Life as an Extreme Sport

modes of communication

We thought her consciousness had passed beyond us. Hoped, really. It would be easier, the essence gone, the body needing to catch up.

We were wrong. She’s still in there, she’s still struggling to communicate. It started last night, when Tracy told her she was going to sleep in another room – she began to twist and move, make faces. Today, when hospice was here, the nurse asked her if she was in pain, could she squeeze her fingers?


The nurse switched hands. “Can you squeeze my fingers if you’re hurting?”


“Can you squeeze my fingers if you are not hurting?”


The nurse repeated this with blinking, with raising eyebrows. Nothing, save the one time she felt the most gentle of squeezes.

I stood in my corner thinking she was gone, she was gone, it’s just the shell of the body remaining… and then the nurse asked Mom to stick out her tongue if she was hurting. And Mom did.

The nurse asked Mom to stick out her tongue if she wasn’t hurting.


Maybe it was a fluke. Timing. Random movement. The nurse asked again, and again, Mom stuck her tongue out, firmly, with force.

She is still here, she is still trying to communicate. She opened her eyes, deliberately and focused, for the first time in 48 hours.

When the nurse swabbed her mouth with a sponge (for hydration and relief of dry tissues), Mom sucked on the sponge fiercely, with determination to get water.

How much of this is reflex, and how much is it my mother is trapped in a body that won’t let her communicate, won’t let her tell us anything, trapped in pain? That, that is the most horrible thought for me – locked in, aware but unable to communicate that awareness. It terrifies me, it fills me with anguish and fear – to not be able to say I’m in pain, I hurt, I want to move, or anything else. Thank you, I love you.