dear crohns:
in a few hours, i will be 29. how did i get so old? i'll tell you how i got so old. through hard, hard work, motherfucker.
there are a lot of people who will understand exactly what i mean by this, because for you, too, every day is hard work; physical work. you will understand that 365 consecutive days of this living/existing thing --- nay, 10,585 days of this! --- is no small feat, particularly when eating is hard, and moving is hard, and staying awake is hard. you will get this concept without my even explaining. and it's worth just a moment to remind myself that being part of a community like that, like you --- even if it means having crohn's disease for 19 years and counting --- is a privilege that anyone would be lucky to claim.
a year ago today, i was lying flat on my back in clothes someone else had to dress me in. (thank you, juan.) i couldn't move side to side, sit up by myself, take a single step unaided.
(self, you could not eat. you could not move. and look at you now. you are eating and moving. you have a job, self! a great job! and you finished a book, self! you live in fort phil collins, the greatest fort ever!)
these italics, unfortunately, are not really mine. i'd like to be able to internalize the idea that i'm making progress, that all this effort isn't worth nothing. the effort it takes to get out of bed in the morning (i can get myself to a standing position in less than 90 seconds now). the effort it takes to walk on my bum leg or stay awake or eat what other people eat or drink what they drink. but the greatest effort of all is keeping up the veneer: the veneer that i am happy, that i am energetic, that i am content, that any of this means anything to me.
i want to be honest with you, crohns, because you are the only people with whom i feel i can really be honest: i am not okay.
physically, of course, i've been worse; i am practically an olympic champion compared to one year ago (ideally one of those deadweight lifters with the weird shorts). but i am not here anymore. i am just pretending to be here.
the hardest thing now is not pain management. it is leaving my house, talking to my friends, making myself look the way people are used to seeing me, with my content expression and my sarcastic comments. it is very hard to make plans, to feel happy about things. it is hard to pick up the phone or to feel anything. but i know it is required of me, and there is a little part of me --- the part that has always pushed harder and harder no matter what --- that insists that i must show my face, smile, make the jokes people are used to hearing from me. and so i do it. but --- and i know this sounds pitiful, but truly --- it hurts to do it, physically, in the same way that eating a slice of pizza hurts when you are in flare and you know you really, really shouldn't. it doesn't even taste good.
i know this is a gauche thing to say. to be a person of merit, or even a person at all, it seems you have to show that you are a fighter, that you are trying, you are happy, you are determined, you are present. onward, onward, onward! if not, you're weak or silly. people tell you, "it's okay! don't worry! we'll have coffee and catch up and i'll tell you great jokes and it'll all be better!" or "just get it together, fool!" and these people, the soft-love people and the tough-love people, are very nice, well-meaning people. but they don't get it, crohns.
this makes the whole birthday thing especially difficult. wonderful, very kind friends and family, who i love very much, have things to say that begin in "happy" and end in an exclamation mark. and i really do appreciate their friendship. but it puts a very fine point on the distance that is growing between me and them, the success i'm meeting with as i leave my apartment each day and put on my Great Big Smile and tell everyone how it's so great to see them.
although it's unpleasant and ugly and unattractive to say so, this is the truth, crohns. of the whole story, this is part.
thank you for staying here at sempre through the middle of this narrative. one thing we know about any narrative worth its salt is that it has a natural arc: what goes down, if we wait long enough, must come up.
love,
kara
