Infancy by Ashlee

This post is by Ashlee!  She is a wonderful ACT1 member who is currently working on designing t-shirts for all of you.   You’ll have the chance to learn more about her, as she is now joining us for regular blogging.  Most weeks, look out for her posts on Wednesdays!

Today I am thinking of beginnings. Not in the usual vein of having a clean slate, a sprouting seed, or a new day. Today was my anniversary of leaving my hometown of Salt Lake City for New York City, to “see how things would go.” Back then, I really did think I was starting over with a clean slate, cutting ties and arriving somewhere new with just the essentials packed in one large suitcase and a cardboard box. This was my first big venture away from friends, family, security. Away from a strong support network, starting over with all new doctors and a new life, I had everything to learn about being an independent adult, and every challenge of being a type 1 diabetic , going it alone. I was certain I was strong, I took for granted everything I believed about managing my diabetes and charged ahead into my new life, trying to carve out a what I had always dreamed of.

Yet  here I am four years into life in the big city and I am faced with the reality that no matter how many circumstances I’ve altered  in my life (or have altered for me) I am still the same person, even underneath the relentless weight of responsibility and activity of daily life. On the plus side, I can take that as a great sign of strength, of security and a reason to trust my instincts.  However, this is an opportunity to be frank: My A1c has never in 23 years been below 8 and several times it has been well above that. It’s not something I like to admit out loud. It’s like a dirty little secret I keep from friends and family, and last week in my endocrinologist’s office, he read off my lab results, “Cholesterol: perfect, TSH: no problem, Vitamin D: finally acceptable, urine: all clear, A1c: still…no significant change.” It’s not like there is some kind of complacency in my heart. I expect the A1c to be different, even though it is not. My blood tests are exactly where I want them to be, except when they are not. I expected my life to be different, for better or worse by now, except that there are so many persistent things about being an adult with diabetes  that just….are not different. So there are these times in your life when you recognize the difference between yourself and the circumstances, and you have to cut a deal.

Currently I am on vacation.. I came back to Salt Lake City, Utah. I am staying in the house I grew up in. My brother and his wife just had a brand new baby boy. When I sat out in the yard holding him yesterday, it was the kind of sunny day you don’t have in Manhattan, with the light shining down unobstructed and clean. I watched him sleeping in my lap, the kind of deep, impervious, uncomplicated but amazing sleep of a rapidly growing infant. The one word that floats around when people talk about him is “perfect.” He is, absolutely so. Not a bruise or mark on him, so symmetrical, soft, small and full of every hope that parents have. I  had a moment thinking about how impossible it seemed that I was ever so small, so new, so….possible. I had to remind myself that I, too, was once that new and untried. There was no way to know at infancy that seven years later  I would be diagnosed with Type 1. I am sure it must have been just as inconceivable for my parents, as it is when looking at my nephew now, that such a thing would happen. All you can have at that point is a lot of hope and happiness and expectation.

I expect that he will be strong. And stubborn. Independent. Curious. Smart. Those are the traits you inherit when you are a member of my family. He will grow, go on to do and learn so many things. And there will be sad days and disappointments, but when I look at him I don’t want anything to ever slow him down, the same way nothing now should intercept the basic needs of feeding, changing, sleeping, growing that is his life now. If I have that hope for him, why is it that much harder for me to have those same hopes for myself? Is it that more days turn out off the mark? Or that I have been through it and through it and through it all these years and don’t see it change? That I forget that I was really born on a cold day in January seven years before I became the diabetic version of myself? If I truly believe life In New York can’t cure me of everything I ever wanted to be different, that I am the same person as always, then somewhere inside I MUST be the person I was born to be, not the person diabetes has made me. That person, who was born to be strong, stubborn, independent , curious and smart, ought to be able to change. I should be able to get my A1c below 8. I should believe I am good and capable and hopeful, even if my blood sugar is off the mark. And if it’s spot on, I can get it to stay there more often than not.

So I have spent my time wisely on my vacation. I hold my nephew, because he is the sweetest reminder of what I want my life to feel like. I go to bed on time. I test at 3 am. I do my yoga when I get up, even if I don’t like it. I count my carbs. I test before and after meals. I take the time to do the things I have convinced myself are difficult to do when I am in New York, running for a subway or forging through traffic on Broadway.  The rest of the time, I insist on doing only what I think will make me happy.  I decided to start at the beginning. The most basic state. I have a lot of growing and learning to do.