Once I was a full-time musician:
Jazz pianist
Composer arranger bandleader accompanist
Mentor protégée tradition-bearer
Church pipe organist
R&B keyboard player
Biker runner yogi soccer player
I suppose I still am all of those things
only now in a private, dormant sense
In 2014 I was scheduled to move but the new place wasn’t ready
Rather than move back with parents, which meant longer commutes
I chose to sleep on friends’ couches thinking it wouldn’t take long
This maxed out my stress level for weeks
Finally a friend had an upstairs they were subletting
Had my first crash there, when my body finally let down its high alert
Maybe I would’ve gotten sick anyways
A month later I played five gigs in three cities in 24 hours
Felt awful after but couldn’t argue
[A crash is a bit like
the end of a 20hr day,
when you can barely stand up straight or put together a sentence
Or like how you feel when you return to the gym after a long absence
I’ve had hundreds by now, each worse than the last]
Doc said to exercise and go to therapy so I did
2014 (age 24) 6 days on = 1 day crash (socially acceptable at this point)
2016 5 days on = 2 day crash
2016 four month-long case of mono
2016 grad school 5 days straight home for bed rest after class = 2 day crash
2017 diagnosed
2017-18 three mono relapses 4 days straight home after class = 3 day crash
2018 graduated & moved back home 1 errand = 10 day crash
Four naps a day, every night is warfare
Found out the hard way I now crash from showering and visitors
Not much, but it’s a life (still life)
The hardest part isn’t the pain, the brain fog, or the isolation
The hardest part is that those fleeting moments
when I lose track of time, lose myself in the moment,
finally start feeling slightly normal, slightly human
are the exact moments I am putting my physical health in the greatest danger
Sometimes I wish the Hippocratic oath applied to us
But docs like to get real mad when we ask for help.
I used to think doctors by definition help sick people
Yearly physical like a parole hearing–
20 minutes to plead our case (and humanity)
to someone with all of the power
but none of the motivation (or humanity) to help
Nurses have all the humanity and none of the power
Specialists and alternative folks have all the answers
until they have no answers
Very hard to accept without despair the fact that
we know so little about so severe an ailment
Try as I might, still
Ashamed I got sick and that I haven’t *figured it out* yet
Guilty I can’t be there for everyone I love
I miss everyone and everything
Too Hurt To Cry (Candi)
Gotta Make The Best Of A Bad Situation (Gladys)
Grateful I can still sit in the sun
Laugh out loud every day, or try
Grateful I can still use the bathroom by myself
Grateful I can continue my life’s work, unlike the skier in Unrest
Now listening to more music more deeply than ever before
Brain too foggy to read but skimming my way thru some books,
grateful for the public library
Grateful for my folks for believing me and for the never-ending legwork
Grateful for everybody that’s reached out to me
Plenty of love for those I’m no longer in touch with
don’t know if I would be if they were this sick
Grateful for everyone and everything
Grateful for activists advocates and allies
Grateful for and faithful in ME/CFS researchers, Godspeed
