& keep you wild

these are the dreams we should be having.
Bon Iver

—Perth

still alive who you love

(Source: musical-blog)

Love’s Plight, Josh Boston

(Source: vimeo.com)

this forever

this forever

  • me: well, it's time to leave the house and go about my business today
  • bowels: hahahahaha
  • 91 degree heat: MUHAHAHAHAHAHAHA

For the Both of Us

And why wouldn’t I strive to keep the poems of my dead friends in the world—keeping their work alive is keeping them alive. Isn’t that why we write?

i’ve been working with my therapist and with my doctors for a long time on accepting the idea that health is relative and accepting the ups and downs that come with chronic illness, but it’s really hard.  i feel like being frustrated about sickness and talking about it makes me sound ungrateful for the moments of better health i have, and not compassionate towards those who have it much worse. but if i restrict myself to only talking about gratitude for my relative health, it makes me feel fake and dismissive of real, painful, frustrating health problems that i do have.  

the unpredictable swing of it is one of the hardest parts.  that i can feel mostly well (for my own baseline, anyway) for a weekend and do lots of things i enjoy is awesome and worth celebrating. but then on monday when i’m at work, sick and constantly running to/stuck in the bathroom for no explicable reason, it brings me down.  some days i’m out of bed, out of the house, wearing real clothes and being a productive human, and some days i’m the one in gym shorts dragging myself to the supermarket for some melon, which will be the only thing i can stomach that day while i’m curled up in a ball in my apartment.  the lack of control is the worst. 

last wednesday i went in for a routine blood draw but between the heat and my stomach issues of late, i passsssed the heck out.  i came to to find that i had three nurses running around trying to make sure my BP was still high enough, putting ice packs on me, freaking out that i had sweated through my clothes in like fifteen seconds.  i was scared and embarrassed and confused and frustrated that a routine procedure which i can handle alone had suddenly turned into a situation where i wished i had somebody by my side.  the nurses wanted a reason, dehydration, lack of breakfast, whatever.  there is no reason beyond my ups and downs, all of these digestive problems that we chase around and never have been able to tame. 

lately i’ve realized that part of me has always secretly bought into this idea that my illness is part weakness or fragility on my part.  that if only i did ____, it wouldn’t be that bad, i would be better and running up mountains and eating whatever i want.  but that’s not real.  i’m ‘weak’ because my body is a mess and we haven’t found good ways to make it less of a mess yet.  i’m not actually weak, and i’m certainly not intrinsically weak because i don’t take good enough care of myself, or because i’m not brave or strong. 

after i fainted i summoned up all of my brave girl reserves and splurged on a cab home, clutching my water bottle and barf bag.  i called my mom to tell her i made it home, told her how frustrated and shaken i was, and she reminded me that i should be grateful that i WAS able to make it home on my own.  she’s right, and i am grateful, and i’m proud of myself that i have strengthened my brave girl reserves over the past year.  i’m grateful, albeit in a sad way, that my bad days might be someone else’s good ones, that to them i’m actually pretty healthy.  it could be worse.  but after we hung up i turned on the AC and broke down because it could also be better.  i couldn’t look at my puffy face as i whispered ‘i just don’t want to be sick anymore’ because i felt like a sad, boring, ungrateful baby.  but that part is real too, and it has to be acknowledged.  it was a hard day.  i’ve had a lot of them.  it doesn’t make a difference to my body what i want, but sometimes i have to feel free to say it, to feel it. it wears you down. i don’t want to be sick anymore.