Once I was a full-time musician:
\nJazz pianist
\nComposer arranger bandleader accompanist
\nMentor prot\u00e9g\u00e9e tradition-bearer
\nChurch pipe organist
\nR&B keyboard player
\nBiker runner yogi soccer player
\nI suppose I still am all of those things
\nonly now in a private, dormant sense<\/p>\n
In 2014 I was scheduled to move but the new place wasn\u2019t ready
\nRather than move back with parents, which meant longer commutes
\nI chose to sleep on friends\u2019 couches thinking it wouldn\u2019t take long
\nThis maxed out my stress level for weeks
\nFinally a friend had an upstairs they were subletting
\nHad my first crash there, when my body finally let down its high alert
\nMaybe I would\u2019ve gotten sick anyways
\nA month later I played five gigs in three cities in 24 hours
\nFelt awful after but couldn\u2019t argue<\/p>\n
[A crash is a bit like
\nthe end of a 20hr day,
\nwhen you can barely stand up straight or put together a sentence
\nOr like how you feel when you return to the gym after a long absence
\nI\u2019ve had hundreds by now, each worse than the last]<\/p>\n
Doc said to exercise and go to therapy so I did
\n2014 (age 24) 6 days on = 1 day crash (socially acceptable at this point)
\n2016 5 days on = 2 day crash
\n2016 four month-long case of mono
\n2016 grad school 5 days straight home for bed rest after class = 2 day crash
\n2017 diagnosed
\n2017-18 three mono relapses 4 days straight home after class = 3 day crash
\n2018 graduated & moved back home 1 errand = 10 day crash
\nFour naps a day, every night is warfare
\nFound out the hard way I now crash from showering and visitors
\nNot much, but it\u2019s a life (still life)<\/p>\n
The hardest part isn\u2019t the pain, the brain fog, or the isolation
\nThe hardest part is that those fleeting moments
\nwhen I lose track of time, lose myself in the moment,
\nfinally start feeling slightly normal, slightly human
\nare the exact moments I am putting my physical health in the greatest danger<\/p>\n
Sometimes I wish the Hippocratic oath applied to us
\nBut docs like to get real mad when we ask for help.
\nI used to think doctors by definition help sick people
\nYearly physical like a parole hearing–
\n20 minutes to plead our case (and humanity)
\nto someone with all of the power
\nbut none of the motivation (or humanity) to help
\nNurses have all the humanity and none of the power
\nSpecialists and alternative folks have all the answers
\nuntil they have no answers
\nVery hard to accept without despair the fact that
\nwe know so little about so severe an ailment<\/p>\n
Try as I might, still
\nAshamed I got sick and that I haven\u2019t *figured it out* yet
\nGuilty I can\u2019t be there for everyone I love
\nI miss everyone and everything
\nToo Hurt To Cry (Candi)<\/p>\n
Gotta Make The Best Of A Bad Situation (Gladys)
\nGrateful I can still sit in the sun
\nLaugh out loud every day, or try
\nGrateful I can still use the bathroom by myself
\nGrateful I can continue my life\u2019s work, unlike the skier in Unrest
\nNow listening to more music more deeply than ever before
\nBrain too foggy to read but skimming my way thru some books,
\ngrateful for the public library<\/p>\n
Grateful for my folks for believing me and for the never-ending legwork
\nGrateful for everybody that\u2019s reached out to me
\nPlenty of love for those I\u2019m no longer in touch with
\ndon’t know if I would be if they were this sick
\nGrateful for everyone and everything
\nGrateful for activists advocates and allies
\nGrateful for and faithful in ME\/CFS researchers, Godspeed<\/p>\n","protected":false},"excerpt":{"rendered":"
Once I was a full-time musician: Jazz pianist Composer arranger bandleader accompanist Mentor prot\u00e9g\u00e9e 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\u2019t ready […]<\/p>\n","protected":false},"author":6,"featured_media":897,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1,25],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2021\/09\/EA291F4F-1003-4C4F-8BCC-8D8ADEA9B533-scaled-e1631657695645.jpeg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/896"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=896"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/896\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/897"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=896"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=896"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=896"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}