i used to think life was a tragedy—now i know that its a comedy

im shaky—shaky as normal

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its hard to get around the house—sometimes i use the walker to ease my trip from the living room to the bathroom

my core is shaky (the muscles there) and it makes it hard to walk—also my shoulders and arms move wildly if i do not clench them down

this makes it hard to do things—i am getting restless—i want to be in positions other than (lying down) (kneeling hunched over) (standing with walker) without shaking—and i believe that it may only be when i am dead that my shaking stops

i dont want to die now though—i want to stay alive to spend time with my girlfriend (primarily) and to see if my writing gets read more

i am focused on moving more slowly (by which i can move more gracefully)

on replacing fast movements with slower ones

on not concealing my twitches around strangers (it doesnt help me comfort-wise and it doesnt help them understand what im going through)

i stop shaking when i sleep

i stop shaking when im loving my boo

in fact the other day when lovemaking i had the distinct feeling that this is what im supposed to do today—that making love to my baby was the purpose of that day

when i wake up (sometimes—for a few seconds) i forget about my shakes—for a few seconds my shaking is just getting started and i take a few steps without them

then it starts

and it lasts all day

with respites when i lie face down

i have to set aside the other stresses in my life and face this more basic one—the stresses of simply moving and sitting and walking are better where my mind is placed (than finances and people and politics)

i have to remember that my dystonia is better now that its being treated with austedo than it was on ingrezza

i have to remember that my arms have always hurt

that its always been uncomfortable to ride in a car

i have to remember that i used to knock my own glasses off my face because of my uncontrollable movements (and i hardly ever do this now)

i have to remember that i used to spill my babys coffee every time i took it to her (now i usually dont spill the coffee)

thats the sort of thing im dealing with

its hard to focus on much else

im surviving physically

im proud of that


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