Sometime later this month I will inject myself with insulin for the three-thousandth time. I take two units of fast-acting insulin before each meal, and 10 units of basal insulin before bed each night. I have not done the math on how much insulin this means I have ingested in total, but let’s agree: it’s a lot.
A unit of insulin is defined officially by the Worldwide Health Organization’s Expert Committee on Biological Standardization. I don’t often get verklempt over bureaucracy, but I do feel a rosy glow when I imagine this Expert Committee at work defining the measures that keep me alive. Incidentally, a unit of insulin is also loosely defined as the amount of medication required to regulate the blood glucose of a fasting rabbit. It’s very easy to give diabetes to a rabbit, apparently. No word yet on how rabbits feel about this.
Two years have elapsed since the beta cells in my pancreas went belly-up and I became an injector-pen carrying member of the diabetes mellitus club. Certainly, the time feels like longer than just twice around the sun. Three thousand shots better describes the time span, but even that feels inapt as a description.
Oddly enough, whenever I try to describe this problem with measuring time, I think of show tunes. I am not one for musicals under just about any other circumstances, but many years ago my wife won me over to the Rent soundtrack through sheer repetition. During the era of our initial courtship, I often heard “Seasons of Love,” the final song on the cast album, which asks of the listener:
How do you measure, measure a year?
In daylights, in sunsets?
In midnights, in cups of coffee?
These simple lines left an impression on me because, at the time, life felt incredibly rich with a possibility that mere words or hours could not describe. Emotions warp the whole enterprise of measuring time. And that’s no less true when the emotions are negative: how exactly do you measure the time you spend with a disease that will last for the rest of your life? Can you ever regret the passage of time when the alternative is to gather no years at all? While we are on the subject, have I put to use the time that I have been given by the grace of modern medical treatment?
Those questions are serious, and I do find myself wondering them often, but all of the plausible answers sound ridiculous. I could put forth some numbers. Some more measures. A ratio of time spent with my kids versus time spent doing mindless errands. Some raw data on waking hours versus sleeping hours. But what would the numbers mean? I don’t think it is possible to measure the return on not dying. And yet I feel obliged to try.
A few years ago, the essayist Tim Kreider wrote a New York Times op-ed called simply “Reprieve.” The piece begins with Kreider recounting that he was almost killed years earlier while in Crete. He was stabbed in the throat, but the knife missed his carotid artery by a millimeter. He survived by just more than a proverbial hair’s breadth. “After my attempted murder,” he wrote, “I wasn’t unhappy for an entire year.”
His essay, among other things, is about this year-long grace period, and how the glow of gratitude burned brightly but still gradually dimmed. After a year’s time, Kreider found himself once again “yelling in traffic, pounding on [his] computer,” and generally losing his sense of awe at dodging death.
The slow migration from tall to grande to venti in hardcore fanatics is not due to Starbucks marketing mojo. The arms race inside your head is ongoing and real.
Within days of my first insulin shot, I was clambering over a jungle gym in TriBeCa while chasing my two small kids. By the end of a month, I was writing and reading again after months of a strange period of exhausted mental immobility. Mind you, I was not filled with ridiculous happiness straightaway—I was still adapting to the difficult regime of offsetting carb counts with insulin shots. But emotions like jealousy and envy and self-pity all just dried up and withered to nothing in the bright sun of my good fortune. Even empty glasses were glasses that I could imagine half full. I no longer fit into any of my old clothes because I was now a scrawny 155 pounds on a six-foot-one frame. I used this as an excuse to throw out anything that I did not like and splurge on new dress shirts, designer jeans and fitted jackets. Why did I ever bother to keep at things I didn’t like?
I would sit quietly at home in the night while everyone else was asleep and steep in the splendor of still being around. But still: little by little, regular sentiment began creeping in. Small, stupid problems at the office began to accumulate and stick with me through evenings and weekends. One night in the fall, my two-year-old son woke us every few hours with complaints about nasal congestion, and I complained harshly to my wife about how little sleep I would get by the time morning came. There was nothing wrong, per se, about this complaint. Except that it revealed a loss of that once perpetually rosy perspective. Kreider’s Law proved universal in the end. “You can’t be grateful to be alive your whole life,” he wrote.
Two years into this second major period of my life, a period I think of as My Time of Not Dying, I am back to normal again: I stage childish mini-tirades over traffic jams, or the failings of my computer, or the empty milk carton someone put back in the fridge. There is no doubt that I am no longer so unfailingly happy as I was in that first year. Am I happy enough? I don’t think I’m unhappy.
In the seventies, behavioral psychologists studying hedonism determined that irrespective of what happens in time—whether you win the lottery, or lose your marriage—the average person returns to his or her default emotional state. The human brain is a notorious compromiser. It seeks the lowest rung on the ladder of equilibrium in all things. It effortlessly adds neuroreceptors to the grey matter of smokers in response to nicotine exposure; almost at once, a single drag just can’t provide the same fix. But let’s pick on coffee lovers and not just smokers. The slow migration from tall to grande to venti in hardcore fanatics is not due to Starbucks marketing mojo: because caffeine blocks the absorption of adenosine in the brain, the brain of a coffee drinker adapts by producing more adenosine receptors. The arms race inside your head is ongoing and real. Is a sustained feeling of happiness or gratitude bound by the same soulless laws of hormonal supply and demand? If so, then one’s whole life could be mapped out in a ratio of chemicals. Rather than live in a world of slippery emotional labels like “joyful” or “elated,” could we speak in precise terms about levels of dopamine, serotonin, oxycontin, and endorphins in the brain?
Perhaps I was always going to be happy or unhappy at this point in my life, assuming I was still alive; and maybe there is a basic default setting for who I am, no matter how good or bad life is. And that’s the way I am and will be, short of potent pharmacological intervention. Maybe the whole post-diabetic gratitude thing was just a brief fling that I had with euphoria. And now it’s back to our regularly scheduled attitude.
It is quite unnerving to take your hands off the wheel of your emotional life and discover that—rather than running off the road in the absence of your active control—the car that you are in keeps going on. Somewhere in the lobes of my brain, in places that even our best science cannot yet precisely manipulate, the chemical processes that define my baseline emotional state are quietly working away. So much of how I feel about the time I have left is defined by a group of cells that work in secret, measuring out their hormones and laboring away like a Worldwide Expert Committee on Bryan’s Emotions.
There are now strict rules that govern how much and what I can eat on a daily basis. In addition to insulin therapy, I am now on a strict—and permanent—diet. I allocate roughly 30 grams of carbohydrates at breakfast, 45g at lunch, and 45g for dinner. I can have snacks of 15 grams a few times each day.
Here are some reference points to make all these numbers tangible: an eight ounce glass of orange juice has 26g of carbohydrates. A slice of Pepperidge Farm whole wheat bread has 20g. A medium-size French fries is 44g. Each meal, then, is a game of addition and subtraction as I put together a meal that will be filling, nutritional, and under the prescribed carb count limit. If you hate math, then you’d really hate diabetes.
Every few months I see the endocrinologist who first worked with me to develop an insulin routine. “You are the perfect person to get diabetes,” she has said more than once.
For some time now it has been common for non-diabetics to disavow carbohydrates. There are numerous health bloggers and trendy diet gurus who insist that sugar—that most famous of carbohydrates—is in fact toxic. To call sugar toxic is not entirely wrong, but it is wrongheaded; you can’t get all good v. evil about carbohydrates. To do so would be like disavowing the oxygen in the air because it causes cars to rust.
The chemical formula for glucose—for the simplest of the simple sugars—is C6H12O6. That means glucose has six carbon atoms, 12 hydrogen atoms, and six oxygen atoms. Also known as blood sugar, modest little glucose is in fact the single most important chemical in human metabolism. Glucose is the fuel that runs the body; without it, the cells starve and the body dies, end of story.
Of course there is always such a thing as too much of a good thing. Too much sugar in the blood corrodes your organs; it wears at them like saltwater on boat bottoms or beaches: the heart muscle erodes, the eyes falter, toes and fingers go numb, infected, gangrenous.
As a diabetic, my physiological problem is that I can’t create the chemical that carries glucose into the trillions of cells that make up my body. I have lost the innate ability to sense the balance in my blood and then measure out the proper hormonal response. What my body can’t do on its own, what the cells and systems of the vast bureaucracy of the body can’t any longer handle on their own, I now manage via constant mental calculation and control. With all apologies to Descartes—I measure, therefore I am.
Every few months I see the endocrinologist who first worked with me to develop an insulin routine. “You are the perfect person to get diabetes,” she has said more than once. She means that if anyone has to get this disease, it is best handled by someone slightly neurotic about order, good with adding up numbers in his head, and prone to analytical fugues. And could there be a better era in which to stumble into the path of a chronic disease like diabetes mellitus? This is the Age of Big Data, after all. Almost half of the planet is plugged into the Internet. Our mobile telephones are ravenous data-devouring machines. Bold new devices debut each year with no purpose except to measure and report on narrower and narrower bands of human behavior: steps taken, calories consumed, sleep cycles achieved. There is no apparent end to what we can measure and put to good use, if we are methodical and disciplined enough in our counting and categorizing.
Arguably, the miracle is not how big our data sets are now, but how much power we now realize resides in the miniscule, the minute, the singular facts and measures that make up an ordinary day in an ordinary life. There is an echo here of the Atomic Age—the period not long after Los Alamos scientists and engineers succeeded in detonating history’s largest bomb to date using the humble fuel of 13 pounds of plutonium. Media and pop culture quickly adapted to the idea that tremendous power lurks in the nucleus of all matter—and wasted no time in creating super heroes and visions of the future where nuclear power was the fuel for lasting peace and prosperity. Time alone can tell us if the power we unleash in data will go further in creating lasting change.
There is no enemy called diabetes. The only enemy is me. I am the sickness. The sickness is me.
Living in an era of innovation and discovery has its benefits, but it also has the troubling side effect of creating a false sense of inevitability. As if by identifying, defining, and naming new things, we take control once and for all of the vast unknown that lies beyond the thin layer of what little we know about our world and ourselves. This was certainly the case for me, after two years of treating and beating back this mortal flaw in my immune system: I had the mistaken impression that I was in control. I learned otherwise just a few months ago when I visited a new general practitioner for an annual physical.
At first, the visit went well. This new doctor deftly gathered up facts on family medical history while we traded stories about our kids. He suggested a few vaccines due to my diabetic condition. I consented. Then he sucker-punched me with a sudden new prescriptive: “So let’s put you on a tiny amount of blood pressure medicine,” he said. “Standard treatment for a diabetic.”
For a moment, I looked at him as if he’d just admitted to stealing my wallet. I pointed out to him that my last three blood pressure readings were all spot-on normal. The most recent read-out was taken by my endocrinology just two weeks earlier, in fact.
A few days later, he emailed the results of my physical. I was healthy across all measures, and his write-up made no mention of blood pressure medicine. But the idea had been put forth, and it continues to trouble me. Maybe I don’t need to take this new blood pressure medicine just yet. But let’s be honest: am I so foolish as to believe that I will never need to add another medication to the mix? Do I really think that by counting carbs and injecting a few units each day that I can pretend to be fully normal again? Even if that were true, the inevitable fact remains that in time there will be something else to measure and manage when it comes to the question of my health—or anyone’s health. Measuring, naming, scheduling, managing—those actions are all powerful, but they are not at all the same category as control. I can do plenty of the former. Of the latter, I have no power at all, not really.
Before my diagnosis, I thought of sickness as a separate state; to be ill, to suffer disease was to leave the land of the healthy and enter into a new place, possibly never to return. There was a simple binary relationship: on one end, health. On the other end, illness, or, let’s just be frank—death.
Gradually I have come to see how the truth is far more complicated: the disease does not exist. A diabetic is at war with himself, both literally (in the case of the immune system) as well as figuratively (in the case of what it takes to overcome dietary habits). There is no enemy called diabetes. The only enemy is me. I am the sickness. The sickness is me. You can’t separate the two.
I recently discovered that many scuba diving agencies refuse to certify diabetics. For years in the United Kingdom, there was an outright ban on diabetic divers. Honestly, I never had much interest in scuba, but it is disturbing to learn that such obstacles exist. I also apparently cannot be licensed to fly a commercial plane. It would be rather late to pursue a career as a pilot, but still, it is rattling to realize I am shut out from such a second act.
Sorting through my books the other week, I paused over my copy of Cormac McCarthy’s The Road. I had not thought much of the book when it came out. I saw the Viggo Mortensen movie in 2011. The visuals left an impression, but I didn’t feel all that much regarding the story then, either—a dark, blighted post-apocalyptic world was just a theoretic future, nothing to fear. If it ever happened that the world came to such an end, then that would just be something that I would have to try to navigate through. But looking at the book the other afternoon, it occurred to me that I wouldn’t be able to deal with a world where mass production of insulin disappeared. Even if I, like the father at the book’s center, had the wits to avoid the predations of the world around me, before long I’d succumb to the faulty wiring in my blood.
I am doing this. I am living. I am surviving by dint of what I do, and not just because I wake up every day.
Maybe I always should have known that limits like this existed for me. I was never really going to make it long if the world was thrust into a nuclear winter. I was never going to rough it very well if the power went out permanently. I was probably never going to become a commercial airline pilot. The truth is that what has gone out of my life is not possibility, but myth: I can no longer subscribe to the myth that I can deal with anything that happens if given adequate time and preparation. Limits are more real. One is left to measure again and again what can be and what cannot be true.
If there is anything that I miss most about the world before, the world that pre-dated this stage in my life, it is how casual it was. How living, eating, sleeping, and so many other things were not deliberative events. How I did not have to send doctors off to speak to one another and then gauge for myself how to handle their advice. How I didn’t count carbs, didn’t reckon how many days I could go with how many needles or how many insulin pens to pack for a vacation that spans more than a week.
And yet: as I approach two years with the condition, my condition and my management of it is both a hassle and a point of pride. I switched insurance plans and had to re-calibrate dosages with slightly different synthetic insulins. My average blood sugar reading has been elevated in the morning of late. I have begun experimenting with an extra unit at night. I may start taking a third unit with each meal. But these are all small adjustments to the measurements that make up this collection of days, hours, chemicals, and stimuli that I call my life. I am doing this. I am living. I am surviving by dint of what I do, and not just because I wake up every day.
In this new time of not-dying, I am actively responsible for my continued existence. Living is an act of measurement and will. Nothing is taken for granted. Nothing is for sure. Taking insulin, eating select foods, minding my blood pressure: these are not the same thing as control, but all these actions in a series of movements are what enables me to continue, to survive, to endure. Endurance: the paragon of Midwestern virtues, of frontier mentality, of American resolve. If I live to the life expectancy of a male child born in my birth year, then based on my quick arithmetic I have a little under 47,000 more insulin shots to go—and maybe far more than that, too. That’s a long time, by just about any measure.