a very lovely gift: hidden (detail), jen corace
lately i've often felt so out of it i can't think of anything to say, and i think i realize why. i ran into an old professor today at the apothecary, and he saw my diabetic supplies and told me that diabetics should drink more coffee. there are studies, he says. i have been diabetic for fourteen years, but i still feel frustrated when i hear such misunderstandings of what it means to take care of this ... disease. (god, i hate that word. i tried not to write it down. but there it is.) and yet it's something i don't talk a lot about with too many people, because they often seem uncomfortable about it. we like our days with sunshine.
but i am starting to feel the ghost of its presence as i write here, a part of me that is holding back. i don't know what the rule of etiquette is on oversharing (and where is that line? everyone's is different), but it's starting to silence me. and if i can't talk about it here, then where? lately this sweet stranger is so much of my life, that i will myself for other things to think about. but sometimes there really is no energy to reflect on the day, or days - only enough to get through them. that sounds depressing and i think that's another reason we don't talk about such things, the tired girls, or any of our other quiet sufferings, we don't dare sound depressed. it reminds me of franny, curled up on the couch with bloomberg, tired of all the tearer-downers, and zooey looking out the window and seeing a girl playing with her dog, and saying, there's such good things in this world... i love that little moment, it's what i look for. and it's true. it's only lately that this has all been beginning to wear on me. i read over some of the posts i've written here, and it all seems so... quiet. when did i become so quiet?
i was diagnosed on christmas eve, on break from my first year of university. i was 95 pounds, but i had always been thin, so i didn't notice until my dad saw me. i will never forget the look on his face. the diabetic wing was closed because of the holidays, so i didn't meet any one else my age with diabetes for months. we had a skiing trip planned for vermont later that week, and i was so impatient to go that it didn't even hit me until we were there that i wasn't allowed to ski (the only way the doctor would let me go), and that i would have this for the rest of my life. i remember crying in maddening frustration trying to measure my pasta and all the ingredients separately from everyone else's. i remember spending new year's with a migraine from too little sugar, then too much. my boyfriend and i broke up at the end of christmas break (which happens a lot in first year, but this was definitely the reason why. it just seemed too much for someone else to handle.)
diabetes is so prevalent, everyone feels as if they understand it. complete strangers feel entitled to ask, "should you be eating that?" others ask if you ate too much sugar (i'm the insulin-dependent kind... which is auto-immune, so you can't 'get it' that way). doctors call you 'noncompliant' (which sounds so star trek...) if your life doesn't fit neatly onto a chart. you test your blood sugars everyday, many times a day. you measure doses of insulin for every activity - every activity: exercise, meals, stress, even rest. how do you measure how stressed you will be ten hours from now?
i once read that having diabetes is like playing chess in your head while you are reading a book. that's true; it often does feel like you are distractedly trying to decide which move to make next. you have to plan your life, be self-aware; you don't have the luxury of being truly spontaneous or on automatic.
having a high blood sugar is like being immersed in toffee - your thoughts, your actions, everything, feels thick and in slow motion. having a low blood sugar feels like the floor underneath you is gone, like you're in a shel silverstein house, drawn without a floor - you can literally feel the sensation of freefall, your heart still up in the air while you plummet to the earth. the balance between is what you live for.
on the other days, i have a hard time accepting that i'm not able to do what i had planned, that the most wise thing i can do is adjust my insulin and drink lots of water and rest. in some ways it sounds like luxury. but when you want to do stuff and find that without warning you're not up to it, it's frustrating and makes you feel held back, unfulfilled.
i know i am not in this alone. i know that we all have something we find hard to bear. but sometimes it feels like i lost part of my self. and that bothers me most. i can see how it has shaped me in so many ways. made me feel old. made me worry more, hesitate sometimes. but it has also made me able to trust my instincts, to concentrate and pull the focus inward when i need to, to make connections between the most insanely different things, to understand the details. to be understanding with others. and to hold dear the best people, the friends you love because they immediately know what you mean when you say you are high, or stop for a snack on a road trip without asking, in spite of others' protests, because they know you need food now.
in this fledgling space, writing here still feels like my journal, so it's strange to think that others may read this. but writing has always been a way to express myself honestly, and lately avoiding something that is such a big part of my life has made me feel like i'm holding my breath.
i think on these things.
