i don’t know how old i was when i learned i had cerebral palsy. i suspect it was when i was ten, when i had to have the third of six surgeries… the first one i was old enough to remember. i had a navel hernia — something to do with the abdominal wall and a hole… and if it’s not fixed, your stomach could mesh with your intestines and you die. or at least that’s what i remember from the explanation of the thing all those years ago. i’d been suffering suicidal ideation for two years by this point in my life. i would’ve preferred death, but… i was ten. my parents found a doctor and scheduled the surgery and here i am.
i’m always amazed at how full of irony life can be. seconds before i’d begun typing this, the group messaging app used by the gals in a bible study i’ve been attending started sounding off notifications. a friend’s husband was life-flighted today and had a surgery that lasted eleven hours, the results of which have so far been unsuccessful. it’s funny to me how the ones who don’t want to live get to linger, and the ones whose lives are so detrimental to the well-being of others can be snatched away in seconds. i’m writing about the need for a patch in my abdominal wall… and another’s in need of the patch in his heart. the patch in mine worked. the patch in his isn’t.
i’ve been volunteering at a christian academy since september. the kids are out for spring break this coming week. wednesday next, i’ll be presenting at the school’s chapel service. i’ll be talking about the fruits of the spirit — one in particular: faithfulness.
i’ve shared some of the details of my story with the gals in the bible study. the other day, one of them commended me for my faith. i was surprised by the compliment.
there’s some passage in the bible about how we’re fearfully and wonderfully made. fearfully. yes. absolutely. i am full of fear. wonderfully? i call bullshit.
i was browsing through netflix and came across the theory of everything. i can’t watch the whole thing. i can’t. i HATE seeing how the body is ravaged, how its destruction ruined so much, was so catastrophic to so many and in so many ways.
what i have, it’s nothing compared to lou gehrig’s disease. my body isn’t rotting. but i recognize the anger stephen hawking may have felt in the days… the decades after his diagnosis. i’ve been PISSED at mine for almost all my life. and i’ve been pissed at me for being pissed because, as my mother has said over and over again, i can do so many things.
it’ll get worse as i get older, though. and at some point, i’m not going be able to keep my muscles from spasming… and the heart… it’s a muscle, too. most of the time, i think this can’t come soon enough. i dread it, though. i dread how this disability is going to break me.
this is the story i’ve chosen to tell… this one of anger and hate and fearfulness. i played the part of the unreliable narrator. i’ve become so accustomed to the role, i don’t know how to make the necessary corrections.
what was i thinking? how could i possibly begin to talk to ten-year-olds about faithfulness?