I think of Susan Sontag when I’m in the bathroom. The mirror is high enough that I have to tiptoe to see my lower belly, which is where the cannula goes; the river mouth of my insulin pump, that has kept me alive for the wondrously long time of exactly three days. I need to change it now, to rip it out of my left side and shoot a new one into my right; every three days there’s a new cartridge, a new tube, a new cannula, a new spot in my abdomen that takes the hit. And when the needle makes its way into me and leaves a hole, and when the tube clicks and the slow stream of insulin is forced inside, I think of Susan. I think of Susan and her essay, “Illness as Metaphor”; I think of how she describes illness as “ the night-side of life, a more onerous citizenship ” . The kingdom of the well, the realm of the sick: a double passport situation. And sometimes, unfortunately, we’re obliged, at least for a while, to travel to the underworld and identify ourselves as citizens of that “other” place. Say, then: what if that other place came to you? What if you had to live there? It’s tricky to talk about chronicity in illness, because it’s not a generalized, shared human experience. Almost all of us can revel in our feelings of love, longing, loneliness; we can wonder at the natural world and share in our curiosity for it. We can whisper about our fear of death. But how can someone with rheumatoid arthritis explain to you what it is to live in constant, searing joint pain? My mother cannot clap: her hands, now deformed, cannot be straightened enough to be put together. I don’t know how that feels. Chronicity is tricky.

Every single waking moment of my life I’m thinking about my glucose levels. It’s an open tab on the browser of my brain, forever. It doesn’t rest. Even my sleep is thin, vaporous, like a white sheet caught in a breeze; my ears are primed and alert for the beeping of my glucose monitor, which would mean a drop in my sugar levels; I’d need to get up quickly and drink some orange juice or take a glucose pill. If I don’t, sleep can turn into a coma. I sleep with my insulin pump connected to my body; the tube is only 40 cm long, so there’s a lot of tugging and tangling around. The first thing I do when I wake up is inject insulin, because my metabolism, like everybody else’s, is waking up too, which includes secreting glucocorticoids: emphasis on gluco. This is why breakfast is generally not recommended for diabetics, especially the classic and insidious high-sugary ones, with juices and pancakes and cereal. Here comes chronicity again: I analyze every single thing I put in my mouth, because I need to know how many carbohydrates it has. I benefit immensely from planning my days, from knowing exactly what and when I’m eating; the when is crucial too. My insulin pump is programmed, by me and my endocrinologist, based on the time of day and the number of insulin units needed to compensate for the grams of carbohydrate I’m taking in . I need less insulin at noon, my ratio is higher in the evening. My body changes every hour, my mind does too; my emotional state will impact my glucose levels. Long hours of work mean more insulin. Have I woken up too early? More insulin. Am I stressed this week? That’s cortisol, that’s a glucocorticoid: more insulin. The inverse is true too: what if I’m suddenly scared or taken aback? My mother calls me, her pain is worse; my friend argues with me; my partner leaves me: panicking makes my glucose levels drop. An overthinking brain uses up too much fuel: cut the insulin, please. These ups and downs happen all the time, often on top of each other, simultaneously. That’s chronicity. Our organisms are in constant communication with our environment and our fellow human beings: if your organism happens to be chronically ill, you’re going to have to add that factor to absolutely everything.

That makes me think of Susan again. Am I a permanent resident of sick-city? Do I even have a “ healthy ” passport anymore? Can I cross the border? It doesn’t seem like I can. But then again, Susan, I’m also immediately suspicious of binary responses to questions: you’re either healthy or sick, sick for a time, then back to healthy? I like Lina Meruane’s approach better: she’s a brilliant Chilean author who also happens to be diabetic, and she talks about illness as “normality”. She turns the binary to a spectrum, and builds a huge space for all the little shades of grey to live in. There are degrees of illness, degrees of health. One traverses the spectrum constantly; one doesn’t just stand around a pole forever. I’m healthier than a lot of people I know, in a lot of ways. You can be emotionally healthier, for example. Would you rather a toxic, chronic marriage or an insulin pump? Both can kill you. Comparisons like this are silly, which is exactly my point; illness, health and human beings are extremely complex and varied, very difficult to categorize. There’s a lot of normality in my diabetes. If I look at it that way, it helps me communicate and connect with other people’s varying degrees of health and sickness. It opens up a space; it allows me to identify as something other than just “chronically ill”.

And then again, these are just words.

And then again, the way we speak to ourselves is important. The way we narrate the situations we’re in ends up changing them, and us. We attach meanings to reality, and reality is transformed accordingly. So hey, use your words but use them wisely.