Takeaway
This poem describes the profound loss of autonomy experienced by patients with dementia. It’s a call to truly see the person grappling with the reality of their diminishing faculties.
Creative Arts in Medicine | June 18, 2025 | 1 min read
By Conor McDonnel, MD, University of Toronto & The Hospital for Sick Children
Lewy-body diary
I thought I was at an earlier stage but it turns out I am not
This is the end of any privacy afforded to my faculties
With increasing acuteness everything counts now
Cracks in things are promise of light, false
I carried on as if I could be capable of
this relentless seam of adjustments
accumulated deletions of ability
consequences of pressing hard
accretion of irrevocable truth
subsidiary shame category
conceal what can be done
begin making concession
intrusive dominant states
accumulated indignities
my world grown small
awaken and inventory
cognitive exfoliation
coercive distraction
nothing hopeful
that’s gone too
Bless children their future
allow belief
Imagine a
journey I
can still
take &
leave
time
for
us
4
u
I
.
.
.
I wrote this poem from the point of view of the patient. The idea came to to me after reading a “New Yorker” article on a writer who’d been diagnosed with dementia and continued to write/journal until such time as he was no longer able. My father-in-law, Jean-Paul, is currently suffering from vascular dementia and my close friend, Peter, lost his dad to Alzheimer’s. This poem is dedicated to them and a reminder to me that I fear this diagnosis for myself, my family and friends, and my patients, most of all. Nevertheless, I hope there is a dignity inherent to the piece, and maybe a touch of defiance in the face of a losing battle.
Read more about the author on his website.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.