Posts
Mom Has Progressive Supranuclear Palsy
Some illnesses steal a person slowly — not through pain you can treat, but through pieces of self that quietly disappear. My mother’s illness is like that. It’s not Parkinson’s, as we once thought. It’s something worse, something with no treatment, no timeline, and no mercy.
She was diagnosed years ago with Parkinson’s. But she doesn’t have Parkinson’s after all. Too bad — because unlike Parkinson’s, this one doesn’t come with medication, or hope. Progressive Supranuclear Palsy. Even the name sounds cruel. There is nothing we can do except watch as her central nervous system fails miserably, one small function at a time. Doctors call it a “slow progressive decline.” We call it torture.
Our mother — who raised six children on her own, who worked double shifts as a matter of routine, who often walked home from the factory to save cab fare — is now profoundly changed.
We watch her try to sit up straight in her chair. To walk a few steps. To lift a straw to her mouth.
We have watched her pick worms from her ice cream, bewildered by the staff’s willingness to serve her such food. She refuses juice because it’s full of bugs, and blows imaginary worms from her straw before sipping her hot chocolate. We cannot convince her that the bugs and worms live only in her mind.
She moves easily from a normal conversation about today to a vivid story from decades ago. She does a lightning-fast mental calculation and tells me she would have been married for 64 years. Then, just as quickly, her face tightens. Fear takes over. She speaks of a cat attacked by dogs, of a little girl too afraid to pass a line of men with big black dogs, of a child upstairs who is beaten and left hungry. She hears his cries all day and all night. She wants to go upstairs to help — though there is no upstairs, and she can no longer walk.
Every night, she says, her son and grandson visit and keep her awake. Another resident follows her to her room, writing love letters in Swedish, in invisible ink. The nurse, she’s certain, is having an affair with more than one man — and on her last trip to Mexico, probably had an abortion.
She’s trying to make sense of where she is. Not sure if she’s visiting me in Paris, if I’m visiting her in Alberta, or if we’re all somehow in Nova Scotia. She asks if I think she’s at death’s door. Then she calls the police to report that the little boy from upstairs — the one being attacked by dogs — is outside and needs help. “Why won’t someone do something?” she pleads.
Good question. But what?
We see what a fine line we walk between normal and abnormal, between reality and fiction. Each of us can only believe what we believe, no matter what others insist is true.
And yet, within her confusion, I still catch flashes of the woman she was — the one who worked, loved, sacrificed, and built a life out of nothing but grit and devotion. The stories she tells now may not belong to this world, but the courage behind them still does.
So we sit beside her. We listen. We wipe away the invisible worms. We stay. That’s what she did for us, and now it’s our turn.
Definition of poignant: painfully affecting the feelings.
