at night i listen to their phantoms
shouting in my ear
shaking me out of lethargy
issuing me commands
i think of their tattered lives
of their feverish hands
reaching out to seize ours.
it's not that they're begging
they've earned the right to order us
to break up our sleep
to come awake
to shake off once for for all
claribel alegria, nocturnal visits
“I was learning the craft of poetry, which really was an intensive version of what my mother had taught me all those years ago—the craft of writing as the art of thinking. Poetry aims for an economy of truth—loose and useless words must be discarded, and I found that these loose and useless words were not separate from loose and useless thoughts.”
(Ta-Nehisi Coates, Between the World and Me)
I started making “Aliceheimer’s” comics before I knew that graphic medicine existed. Watching Alice — a lifelong reader who was finding straight prose too hard to track — eat up books like “Maus,” “Persepolis,” “American Born Chinese” and “Fun Home” when she lived with me, made me certain that to tell our story I wanted to use a form that a person with dementia could access.
My father had read [Alice in Wonderland] it out loud to us as kids, and during dementia Alice and I often recited parts of it together. But the day I cut up a cheap paperback copy of “Alice in Wonderland” to depict Alice’s bathrobe, her favorite garment, I knew I had found the voice for the story. Life with dementia is filled with alternate realities and magic, both scary and uplifting. Accepting wonderland as our baseline made day to day life an adventure.
The dominant zombie story of bodies without minds strips people with dementia of their humanity and interferes with creating new kinds of familial connections. How many of us have the privilege of knowing our parents as children? Through connection we heal. Comics lead us to light because, subconsciously, we associate comics with laughter, and we need permission to laugh at sickness and not just describe it in medical terms. Laughter is respite. It opens new possibilities for how to cope.(from the nyt interview by nancy stearns bercaw)
kintsugi is the japanese art of repairing something with gold, silver, or other material. though there is apparently commercial appeal in this technique right now - it is all over home design websites - the beauty of it is in its practicality. we so often throw things away when they become imperfect, rather than celebrating the beauty of age, wear, and breakage. but only in the last few decades have we become so obsessed with status and buying and displaying wealth that we can just toss something and move on, rather than create memories or histories.