“What are our sources of life amidst the forces—systemic, environmental or other—that have made it so that some of us are at risk of dying sooner?”

“This question feels relevant to where we are globally. As things we once depended on unravel, die or disappear, when we are hurting, How do we keep going?”

“Grieve, with abandon, all you are losing.” 

“Pause, and when you are ready, focus on what is possible.”

 This is the “second star” in Hanna du Plessis’s essay entitled “Five Stars” — sage, visceral words and a reminder that even the toughest, most beautiful badasses must cry, that we don’t have to be strong or pretend that everything is OK and that grief for all the love unspent is perhaps the only thing that makes sense.

“When my body slammed into the reality that I might have ALS it was dark night and black waters all around."

"My familiar constellations were gone. My eyes darted around for way-finders. I needed to build something to steer me through this crushing passage.” “ALS is a heartless landlord, relentlessly evicting me, tearing my belonging apart, sending me and my naked arse into the streets.”

"The worst days are when I have no more fight. When I slip out of all shelter, the mud parting between my crumpled feet, black waters rising, swallowing me completely, and I feel nothing.”

“I experience a pulling apart, the world moving out of my reach while the cell I know receipts into a mute, motionless, shallow-breathed breathing.”

“A small storm of loss rumbled through me and spilled into public view.”

“I experience a pulling apart—the world moving out of my reach while the self I know recess into a mute motionless shallow-breathed being."



I struggle to reconcile my ambition with my reality."

"At night I feel like a surfboard packaged for international travel." "I lie with silicone stickers and sheepskin on my bony bits to cushion against bedsores and water blisters. I have sleeves on my arms to prevent chafing. Five pillows prop up unmoving limbs." "My scapula is tucked, arms pulled down, fingers spread and curled around a pillow. Ventilator mask on, TENS unit pulsing. A cherry-red cocktail of three pain meds has been pushed through my tube (they taste like a children’s party if I burp)." "I lie motionless." "A magnetic pull burns in my body, this limp and pained body wanting only one thing — to be held by my beloveds."

"I am held hostage by gravity.”

“In the living will (or advance directive) there is a question about if you want to continue living even if you cannot take care of your daily needs, if you can’t communicate and if you were a burden to your people.”

“I wrote that it would be very hard for me, something I would prefer not to do. But here I am – living an unwanted scenario and still wanting to live, still wanting to be here, be loved.”

"I feel how disability stitches you down in place and covers you up. I often feel invisible and blind. Blind because of my mute mouth, and hands that rest on my lap like a marionette with cut strings."

"I miss being in the world, a world made for me.”

“My hands were the first part I couldn’t stretch on my own.” “The occupational therapist, working in a siloed system, prescribed hand exercises that took an hour a day. As if I wasn’t dying on multiple fronts.”

“Part of dying is being vividly alive also. I feel stripped of my filters. Please just be in the moment with me. There is nothing to fix.”

“Imagine if tomorrow everyone on the margins woke with garlands of flowers and prayers and incense around them." "Imagine their joy as they stepped or rolled or stumbled into a world so tightly woven together in reverence for life that they never feared slipping through the cracks ever again.”

“The watermelon-colored roses in Donna‘s photo bring a memory to my body. Just last year I got up from my writing bench to bury my nose in that same rosebush. I long to be there again in writing heaven with my people.” “That memory and that longing clash with my current condition.”

“We have such little practice in allowing the grief to undo us, in trusting that the undoing will re-weave us into something larger.” “We know how to carry on, how to keep the organization running, how to maintain a sense of normalcy.”

“For the first time in my life I am not the one continuing, but witnessing a continuation that I can no longer participate in.”

“I watch the world carrying on from the window with a cat of loss purring on my lap.”

“Lean towards trusting what is.” “Orient yourself the way migrating birds do towards the destination calling you.

Now move, readjust course, move again, pause, feel for direction, find the magnetic pull and move again.

Remember that you are not alone in this darkness, trust in the help, both seen and unseen.

You can make this journey.

Home is waiting for you.”