We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; in our latest installment, Angelika Byczkowski writes about her experience living with Ehlers-Danlos Syndrome.
Once I was whole. No, better
than whole, possibilities
strewn at my feet, choices
all mine for the making.
Then I got sick, and broken.
Now I struggle to fly with broken wings.
Old ambitions and desires
irrelevant, coming down
to earth with new humility.
Always aiming for superlatives,
now grounded with indistinction,
my new insignificance frees me
to fly from the need to be special.
Now I struggle to run with broken legs.
Can’t keep up, can’t catch up,
and the world passes by oblivious
to my desperate thrashing.
All that’s gained is lost
eventually. I jettison years
of accumulation, learn how much
I can do without, pare life down
to bare essentials, and find
the remaining kernel sufficient,
my load much lightened and easy
to swing over obstacles ahead.
Now I struggle to live with a broken spirit.
This, I think, I cannot do. I
languish, lacking spur of vital impulse,
motivation crippled, desire withered.
Paralyzed by apathy, stubborn
hope insists, after broken wings
and broken legs, after the crash
and pain of loss comes possibility
for something new. Anchorless alone
I drift, restrain my swelling panic
at this formless space all around me,
no purchase to be gained on these
feeble clouds, nothing solid to push
either for or against – I struggle only
with myself. And in this void I must trust,
resist the urge to close, and endure
with broken open heart.
Until she was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome, Angelika Byczkowski was a high-tech IT maven at Apple and Yahoo. She lives in a rustic cabin in the Redwood forests of the Santa Cruz Mountains with her husband and two dogs.