This beautiful poem, by Bronte Nicole Ficek, originally published in Neurology, June 2017, is a tribute to her grandmother, Mercy Lotilla Asencio. Read her personal story here.
Square patches of light remember you
Square patches of sunlight blanketing my piano
Remember you today, Lola.
They speak of a baby-pink end of life, somehow beautiful in your paralysis
Of square patches of flesh dissolved into bed sores you couldn’t feel.
They speak of your gorgeous fair legs, that singing voice, book-writing days, indigents you fed.
They remember the healthy you because I cannot.
I remember the petrified you.
I remember the sores and those frozen eyes
and the way you winked at me or at least I thought you winked at me
when I sang to you of Danny Boy or
was it of you,
you who went off to war but why did war choose you.
I remember your first letter home across seas:
Have the I0th edition by editing the 9th edition edited by you and send it to Teresa by Dec. Indicate the
pages. It’s with your Mama.
I didn’t know you until—
Something about a supranuclear palsy: progressive, shameless, Neuro War I
Parkinsonism screaming at you to obey, its co-lieutenant Dementia
Torturing your dendrites until they writhed
like worms without heads, dying of a plague they now call PSP.
It started with your eyes
Then flaunted its success by gnawing at your language, your walking.
Your next letter home came:
I have a wheelchair now. I ride on a wheelchair now.
Flee! you told the soldiers, but the welcoming brainstem, fooled,
did not know its error until Broca dissipated and music was all that remained.
Light patches on your piano watched your right fingers struggle,
Your silent tears as your only outlet failed.
I bought you a left-handed concerto, but this was all you wrote back:
Whraels your 9 edit. 5hat edt.
I cried, Lola.
I sank when I heard about your dysphagia, the spoon-feeding, how the tube bore a hole
in your stomach, your body rejecting it, starving, while you lay next to those patches of light.
The hardest was your last letter, a fragment of the sentences escaped from the mutated tau: