hidden - the tired girls

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.

Comments

[Rosa]

You write so well that I can feel your heartache. Hang in there.

[Nickie]

Dear One...I am so glad that you shared this. It said that I am not alone; that someone else out there is daring to be honest.

In sharing, the suffering is diluted I think, at least somewhat. It is the essence of courage.

Thank you...now go have a cup of tea...I have NO idea if it is clinically good for diabetes but it is good for the soul. I will have one with you.

[mati]

windowsill, i feel i finally did really meet you... like in my dream. thank you so much for sharing. you are a brave, poetic and heartfelt writer. i would read books, or many more blog entries my friend. i feel i can relate to these highs and lows, you're not alone. speaking of which i'm tired now, so i'm going to go to bed.
be well xo,
mati

[abby]

hey there-
never, ever feel that you are oversharing-this is about you! Thanks for sharing true thoughts, feelings and emotions. It makes you seem more real and makes others (like me) feel like they have kindred spirits out there somewhere (cheesey but true). I love the Franny and Zooey reference. You continue to inspire me daily on flickr and have now made me a loyal reader-thank you.

[KellyLove]

Thanks for putting this into words so articulately. I have a hard time even saying here that I am a fellow diabetic (diagnosed 2005) because it is difficult to describe to people what it is like when they can't see it or feel it. From one to another though, thank you.

[jerusha]

thank you, everyone.

[shari]

thank you for sharing yourself so openly and honestly. it takes courage. i so enjoy reading your posts.

[anne]

Thank you for having the courage to write such a moving, informative and eloquent post. I'm already a big fan but my admiration just went up tenfold.

[elsa]

Your writing reads like I wish I could write...very tactile, very revealing.
I've been diabetic since 11 years old...that was over 37 years ago. I rarely felt something central was taken from me because of the diabetes. With diabetes, my life did become less active, perhaps less full. Definitely, less free-form.
But diabetes wasn't the thing that had made me feel robbed. My mother was a quadraplegic due to a severe form of a neurological disorder which, I was told when a child, worsened because of my birth. Diabetes was acceptable to me because it wasn't MS.
Finding the right insulin(s) recently has added back some free-form. Receiving the right instruction (from a diabetes educator who is also type 1) on how to use the insulins effectivly made all the difference in the world. I wish you well.

[Kerri.]

This post is beautiful. Truly.

I have been living with type one diabetes since I was a very small child and only now, that I have reached the marker of 20 years with this condition, do I truly appreciate all that I have worked so hard to preserve.

My best to you in your journey. It would be an honor to add you to my blogroll.

-- Kerri.

[birdie]

This is one of the most beautiful posts about diabetes I've ever read. You make me feel like I'VE come home. It's good to know that we are not alone. Thank you for your generosity and eloquence.