Life Support

When your existence depends on glycemic control, blood goes in, data comes out, and self-tracking is not a choice

I was diagnosed with Type 1 diabetes at age 27. After that, my world, and my movements through it, became oriented around and articulated most effectually in metrics.

The numbers I see most frequently concern my blood glucose levels. Upwards of eight times daily I press a spring-loaded lancet against a fingertip, release the mechanism, and massage the fleshy digit until a neat globule of blood pools upon it. Capillary action sucks the blood — shades of red varying from scarlet, to ruby, or wine — into the test-strip proboscis of a matchbox-size analog blood glucose monitor. Blood goes in, and data pours out. I peer at the small screen as I wait for my body to talk in numbers.

Frequent blood tests are necessary since Type 1 diabetics produce no insulin — a peptide hormone secreted from the pancreas which allows the body’s cells to absorb glucose from the blood — so we are required to administer it ourselves, in my case via a subcutaneous injection. The test tells me how many millimole per litre (mmol/l) of glucose are present in my blood at that moment. From this I can tell whether I have administered my insulin dosage correctly, or if an adjustment is necessary. If no or insufficient insulin is administered, blood glucose will accumulate, causing hyperglycemia — hyper, over — which will prove fatal in a matter of hours or days if untreated. Elevated blood glucose wreaks havoc upon the diabetic body: Unable to derive energy from blood glucose, fat and muscle reserves are raided, causing rapid weight and tissue loss along with extreme fatigue; the body craves water as it attempts to flush out the excess glucose, causing an unbearable thirst. A prodigious amount of urine is produced in an attempt to slake it; ketones are released as brown fat is metabolized, which alters the pH level of the blood; the diabetic’s breath starts to smell of nail-polish remover; a stupor; a coma; then death.

My equipment never strays far from my side. My life support: pen and monitor and me, in corollary

Diabetics who have access to insulin but, for whatever reason, are not able to regulate their blood glucose levels with it will suffer periods of hyperglycemia that will result in significant, long-term ill effects: pathological damage to the kidneys, eyes, liver, heart, and nervous and circulatory systems. These blood-test results, then, yield vital data.

Consulting these metrics induces a response borne of optic rather than haptic stimuli. Once let and measured, my blood assumes a discrete visual identity: an integer on a dim screen. My least error-prone meter is as basic as they come — standard-issue NHS fare; a small blue plastic trapezoid that houses a gray-on-gray LCD display. It switches on when a testing strip — an oblong of stiff plastic about the size of a matchstick — is pushed into a slot below the screen. The display lights up with eight-bit graphics. A looping blood drop, dripping from top to bottom materializes and urges me to do the deed. I lancet my finger and feed my blood in. The screen now displays a spinning egg timer as at calculates and measures. Five timer rotations, or five seconds, and the result is delivered. Numbers, in that gappy pocket-calculator font, fill the screen, and they are authoritative.

The desired blood glucose range for Type 1’s is between four and six mmol/l pre-prandial and between six and 9.5 mmol/l two hours post-prandial. Pierce, squeeze, wait. Will I land in range, or fall outside? A reading of 9.5 mmol/l or higher indicates high levels of blood glucose, or hyperglycemia. This causes my heartbeat to quicken and my face to glow red. These numbers sign bodily ruination. I see over 14 mmol/l and I detect an abject dread.

It’s also of course possible — for my pen and I are mere pancreatic imposters — to administer too much insulin, which in turn will cause blood glucose levels to drop below four mmol/l. This is called hypoglycemia — hypo, under. Hypoglycemia is dangerous at the time it occurs, producing some striking physiological responses. Numbers below 4.0 mmol/l cause my tongue and fingertips to buzz. My lips go numb and I can taste metal. Below 3.0 mmol/l and my cultivated demeanor dissipates. All instinct, I pour with sweat and rage, and — with what feels like a heartbeat so violent it is evidenced on my breastplate — some beast within aggressively searches out glucose. Below 2.0 mmol/l and there begins a slow yet total dismantling of the world I stand in. In this place the buzzing envelopes me entirely; a white noise dominates as my surroundings recede. People and things and concepts become shapes and colors and gut feelings, increasingly distant and increasingly ridiculous. Amid the fug, an insight: My understanding of all that surrounds me, and my approach to negotiating my movements through it, is entirely protean — contingent on the glucose content in my blood. Fifteen minutes later I recover and harumph with wry laughter, finding it absurd that this caliber of perceptual shift — enough surely to impress the most seasoned psychonaught — has been brought about by such a mundane deficit.

Numbers below 1.0 mmol/l are produced by a body needing hospitalization, a body near death. They signal chaos. I strive to avoid both psychological and physiological disruptions and remain on the level. I am happiest when I see steady fives; their straight backs and cursive swell seem to beam at me. In numerical synaesthesia, a robust five has bronzed lithe limbs, a scarlet heart that beats strong, glossy rich brown kidneys, and gleaming white toenails crowning my pink feet.

I visualize the surfeit sugar crystals as cartoonish granular blocks, coursing through my bloodstream, scratching out memories. Is this why I forgot my keys the other day?

Given the parameters of the condition, it stands to reason that dining is a necessarily quantified affair. I scan for sugars, and count carbohydrates, quietly totting up totals with the speed of a cold reader and preparing my injection amid the dinner table talk. Carbs are not all alike of course: complex carbs — think brown rice — are metabolized slowly, whereas simple carbs — think refined sugars, including drinks, non-diet sodas, juices, smoothies, and yes, liquors — hit the bloodstream fast. Booze consumption is a dark art: Carbohydrate-laden beers, and spirits and mixers, task the liver with processing both sugars and alcohol; this phased metabolization causes irregular spikes and dips in blood glucose levels as each step of digestion is attended to. So I categorize the carbs I am to consume as simple or complex, and estimate how many grams of each are on my plate, considering auxiliary factors such as fat and protein content (which slow digestion), fiber (which aids it) and whatever is in my tipple of choice. My calculations at lunch today: 50 grams of carbohydrates, 10 of which are simple.

I must think beyond the plate, too. Exercising helps lower blood glucose levels — have I exerted myself today? Am I ill? Am I stressed? Can I note any other trends of late? With decisive movements, I administer seven units of insulin (a jog, good health) into an injection site on my stomach. Two hours later I test my blood, my body having responded successfully, or not. My equipment never strays far from my side. I need to have eyes on them before I leave my flat, and I stop in the street just out front to rummage in my bag as I check for them once more. My life support: pen and monitor and me, in corollary.

Contemporary diabetics dabble in blood as they try to manage and understand their bodies, but it used to be urine through which the condition was determined and defined. Diagnoses in antiquity took note of the symptomatic thirst and need to urinate — the term diabetes, coined by Apollonius is 240 BCE, means “to pass through” — with the waste noted as being extraordinarily sweet to the taste. Barely-yellow pools of the stuff would attract ants one by one, and doctors would employ “water tasters” to take diagnostic sips. The affliction mystified physicians throughout the ages, consequential as it is to an autoimmune assault on the hitherto invisible endocrine system, diabetes lingered in obscurity, referred to colloquially as “the pissing evil.” It was an unknown unknown.

Only in 1889 did Joseph von Mering and Oskar Minkowski discover the role the pancreas plays in regulating blood glucose levels, a revelation that led Frederick Banting and Charles Best to homogenize a pancreatic extract in 1922. After ascertaining the safety of this substance, they provided their first patient with insulin therapy — a 14-year-old boy named Leonard Thompson. “Isletin Insulin” entered commercial production in 1923, though it was not until 1953 that the hormone was synthesized. The pathology of diabetes, and its links to long-term health issues were uncovered in the 1940s; home urine test strips were introduced in the 1950s and home blood glucose tests became available from the early 1980s. By the close of the 20th century, the interrogation of somatic data had diminished the opacity of this once confounding condition; the deep dark red mysteries of the diabetic body drawn out into the sunlight via our perforated fingertips.

The contemporary diabetic bleeds data. As beneficiaries of the technological developments of the last century, diabetics today may find themselves far better equipped to manage their condition than their forebears, and advances in diabetes management continue to hit the market. Constant Glucose Monitoring (CGM), for instance, is a nascent wearable technology that gives the user continual knowledge of their BG levels. A CGM set comprises a transmitting sensor to be placed on the body, and a handheld receiver with a dashboard display. A hair-fine needle protruding from the sensor burrows under the skin, sipping at the interstitial fluid beneath. The dashboard receives and displays blood glucose levels in near real-time, at all times, issuing alerts when the user is high or low — its legibility particularly well suited to diabetic children and their parents. Yet nifty as these are — with the newest CGMs compatible with smartphones and watches — they are also currently prohibitively expensive for many, costing upwards of $1,300 as an initial outlay, plus $60 every two weeks or as soon as the sensor needs replacing.

As incentivized contributors to a potentially vast data set, the willing disclosure of metrics at scale may contribute to research aimed at further understanding or even curing the condition. However, not all diabetics are born equal; the digital divide between smartphone users and everyone else speaks to the degrees of sectoring present in the diabetic population, with even the most bog-standard analog equipment and test strips proving costly for those without healthcare. Diabetes affects the poor or unsupported the hardest, with countless across the world going undiagnosed. Others are price-gouged and surviving on limited medication, or suffer the consequences of going without treatment entirely, their future-damaged bodies paying the price.

The role of the functional individual come data-creator is further complicated as practices of “self-tracking,” which diabetics have so long experienced, become more broadly understood and adopted. For many, tracking and quantification manifest as by-products of digital engagement. From the data captured in our browser histories to social media posts that prove popular, we find our movements logged and assessed. As such, self-tracking emerges as a constitutive state of mediatization. However, as posited by Deborah Lupton and Melanie Swan, it is the choice to consult and analyze the datasets produced — or moreover, the decision to actively produce additional datasets by using wearables and apps — that distinguishes the notional Quantified Self (QS) in separate parameters. QS defines itself as a movement, the key tenet being that one can attain “self-knowledge through numbers.” The first QS meeting that took place in 2008, in the Pacifica home of Wired’s co-editor Kevin Kelly. Kelly, along with counterpart Gary Wolf, founded the QS movement, and with Wired as a vehicle for coverage, saw it expand to form a global community comprising hundreds of “chapters” instated in 34 countries at time of this writing. QS participants socialize their practice during these meetings and via digital platforms, sharing their experiences of and approaches to quantifying the self — along with success stories and failures. The explosive popularity of the movement attests to the benefits and satisfactions that can be gleaned from monitoring one’s health — self-tracking is after all, a historic practice — yet the act of reviewing one’s detailed, digitally afforded biometric data in the context of QS marks a radical departure in the consideration of what constitutes selfhood — and which qualities of selfhood are privileged. Subsequent to its founding then, QS and its politics have been variously adopted, discussed, debated, proselytized: Does QS promote betterment or stoke data fatigue? Can bioinformatics afford empowerment or are the biopolitical concerns insurmountable? I feel that I should be enlivened, encouraged, by the popularity of QS, and the galvanizing discourse surrounding it. Surely, these conversants are speaking my language?

A few years after my diagnosis I had a check-up with the hospital consultant, a lovely endocrinologist I see annually, who talks me through my latest results: an eight-week blood glucose average (they’re called HBA1Cs and we aim for below seven percent), kidney and liver function; heart rate; blood pressure; eyesight; and he checks the circulation in my fingers and toes. After enquiring about my emotional state he, in near-fatherly tones, reminds me with urgency that if I am thinking of getting pregnant I must plan it very carefully, for periods of elevated blood glucose levels prior to and during in the first trimester will harm the fetus. Does that all make sense, he asks? Yes. But I have another question for him: “Doctor, can diabetes…” I search for the words, my carefully rehearsed, elegant phrasing flying out of the window. I quickly blurt “Can diabetes make you stupid?” I am Lisa Simpson, except I’m 29, and I’m concerned about an imminent “dumbening.” More specifically, I am concerned about periods of hyperglycemia. I visualize the surfeit sugar crystals as cartoonish granular blocks, coursing through my bloodstream, tearing up my venal walls and when in the brain, carousing around the grey matter, unravelling neural connections, scratching out memories, and stymying my higher cognitive functions. Is this why I forgot my keys the other day? The question again: Is my brain being torn to ribbons, doctor?

If the body is conceptualized as a biomechanical whole, the diabetic is a system with a malfunction: leaky cyborgs, who think in biometrics while dabbling in effluvium

It wasn’t and isn’t. “Your concentration is being diverted,” he said, “consider it diluted, not reduced.” Diabetics, like parents, have one part of their attention near constantly dedicated to monitoring their respective concern. It seems an obvious answer in retrospect. My feelings towards the act of obtaining results had already begun to mutate, from the excitement stoked as the first few sets offered up such astonishing insights, to disillusionment, as I realized that this, in all its ceaseless repetition, was my life now. I found out later that the emotional exhaustion caused by ongoing management can give rise to “diabetic burnout.” In this complex, risky state, the diabetic may neglect their insulin regimen in a bid to experience brief freedoms. Knowing I benefit from all the technological advances available, yet finding the iterative, disruptive somatic messages, the ceaseless indexing of my very state of being, engender feelings of profound ambivalence. The 3.2 mmol/ls, the 11s. And whilst acknowledging that those advocating for self-quantification are variously earnest, or curious, and well-intentioned, I also see them as modern-day civic boosters; borne of a techno-utopianism particular to California, where, according to Richard Barbrook and Andy Cameron in “The Californian Ideology,” “the social liberalism of New Left and the economic liberalism of New Right have converged into an ambiguous dream of a hi-tech Jeffersonian democracy.” Normalizing the politics of the Quantified Self will serve to boost and normalize a civic state wherein successes are determined in metrics, and health is positioned as central to the notion of identity. As an individual whose health is necessarily central to my identity, this notion recapitulates my body as a site of resistance.

A friend of mine is surprised by my take on this, but they do not bear witness to my private, daily, ritual interfaces with a data-producing machine, body and blood pressed against device; this ongoing confrontation with a dataset has profoundly altered my experience of selfhood. I feel incredulity at this quantified life being thought of as a desired state. I find the enthusiasm for self-quantification evidenced in the global chapters and participatory groups entirely at odds with sense of interminability provoked by the insistent nature of diabetic glycemic control. I also feel envy. Voluntary self-trackers benefit from choice, whilst I fantasize about throwing my devices out of the window — imagining myself as my closed-circuit former self, as an autonomous being again, no bloody fingertips or jabbed flesh — before immediately feeling guilty. “I’m sorry!” I say to them “I didn’t mean it!” I long not to see my body as a problem to be solved. It is a state of compromise; the immediate and long-term condition of my body and my emotional state, dependent on how I react to a numeric display. Diabetics are in a uniquely intimate collusion with devices. We joke on forums: We are cyborgs! It’s true enough. The human-as-machine metaphor dies hard, and if the body is conceptualized as a biomechanical whole, the diabetic is a system with a malfunction: leaky cyborgs, who think in biometrics while dabbling in effluvium.

So, I think of earnest QS-ers as akin to D-503, the protagonist in Yevgeny Zamyatin’s novel We. D-503 was a true believer in the “perfectly mathematical” rule of the governing One State, whose civic structures are made entirely of glass. Zamyatin intended D-503’s mind-set to unsettle, so why does the normalization of the QS mentality not surprise? Rather than comprising a radical shift, the messages that sell quantification as a means of betterment chime soundly in an age of social-media-valorized metrics. We are encouraged to share, perform, and participate, with digital devices increasingly constituting rather than merely mediating experiences. The growing popularity of QS — in the instrumentalization of somatic data production — recalibrates the power dynamic between hardware or software producers and participating data creators — or consumers. That the movement also dovetails neatly with the established diagnostic approach of Western medicine recasts pragmatic considerations around storage and safeguarding as a question of ethics, notions of citizenship, the role of the state and the power amassed by corporations. Implicit too in the techno-utopian rhetoric surrounding QS is a turn to scientism, of machine-as-underwriter. For science writer Gideon Lichfield, the move toward merging flesh with intelligent machines represents a desire to “escape from the mundane and bothersome nature of membership (even their own privileged membership) in a flesh-and-blood society that is held back from advancement by its tiresome need to support — economically and socially — large numbers of less fortunate, intelligent, and motivated people.”

This resonates. Diabetic patients who can’t or won’t manage their condition are categorised as “non-compliants” by some medics, a term indicative of the patient straying from their treatment plan at cost to their bodies, themselves, and the state. I find the deviancy implied in this terminology striking; the rogue diabetic, initially gratefully surveilled, is ratted out by their wayward data, betrayed by their biometrics. The diabetic cyborg body routinely, necessarily, reconfigures, acquiring prosthetics or appendages, and in doing so submits to biometric surveillance. Voluntary self-trackers opt in to such machinations. In a techno-utopia one might see a cyborg-citizen as an assemblage of embodiments, optic, haptic, physical and bionic, linguistic and metric, the body enmeshed in the infrastructure. I find myself thinking of the fascist Republic of Gilead, envisioned in Margaret Atwood’s The Handmaid’s Tale, where the bodies and bodily functions of citizens are integrated with and co-opted by the ideology of the state, and “un-people” — the functionless or the resistant — are sent to labor then die in radioactive colonies. In a quantified future, will the socio-economically sidelined, the geographically remote, the disabled, the unfamiliar, the unwilling, be labeled as non-compliants, or as un-people, too?

Experiencing daily the gamut of compulsory quantification — the benefits, the tolls — I think perhaps that diabetics are canaries in the mine. But I am a doom-monger on occasion, I don’t deny it. An indicative daydream: What would I do in an apocalypse? I’m in a 28 Days Later–type scenario, the miracle survivor. As I mourn the loss of family and friends and the destruction of all humanity, I will loot pharmacies for insulin, bashing away zombies in the hunt for needles, and in the inevitable supermarket sweep my trolley will be filled with low carb options and as many dextrose tablets as I can get my hands on. Oh, and I mustn’t forget batteries to keep my glucose monitor running. This storyline is getting boring, I’m aware. And that’s the ongoing battle, for the time being at least. Before I fight off any brain-eaters or resist the co-option of my cyborg-self by the state, I must reconcile with the tedium of it all, committed to monitoring that I would describe as dull, if it wasn’t so vital to keeping alive and well. So whilst being deeply grateful for the relative ease by which I can attend to my condition, and as much as I draw upon and feel thankful for the streams of bodily data I can access — for it undoubtedly improves my life and the lives of others — it is in the quiet periods where my levels are stable and I don’t need to pierce my skin to feel in numbers in which I luxuriate; times when I can almost recall what it feels like to be a hermetically sealed, autonomous entity, only dimly cognizant of the biochemical reactions taking place within. Such moments are fleeting. Knowledge of my health status is drilled deep; so profoundly has my relatively late diagnosis informed my sense of selfhood, I not only have diabetes in my waking fantasies but I carry my devices and conduct tests in my dreams. It demands attention. And though my body may talk in effectual numbers, I cannot respond exclusively in kind. I insist on an expressive approach when reconciling with my condition; the sprawling stories encoded within metrics are not adequately conveyed in digits, which may serve capably as signs, but comprise mutable significations. Others may think differently of course — this is just the way I’m wired.

Hannah Barton is a doctoral researcher based in London. Her academic interests include internet memes, new literacies, and cultural history. She tweets occasionally @hhannahhbarton.