i have landed in a deep hole for a number of reasons. & now can only wait to see… how long it lasts.. if it is PEM/PENE, a crash, or a relapse. it means an acute exacerbation of all of my symptoms – too lengthy & tedious to detail. i tire of living it, let alone talking about it. so i am in lock down nothingness … with just brief peeks into life. & the usual need to force myself to eat. then return to closed eyes.
to those closest to me, please know how very much you mean to me. always. your love is part of the reason.. i can find the strength to continue. you hold me up when i think i can no longer do this – you remind me that i can (even when i ask you to please lie.. about it) & you hold the hope at the times when i am too ill to hold it. whenever i have needed you, you have been here for me. i am often unable to return the favor. but i pray you know how very much i love you.
a friend is now doing the hardest thing i can ever imagine a parent having to do – she is walking her son home as he dies. no longer suffering. carrying him with the unconditional love that she has provided for the last 11 years. her fb posts are … poignant & yet so profoundly moving in their vulnerable honesty & wisdom borne of having endured so much. she posted a different version today of “stand by me.” along with this photo.
my own suffering pales in comparison. “we are all walking each other home.” during our brief time on this earth, as we experience joy & tragedy, may love always be that which brings us meaning & connection. & allows us to be most fully human.
if you believe in prayer, say one for my friend & her family & her son. they are in the most Holy of places now. at the threshold of the fragile line.
peace & love……