Dor (Originally Posted: July 28, 2012)

April 17, 2014

living with sickle cell disease, i think in prevention mode everyday. how can i prevent the most pain today? i have a baseline. what i can deal with and what i don’t even notice. this is my everyday. but above that threshold, i enter a place i don’t want to be. mostly because i don’t have the time for it and mostly because having pain sucks.

in the states, i live a pretty cushy life: i have a car, i have friends who understand and go out of their way to help me prevent pain, and worse case scenario will drop what they are doing to assist me if i need it. prevention means always having a sweater and several umbrellas in the car so i don’t get cold or wet, always having pain pills on my person, borrowing vanessa’s shawl at work if i need extra warmth. my preventative actions are so ingrained in me that i don’t even think about it anymore, nor do i ever really actively think about me actually “having” this disease.

in brazil, it’s different. i have to always have my umbrella and sweater/raincoat in my book-bag just in case. i don’t have a car and i can’t be caught in a sudden rain and cold burst (though it still happens). this makes my book-bag heavier and can cause me pain in my back, but i don’t have a choice. the vibrations of the bus depending on where i sit and how my body wants to act that day can cause me pain as the repetitive and jarring motions must agitate the shit out of my insides. today, i tied my bikini top on too tight which caused me to sickle, but i couldn’t take off the top to adjust until i got off the bus and into a restroom somewhere. and of course, i packed pain pills, but decided to change my bag at the last minute and they were left behind. i always adjust for the presence or absence of prevention and i knew that if the pain persisted i would buy some pills and keep it moving. most times, my above-baseline pain is transient and doesn’t last that long and luckily, once i adjusted the bathing suit and got in the sun, it went away.

all of this to say, i actively think a lot more about my pain and having sickle cell disease here. i feel more mortal here.

i don’t like it, but it also makes me think about all the people who have a more severe variant of the disease or those who in general don’t have a cushy life that can be made malleable around their disease. and i am thankful through it all.

i met a researcher last night at a samba concert who did research on pain and all i thought about was how difficult it must be for her. how hard it is to measure. and then i thought about today and how simple it is for me to measure.

i’m not writing this to worry anyone (francine, nush, and countless other concerned friends). this is a variant of what i go through everyday in the states, too. i just don’t speak about it or ever really articulate it into words. i’m writing to release it tonight, though.

i get to live an amazing life and experience so much and i never let this disease define who i am, but i do have it. sometimes i think it’s good to give it the weight and respect it deserves. you just can’t sit in it. so tonight, i pop a pill and do some work, but if i’m up for it tomorrow – I dance!

One monkey don’t stop no show…unless said monkey jumps from trees into the apartment. then all bets are off.


ps i think i should give my pain a name. Like, “TYRONE is back in town. He’s making me stay in tonight.” damn you, tyrone. leave me some suggestions.

UPDATE:  My sister said naming it gives it ownership and we don’t own what pain brings.  Wise beyond her years!