A few years ago the following blog was written by Jess Drexler, a 22 year old type 1 diabetic, diagnosed at age 6. It is a masterpiece, such beautiful writing, I wish I could write like that. Her Mom gave me permission to share it here.
"Cold hard truth. In the palm of one hand I am holding one bottle. It is a bottle of Novolog fast-acting insulin. In the other, I am holding one 50u syringe, drawn back to the fourth marker with no breach, because I have become an expert in transporting air bubbles back into the air. But, for a diabetic, it is not just about the medicine. It is the intricacy and the intimacy we develop with the illness, finding ourselves reasoning with her, or begging for her to stop. It’s in the fridge, cupboards, and cabinets, and it is the clear liquid that my life teeters on. Diabetes poses a very humbling reminder every time we get up in the morning. The one thing that can kill us is also the one thing that keeps us from dying, and I’m holding it in my hand.
I still remember the last night I spent alone, before this world of vials and syringes… It was dark outside, so the lights inside created a little reflection on the window of my small, 28 pound, 6 year old body. The street lights were illuminating a visible shape from the shadows to the pavement. I saw the bugs dancing around the streetlights in their own crazed rhythm. They’d enter the shadows and go unseen, but then the light would sweep them up again, flying in intricate circles and bumping into each other, fighting for the light. I always wondered why those bugs wanted the light so badly, but only came out at night.
I didn’t know that would truly be my last moment I remember, being alone.
Now, we are always together, I am always with her; we share the same body, the same home. 17 years. That’s 204 months, 886 weeks; that’s 150,000 consecutive hours we’ve spent, body-to-body, sharing the air around us.
When people ask me how I can do it, I lie.
I don’t say that I still hate every shot as much as I hated the first one when I was 5 in a white room in the pediatric unit. They would grab my arms by my wrists, and pin them above my head on the white pillows, and next my ankles, until I couldn’t wiggle my way free. Then the nurse would enter, with that seemingly sinister smile, holding the syringe, she’d creep up to me. I knew I couldn’t escape the fear, all I could do was try to understand it. After a couple days, I understood. I understood that arguing, fighting, and running away wasn’t going to set me free, I understood that kicking and screaming wasn’t going to change anything. But,when people say “I could never do that,” or “that looks like it hurts,” I tell them “well, you do what you have to do.” But this isn’t the truth, none of it is. It does hurt, the needles and the pokes and sticks don’t get more pleasant as the days go by.
But you begin to understand, you begin to see what it is truly like, to not have a choice.
So, when people ask me about my diabetes, without having a clue about it, I lie. Because maybe, the truth isn’t what they want to hear.
Maybe it is because I can’t say it’s inconvenient having to make sure I have my phone and keys, wallet, monitor, test strips, short-acting insulin, long-acting insulin, syringes, lancets, and glucose tablets every time I leave to go somewhere.
I can’t say I almost died last weekend because I ran out of glucose tabs at my apartment.
I can’t say how ■■■■■■it is that I have to make the walk into bleach-greased bathroom stall and put one leg up onto the toilet to give an injection because I’m embarrassed to do it where people can see, where people can stare.
I don’t tell what it is like to have a needle fall out of your pocket in a gas station, and hit the floor like steel on a mirror. I don’t tell them about getting pulled over, searched, and detained, for a needle, my lifeline, sitting on the passenger seat.
When people ask me how diabetes impacts me, I lie.
20,000 injections, 31,000 finger pokes, millions in medical bills, and a slew of misconceptions, and she shows no sign of stopping. She doesn’t stop reminding me that she has control, that she watches my every move, my every moment, she is there, waiting for a mistake so she can slip inside. She reminds me that I have to understand her better. She tells me I have to test more, I have to change my basal rates, or change my ratios, I have to study her and study myself, and never forget that I’m not alone. She keeps me up at night, aching for a drop of blood, or a half-filled syringe. Everyday, every hour, every second, since that night the bugs were dancing in the street lights, she is with me.
I have diabetes.
This is the truth.
Jess Drexler