took hold and after a long, miserable decline, he died last year. “Babcia...he’s...he...um...”

She shakes her head fiercely and she hits the buttons again.

Find Tomasz.

More scrolling, then:

Need help.

Emergency.

Find Tomasz.

Then, while I’m still struggling to figure out how to deal with this, she selects another series of icons and the device reads a nonsensical message to me:

Babcia fire Tomasz.

Her hands are shaking. Her face is set in a fierce frown, but there’s determination in her gaze. I put my hand gently on her forearm and when she looks up at me, I shake my head slowly, but her eyes register only confusion and frustration.

I’m confused and frustrated too—and I’m suddenly angry, because it is brutally unfair to see this proud woman so confused.

“Babcia...” I whisper, and she sighs impatiently and shakes my hand off her arm. My grandmother has an unlimited depth of empathy and she loves relentlessly—but she’s the toughest woman I know, and she seems completely undeterred by my inability to communicate with her. She goes back to scrolling through the pages of icons on the screen of the iPad, until I see her expression brighten. Again and again, she repeats this process, painstakingly forming a sentence. Over the next few minutes, Mom goes to find a coffee, and I watch as Babcia tries to wrangle this clumsy communication method into submission. It’s easier for her now that all of the icons are on the “recently used” page, and soon she’s just hitting the same buttons over and over again now.

Need help. Find...box...go home. Want home.

I swallow my sigh, take the iPad and tell her Babcia in hospital now. Then go home later.

This is the language pattern I have to use with my son, and it’s one that’s automatic for me—now this, then something else—explaining sequences of events and time to him because he has no concept of it without the guidelines of instructions and schedules. Communicating via the AAC is so damned restrictive. With Eddie, I’m used to the limitations because it’s all we’ve ever had—and it is vastly better than nothing. Until he learned to read and use the AAC, our whole life was a series of meltdowns inspired by his overwhelming frustration at being locked inside himself, unable to communicate.

The problem now is that with Babcia, I’m used to the endless freedom of spoken communication, and having to revert to this AAC app suddenly does seem an impossibly poor substitute.

Babcia snatches the iPad back and resumes her demands.

Need help.

Find Tomasz.

Home.

Box.

Now.

Help.

Box.

Camera.

Paper.

Babcia fire Tomasz.

Mom steps all the way into the room. She hands me a coffee, then returns to stand at the foot of the bed.

“What’s this about?” she asks me.

“I don’t know,” I admit. Babcia gives us both an impatient glare now and repeats the commands, and when we still don’t react, she turns the sound all the way up and hits the repeat button again. This is a trick she’s learned from my son, who does the exact same thing when he’s not getting his own way.

Help.

Find Tomasz.

Box.

Camera. Paper. Box.

Now. Now. Emergency. Now.

Find Tomasz. Now.

Babcia fire Tomasz.

“Christ. She’s really forgotten Pa passed,” Mom whispers, and I glance at her. Mom is not known for vulnerability, but right now her expression is pinched and I think I see tears in her eyes. I shake my head slowly. Babcia seems quite determined that she doesn’t need me to remind her that Pa has passed, so I just don’t think that’s it.