Click here to view the embedded video.

Today, though, I have a new problem. Despite just eating a salad, my blood sugar soared on Sunday afternoon. Fearing a site issue, I changed my infusion set. Then yesterday I noticed that I had a large, tender lump underneath my skin where the site had been. It wasn’t visibly red, and it wasn’t hot. But I could feel it, and it hurt.

Subcutaneous skin infections are one of the less sexy aspects of being a diabetic (as opposed to, say, wearing a pump to begin with, or covering your body in pieces of linty adhesive). I guess I knew this already, but it really hit home yesterday when I was having lunch with a friend of mine who’s in med school, and I made him feel my lump while we were waiting in line to order.

“Touch it,” I said, pulling up my shirt. “Isn’t that weird?”

“Uh, yes,” he said.”Is there any pus?”

“What can I get you?” asked the woman behind the counter.

I decided to give my lump a day and see what happens — with the understanding, of course, that it if did get red or hot (or, heaven forbid, start to streak) I would go to a doctor. I figured that when I woke up this morning, I would have one of two things: a smaller lump, or an obvious infection.

Unfortunately, I have neither. My lump is still where it was yesterday, roughly the same size. It might be a little less painful, but I don’t know whether to attribute that to actual healing, or to the fact that I wasn’t poking at it while asleep. In any case, I did some research and have determined that it is either a late-developing hematoma, or an infection, maybe staph. You know what the only thing less sexy than a blood lump is? Staphylococcus. And you know what’s annoying about hematomas? If you don’t get the blood out, they can lead to an infection.

Here’s more information from Diabetes Forecast on gross things that can happen when your insertion site goes bad.

I’m going to go dip my hands in rubbing alcohol and then stare at my stomach in the mirror for a while. Stay tuned.

As someone whose pump once suffered a “button error” and began spraying insulin into the air like a fountain (or, less poetically, a peeing dog) I’m glad to hear that pump problems are something people are paying attention to. But I’m also curious as to what kind of issues they’re talking about. According to the Journal,

Manufacturers are required to report problems potentially associated with devices to the FDA. The FDA conducted a review of insulin pump-related adverse-event reports and found nearly 17,000 reports from Oct. 1, 2006, through Sept. 30, 2009. The reports don’t necessarily mean a device caused a problem but serve as a signal for more investigation. Even if a device is functioning properly patients can inadvertently misuse the device. Of the reports, about 12,000 reported a patient injury (such as problems with blood glucose levels) and 310 deaths.

The agency said the information provided by manufacturers involving deaths “was typically incomplete.” The agency said in 225 of the deaths reported the device problem was listed as “unknown,” although in many cases the device was never returned to the manufacturer for additional follow-up.

However, in 41 death reports, a device problem wasn’t identified but the circumstances involving the death involved diabetic coma and problems associated with blood-sugar levels being too high or too low, suggesting the device may not have been working properly.

So, uh, what are we supposed to conclude? Is the problem the devices, or the people using them?

I think it’s very important to keep track of these reports — since this is a situation where a product failure could kill someone, I want the companies who make insulin pumps to feel like there’s a fire under their ass. But at the same time, one of the reasons we don’t yet have a closed loop system (i.e. artificial pancreas) is because companies and the FDA are worried that the devices (or people using them) could make mistakes. Which, granted, they probably would — the question is whether those mistakes would be more severe and dangerous than the mistakes people with diabetes make every single day when we try to gauge interactions between insulin, exercise and meals.

I guess this is what I’m saying: it’s hard to draw conclusions from this article about how often the insulin pumps themselves are the problem (and how concerned we users should be about possible recalls). Looking at it on a more global scale, though, I have two competing desires. First,  for companies to pay close attention to product flaws that might kill people. At the same time, I don’t want an obsession with technical perfection — in the case of an artificial pancreas —  to get in the way of progress.

Bonus: Reading materials for the FDA conference yesterday

If you’d like to read the full text of some of his tweets, check out Access Hollywood – my 160-character limit doesn’t allow me to fully express his creative use of abbreviations. But what interested me is his perspective on the disaster as a Type 1 diabetic. “Imma Type 1 diabetic, and was sppsd 2 leave sunday,” he wrote, according to Access Hollywood. “I only packed enuf insulin pump supplies 2 last til then….airports r closed!”

You might be quick to point out that Elliott Yamin is just one visible example of a much larger population of Type 1 diabetics in Chile (or, for that matter, Haiti), for whom a natural disaster like an earthquake could have even more devastating effects — and who don’t have easy access to Access Hollywood. But that’s my point: the horror of both situations is difficult to wrap one’s mind around. Having a particular person in mind helps make the situation more real, even if the person writing is an American best known for his hit single “Wait for You.” It also highlights the special challenges all of us face when traveling with diabetes — we can usually navigate our normal lives without calling too much attention to our disease. But it just takes one event — a malfunctioning pump or, in this case, a natural disaster — to remind us of the additional challenges diabetes presents.

A practical resource: one good way to help other diabetics on the ground is to check out the International Diabetes Foundation, which we mentioned in the tip section after the disaster in Haiti.

In the meantime, Yamin is continuing to send updates of his situation that are more elaborate than his intial tweets. “This country isn’t very keen on insulin pumps,” he recently commented. “Supplies for my pump are running low. Hospitals here are very crowded, and as you can imagine, they are dealing with bigger things.”

The source of these quotes?  Fox News’s “Pop Tarts.” And to think I made fun of Twitter.

(In all seriousness, best of luck to Yamin and to all the diabetics —  Type 1 and Type 2 — currently stranded without supplies. I hope that help comes soon.)

As expected, the biggest difference between this pump and my old 515 is the color. The user interface, shape, buttons, and operations are all almost identical. This is strange when considered from the perspective of the rapid release, continually updating technology world that so many consumer goods operate in; compare, for example, the iPhone, which allows constant outside development and additionally makes small interface adjustments through regular software updates. There are significant benefits to this approach, insofar as development of new, innovative technology is easy and fast. Just imagine what a few clever diabetics could make possible if we had a framework to build and distribute iPump Apps!

On the other hand, the inertia of the Minimed interface is completely understandable given the regulations and responsibilities familiar to medical device manufacturers. If a user can’t immediately find his doodle-drawing application after it’s renamed in the iPhone App Store, no big deal– he’ll figure it out. But if a pump wearer doesn’t recognize the “No Delivery” alarm because its melody has changed, or boluses an extra hundred units because the Bolus Wizard configuration is computed differently, people get hurt and Minimed gets sued.

In other words, in the case of medical devices or pharmaceuticals, I can tolerate what in other industries would seem like too much regulation and resistance to change. I was reminded of this quite unexpectedly when I woke up very sticky and unhappy with a blood glucose of 38 at midnight on my first night of wearing the new pump. Sitting on the floor, after enough carbohydrates and time to have recovered to a more sentient 65, my first thought was, “Why did I get so low? Could I have configured the basal rate incorrectly?”

As it turns out, I had not, and the low was likely a result of my overbolusing for dinner hours before, and subsequently choosing to assume that I would be okay with a pre-bed blood sugar of 78 (“Hmm.. lower than I’d like, but I already brushed my teeth… it’ll be fine!”). Nonetheless, the episode made me appreciate the fact that, given FDA regulations and acceptable error rates for medical devices, there was an extremely low chance that the pump was configured correctly, but actually pumping the incorrect amount of insulin into my body. Can you imagine how damaging it would be to have a pump that claimed it was injecting 0.3 units of insulin, and instead injected 3.0 units? Or, worse yet, a pump that sometimes– but not always– was slightly off in its measurements– just enough that you couldn’t be sure something was wrong, and yet your blood glucose would vary unpredictably. Please excuse the colloquialism, but that would suck.

Luckily, my pump suffers from no such shortcomings, and, based on the last few days of observation, seems to be performing capitally– which is to say, just like the old one.

Oh, and there is one other notable change between the 522 and the 515: there is an extra menu option now for “Sensor,” which I would use if I had a Minimed continuous glucose monitoring sensor. I don’t have much use for that option, since I don’t have a sensor.

But, here’s the other exciting news from this week: that sentence, rewritten with full disclosure, should read: I don’t have much use for that option, since I don’t have a sensor, yet!

But more on that later.

But bringing diabetes to paradise is challenging. Most of my vacations tend to be in cities — or, if not urban areas, places where it’s warm enough that I’m not tempted to jump into every body of water that I come across. As such, it’s no problem wearing an insulin pump or a continuous glucometer — I tuck them under my clothes, keep my shirt on, and enjoy my travels.  Hawaii’s different — not only is there the fashion challenge of matching bathing suits with insertion sites (those I don’t care about too much) and coming up with clever ways to tuck a pump into a sundress, but there’s the basic issue of the water: oceans and diabetes gear are not a good match.

I have adhesive problems with my CGM when I’m at home lying in bed, so I realized there was really no point in trying to get my sensor to stick to my skin for an hour’s snorkeling, let alone a week by the water. (Plus the fact that I doubt the electronics would react well to salt water.) So that’s out the window — it’s back to finger sticks. And then there’s the question of the pump: I’m careful to disconnect it and close up the catheter with the little plastic cap that comes with every QuickSet — but how effective are those really when it comes to keeping water and bacteria off of my puncture wound? (Not so much, if my last site was any indication — hello, red, swollen skin.)  And, of course, there’s the insulin problem: take the pump off while you swim, and you’re risking a high blood sugar when you come back to shore. Some people I know deal with this situation by going “untethered” while on vacation — temporarily switching back to just shots. But it’s been a long time since I’ve been on Lantus, and switching back — especially when I’m getting so much exercise — scares me. So my pump is still on.

All this is worth it, of course — I’ve only been here three days and so far have had schools of fish follow me while I swam, and watched a pod of breaching humpback whales (whale-watching = very diabetically friendly). I’m also finding that spending much of the day outside moving around can do a good job of  counteracting one of the other main dangers in paradise: the fruity cocktail. (I mean, seriously, people — are you trying to kill me?) But even when I manage to say no to strawberry daquiris, I’m also having an unexpected reaction to spending so much time outside: a day in the sun (which I had today, despite my best sunblock efforts) makes my skin feel  hot in exactly the same way as a high blood sugar. So I’m sitting here on the couch, several hours after eating, completely convinced that my blood sugar is sky high. In reality, I’m just dehydrated. Maybe I should reconsider that daquiri after all.

Got any tips to share on how to vacation with diabetes (besides leaving at home)? Do tell.

Avatars have been around for years, but I just made one for the first time, in Wii. I selected an oval face, medium brown eyes, straight dark hair, and a tall and lean female body. I put glasses, just like mine, on her face. I named her “Jane.”

Although many gamers make an avatar that’s a fantasy version of their selves, I wanted one that represents my identity, or who I know myself to be. I couldn’t find among all the design options, however, the one accessory that is as constant to me as the shape of my nose: an insulin pump.

There are no assistance devices in Wii. No wheelchairs. No prosthetic limbs. No crutches. Every avatar walks upright on two legs. A game like Wii Fit would be impossible to play, in its current version, by hobbled players.

In the new James Cameron movie, Avatar, Jake Sully, an ex-Marine in a wheelchair, has an avatar, too. His was made by a scientist. Unlike my Mii, his alternate has a physical presence in another physical world, and Jake, while in a self-induced sleep that relocates his consciousness to his avatar, experiences life through that body.

Jake’s alternate body does what his earthly one can’t do. In the scene where Jake tries out his new and blue avatar, he runs past the lab assistants who try to restrain him and out into Pandora’s farmlands. His bare blue feet pound the earth, and, from under them, grains of soil shoot gleefully. When the alternate Jake finally stands still, his toes keep moving and squiggling into dirt.

Those feet do all the talking; we the audience know that through his avatar Jake is feeling the animal joy of the body in motion. This the human Jake never seems to feel. While social critics like Annalee Newitz see Avatar as an expression of “old white guilt” and racism, I see the film more as a (perhaps unintentional) expression of ableism, or a preference for those who appear able-bodied. The human and dour Jake mourns his body and what it prevents him from doing. As avatar, he is reborn: no injuries, no lack of physical power. When he gets the chance, he chooses life as an avatar and lets his human self die away. That scene is played tenderly, yet the transition from mere man to blue giant is framed by the plot as a triumph.

The film’s values about able-body supremacy are not startling, and this may be why no prominent critic or blogger is commenting on them: Avatar reflects our culture’s fantasies of being other, and fitter, than we are.

We so desire the experience of being fitter, cuter, and younger, that we often treat our own bodies with disdain or even punishment. (When was the last time you heard someone say, “I love my body. There is nothing about it I would change”?) And when we get the chance online, we create that fantasy self and choose large breasts over small, a full head of hair over none, a commanding stance over a meek one. We clothe our avatars scantily to show off ripped musculature and gorgeous tattoos. We make our white selves black or black selves white. We sling weapons over shoulders and ditch  bifocals. We lose the cane, knee brace, and hearing aid.

What if the avatar universe underwent an expansion and made room for different physical attributes and abilities? What if I, in the online game world, could create a digital self that was less fantasy and more reality? I might clip an insulin pump to my avatar’s tights and locate a white circle of adhesive tape on her abdomen. A friend with a cane might give one to her avatar. Others could equip theirs with prosthetics, wheelchairs, or surgical scars.

I don’t see this new online world as being a sick and crippled place; I see it being different. In my childhood neighborhood, there was a girl named Karen who had been born without a foot and wore a nude-colored fiberglass one, like a boot, that came up to her knee. (This was in 1973 or so.) When we played kickball in the street and it was her turn, Karen took off her artificial foot to protect it and then whomped the red heavy ball with her stump. To run the bases as the outfielders chased her homerun ball, she’d yank on her fake foot and then take off. Those of us waiting a turn to kick would watch and secretly envy Karen’s power. We looked down at our own identically-sneakered feet and imagined others in their place.

The human body altered by injury, illness, and absence may be as intriguing to people who are well as it is to people who live daily with the effects of injury, illness, and absence.  In this new virtual world I have proposed, after a few disabled pioneers make avatars in their own earthly image, an intrepid able person might start experimenting online with, for example, immobile legs, a wheelchair, and life with both.
This, I realize, brings my frustration with the online avatar world full circle. If “normal” and able people alter their virtual bodies to represent injury and illness, would there be any symmetry between the physical and virtual human worlds?

Unlikely. Variation and not symmetry would be the chief feature of this expanded virtual world. People like to play, and they like to mix things up. A single avatar might combine the attributes of different genders, body types, and dis/abilities, as the line between the physical real and digital fantasy blurs. Far from being monsters, these mixed bags of body parts and devices might give unforeseen powers to their avatars, in the same way that being in a wheelchair leads some athletes to develop immense upper body strength or that having diabetes makes me a vigilant monitor of minute signals and data. Limitations increase desire, which is a powerful motivator of behaviors and change.

Limitations, too, whether deliberately or involuntarily taken on, open people’s awareness to mortal frailty and the majesty there is in living with it. At the end of the novel Jane Eyre by Charlotte Bronte, the imposing and romantic Rochester is made “blind and a cripple” in a massive fire that destroyed his manor, Thornfield. When Jane returns to him after a year-long estrangement and sees the scar on his forehead and “mere stump” where his hand once was, she says to Rochester that, contrary to his concern that his wounds are repellent, she “is in danger of loving you too well for all this.” He confesses that his injuries have forced him to give up vain pride in his strength. Although he welcomes her “ministry,” their two bodies become shelter for each other: she sits on his knee as they talk in the woods, and later he uses her shoulder as “prop and guide” as they head home.
I would not wish blindness or loss of limb or chronic illness on anyone as a real-life lesson in vulnerability. There are other ways to put one’s self in another person’s shoes or wheelchair, and these include film, literature, personal accounts, and honest conversation. The virtual world — if enlarged by all the attributes that comprise variation in the human form — might also offer us a partial entrance.

One day soon, perhaps as soon as a few years, many diabetics may forever throw away the lancets they use to prick their fingers for blood sugar tests and the needles they use to inject themselves with insulin.

Instead, they may be wearing bracelets or even earrings smart enough to sense and report glucose levels continuously to an artificial pancreas: a surgically embedded pump that dispenses just the right amount of insulin into their bloodstreams.

Whoof, that’s funny, isn’t it? I think living with diabetes requires a certain level of gallows humor to begin with, but there’s something especially cruel about how every couple years (or, hell, months) a news report comes along promising that “within a few years,” the hassles and burden of living with diabetes is going to be removed. (And with cute earrings, to boot.)  The problem is that “within a few years” is the equivalent of “tomorrow” — forever pushed into the future. Also depressing: as recently as 1999, there were only an estimated one million people in the United States with Type 1 diabetes. Today, there are closer to three million.

But part of the article is actually very inspiring —  because while we might not be wearing glucose-sensing jewelry yet, some of the hypothetical technologies it describes actually have come to exist. Take, for example, the end of this paragraph (it starts with the mandatory explanation of what can happen if things go wrong):

Diabetics who can maintain normal or close-to-normal levels of blood sugar, or glucose, reduce the risk of grave complications like amputation, blindness, nerve damage, heart disease and kidney failure. A continuous glucose sensor, even one that is not yet connected to an automatic insulin dispenser, might help to reduce these risks. It might also be a valuable alarm clock when blood sugar drops. When that happens, people sometimes lose consciousness.

And guess what? It’s 2010 and, while still not widely in use, we have continuous glucometers — three different kinds to choose from. Hell, mine woke me up just last night to warn me of an impending low. That’s pretty amazing. And then check out this:

Dr. Siegel pointed out that the technology [i.e. getting a fully closed loop artificial pancreas] still had many challenges to overcome. ”We have one arm of it, the insulin pump,” he said. ”When a reliable, miniaturized sensor is in place to monitor glucose constantly, the artificial pancreas will be far closer to reality.”

That was the point that Aaron Kowalski made to me about last week’s announcement to create the first commercial partially closed loop system: today, unlike in 1999, all the components are actually on the table. Like all good diabetics, Kowalski — who’s  had type 1 for some 25 years — knows better than to put a hard timeline on things. But he’s still optimistic — and as a consequence, so am I. The artificial pancreas is going to happen. And I hope that if I write this same blog post in 2020, what seems hypothetical today will have become reality.

A $6,000 insulin pump with an on-board computer chip is not alluring. Neither is the white mesh adhesive patch on my naked abdomen or the length of nylon tubing that connects the patch to the pump. There is only illness, and there is no way to make that sexy. After several years as a medical device wearer, I know.

Negligees and nudity are impractical, because neither provides much to clip the device to. Clothes and pajamas, on the other hand, have waistbands or pockets, which keep the pump steady during the prelude of kissing and touching. The pump can even be negotiated during the impatient slithering of fingers into nightclothes. If my husband and I lie on our sides, front-to-front, I can clip my pump against my hip. If I’m on my back and Jimmy wants to lay his full length on top of me, I adjust the pump along my waistband toward my back, so the hard case doesn’t press into his abdomen.

At some point, somehow, the clothes need to come off. We are cautious around the pump and its accoutrements. I am the more adept at this task. Most of the time Jimmy’s hands know to work around the white adhesive patch and hard plastic connector button that marks the tender insertion site, but sometimes they stutter and miss and fingers drag at it, reminding me.

Although we are both aroused, I cannot be completely caught up in the moment, because I’m calculating what to do with the pump and when. I can remove the device for up to 60 minutes without bringing harm to myself, but then I have to remember to stay awake or get Jimmy to function as a human alarm clock and remind me, if I doze off, to reconnect. If I’m tired and know that I’ll want to finish soon and then fall into a long stretch of sleep, I might leave the pump connected during sex, the device tucked under a pillow near my head, leashed to me by the tubing. Perhaps we are leashed to it: If we try to roll away from the pump, its weight seems to tug me, and therefore us, back into place. My body knows how to move, though, and so does Jimmy’s, and we arrive eventually at relief and pleasure.

I want these moments to last longer than just minutes. I want to lose myself in them. But that kind of loss, which promises liberation, seems out of reach for me. Instead, I tug my bottoms back on, reattach or adjust the pump, and turn onto my side, listening to my husband’s breathing relax into sleep.

Five years ago, I went from being a person with Type 1 diabetes who injected insulin the old-fashioned way—with syringes, by hand, four times a day—to one who wore a computerized pump that, under my control, delivered insulin to me around the clock. Although the pump offered me better health and the hope of fewer long-term complications from diabetes, wearing it made me feel fragile and also inexplicably obsessed with doubts about myself as a woman.

Mike, the sales rep, sold me on the pump. On an overcast June day, we had rendezvoused at a crowded, four-table cafe that was midway between his location and mine. I ordered coffee and he a scone. Before they arrived, he checked his blood sugar level with the glucose meter that everyone with diabetes carries, and then he unclipped his pump from his belt and showed me how he calculated and programmed the dose of insulin that would cover the estimated carbohydrate grams in his scone. With him I felt at ease. People who have the same affliction, and reveal it to each other, experience an instant closeness. He told me about his life: childhood, his history with diabetes, his wife, their new baby daughter. I told him about mine.

As if we were on a date, I imagined him in bed. Not with me, though. I imagined him naked, with some faceless naked woman whom I placed in the “wife” position. I saw him on top of her, him moving vigorously, the blankets falling away. I tried to insert the medical device, the one he had just demonstrated to me, into my mental movie of him and this woman I didn’t know. Was it attached to him, bouncing on the mattress next to their bodies? Did he keep his shirt on and the device clipped to the breast pocket? Just like we were on a date, I avoided asking him the very question I wanted to ask, the one that kept bubbling up as we were talking about insurance reimbursement forms: “What do you do with the pump during sex?”

Later, during an appointment with a nurse educator at the Joslin Diabetes Center, it occurred to me that this was exactly the kind of issue I was supposed to bring up with a health professional. Sex: that’s the body, right? She and I did talk at length about another difficult subject: death. In the lead-up to getting a pump, patients must consider the enormous implications of being constantly attached to a machine that could fail and require immediate human intervention. You can’t ignore a malfunctioning pump the same way you can a broken wristwatch. Insulin doesn’t only control blood sugar levels; insulin is a hormone essential to life. It was easier, however, to talk with her about a threat to my life than it was to talk about a damper on desire. Sex and death make good bedfellows only in art.

During the weeks before I switched to the pump, I thought more about sex on an hourly basis than I had since I was a young adult. Although I wanted a direct answer for what would sex be like, I wasn’t bold enough to directly ask a nurse, doctor, or even another person with diabetes my questions. The few books on insulin pumps that I found, and even the official literature from manufacturers of the device, shied away from or minimized the topic. There were no nearby friends, no other women with insulin-dependent diabetes, to interrogate. Who was there to ask? I turned, of course, to Google.

I typed “sex and insulin pump” into the search box and mostly found pages from manufacturers of various pumps that all relied on opaque language about “intimate evenings.” I read a few blogs by pump users that unhelpfully pushed a vague “sense of humor” strategy. How exactly would this humor manifest itself? As jokes? Innuendo? I conjured a vision of two winking lovers and pictured one saying to the other, “Hey, baby, why don’t you come over here and show me your device?” I winced.

Changing my query, I asked Google for “sex and medical device.” There was plenty, mostly written by nurses and physicians, on sex for people with pacemakers (“ask your doctor first,” and “take it easy”) and devices for people with sexual dysfunction, like the penis vacuum pump that is used by men with diabetes who experience poor blood flow to a penis damaged by years of high blood sugar. There were even a few articles on the use of medical devices as sex toys, but these, I noticed, were not written by clinicians.

I broadened the search and found a surplus of information on “sex and disability.” While I didn’t find the answer to my particular worries, I did hit upon two illuminating topics: scholarship on disability and sexuality, and disability erotica and pornography.

In the first topic, there was practical advice for people in wheelchairs, people with partial or total paralysis, people in the early stages of multiple sclerosis, people with sexual disability. There were psychological self-esteem messages for every sexual anxiety; “communication between partners and with the health care team” was encouraged repeatedly. There were also advocacy groups that sought to normalize the sexual lives of chronically ill and disabled people. There were inspirational messages to “forget loss and pursue possibility.” All of this matter-of-fact, explicit, and psychosexual information—“frank talk”— was what I thought I was looking for. To find it, though, actually made me sadder, reminding me that I was stuck in the loss that I was being exhorted to gloss over.

What buoyed my mood, strangely, was an archive of erotic fiction written by a wheelchair-bound man, paralyzed from the waist down. Wheelchairs and paralysis seemed to have nothing to do with my particular situation, diabetes, but as a reader I was drawn into the iteration of the writer’s sexual fantasies, which he used as material for his self-published stories.

In each of them, the scenario always began with the date preparations: shaving, dressing, lighting candles, assembling dinner ingredients, and selecting music. The protagonist scoots around the apartment in his wheelchair as he creates a romantic setting. The woman arrives, beautifully dressed in gauzy layers, and the date begins. Romance ensues. Sexual excitement takes over, and the narrator’s physical potency seems to accumulate as he and his date kiss, touch, and make love.

Meanwhile, the wheelchair disappears gradually from the text; desire lifts the man out of his chair, so to speak, into a kind of sexual heroism. He is muscular, powerful. She responds. The scene fades on sated lovers embracing with healthy arms and murmuring to each other. The wheelchair never returns to the scene. In ecstasy, this paraplegic man doesn’t just transcend himself, he becomes himself—the self of possibility that he imagines.

These stories turned me on, and the transformation affected me every time, even though I got to know this writer’s work well enough to know what was coming. Although his work offered readers no advice for dealing with the ill or disabled body during sex, the stories did help me understand what it was about the insulin pump that was making me obsess about sexual losses. Don’t many of us—healthy or ailing, able or disabled, unassisted or assisted, young or mature—locate our ideal selves in the sexual? When we kiss, we close our eyes. Desire and sensation airbrush the outward signs of our lesser selves: stretch marks, missing toes, breast scars, purple veins, bruises, or sagging flesh. This kind of nakedness, however, the one our imagination creates, is a disguise. Nakedness becomes an idealized performance of our selves, and sex the context in which we express and communicate it. None of us wants to be that other kind of naked, the entirely bodily kind that exposes the undefended self: the one in the wheelchair, the one with two hearing aids, the one wearing prosthetics, the one mourning her pre-pregnancy fitness, the one who wrenched his middle-aged knee. That self requires sympathy, acceptance, and often help.

Late one night, I heard the pump’s alarm while Jimmy and I were having sex. The three-beep melody is a quieter, more lilting version of the electronic pulse that a garbage truck backing up makes. Jimmy heard it, too, and paused inside of me; I decided that I could ignore it for the moment. “It’s okay,” I said and we finished. Then I checked the alarm: Low battery. I sighed heavily then got dressed. To the darkened bedroom, to a groggy husband, I muttered, “I need a new battery.”

In the kitchen I peered into the crowded cabinet where I stash alcohol wipes, lancets, a glucose meter and test strips, insulin reservoirs, Ketostix, and backup syringes. It’s a little pharmacy in there. What was missing was the miscellaneous: aaa batteries.

Standing in the laboratory-bright light, I cursed. How could I have let my battery supply run out? I rummaged in the bottom of my satchel. Then I stomped down to the basement where we keep tools and light bulbs. Jimmy came downstairs and searched the backs of drawers; he found plenty of batteries, just none the right size. I pried open all the remote control devices in the house, fished out their batteries, and slid them hopefully into my pump. But each time I tried one of those half-used batteries, the alarm melody played and the same error message appeared. The pump would only drink fresh juice. After a few tries, the pump shut itself off according to its internal program. My real pancreas had stopped working more than a decade earlier; now the replacement one was giving up.

By then it was almost two a.m. Though weary, I felt the flutter of will inside of me. It might have been automatic, or it might have been a decision; nevertheless, it helped me focus on the immediate task—getting new batteries. Jimmy offered to look for a 24-hour store. He put on clothes and a jacket, grabbed the car keys, and went out.

I climbed back in bed to keep warm, stay calm, and consider a back-up plan. Minutes later Jimmy called me from his cell phone. “Star Market, closed,” he said. “Any ideas?” We decided he should head to a Boston neighborhood where plenty of university students live, then out to Walgreen’s in Newton. As I lay there, I thought about ditching the pump altogether and going back to my old program of four to five injections of insulin each day. It didn’t occur to me to not take my insulin, as it never had in my then twelve years of living with diabetes. I am a pragmatist when it comes to illness. As I considered reverting to injections, I realized that I had come far enough with the pump that I wanted to stick with its advantages. That meant sticking with its drawbacks, too. I would live with them.

Jimmy called again. “Everything is closed, can you believe it?”

“Try a gas station,” I suggested.

He did. “Well, the guy didn’t have batteries, but he told me where I could find an all-night convenience store.” An hour later Jimmy came home and tossed a package of batteries onto the bed. He made a wacky story of his late-night jaunt through the greater Boston suburbs on a haphazard quest. I could see him trying to dramatize the experience and find the funny in the tedious. I wasn’t laughing, but his lightness turned the crisis into something we could cope with.

Coping. As a person with a chronic illness, this might be the best I ever do. To rise above my daily cares, I would have to disregard not only this little dynamo attached to me but diabetes and its demands that I feed, medicate, and monitor myself. There is no transcending the reality of being my body: 43 years and getting older, female, insulin-dependent, bruised. When I catch a glimpse of my nakedness in the bedroom mirror, I see an imperfect woman and the signs of her vulnerability. That’s me: no costume, no glow. Shoulders and back are straight, and one slim arm hangs down while the other is bent at the elbow, the hand cupping a compact machine tethered to a white patch on flesh.

I will never become the sexual self that the youthful me once imagined: whole, extraordinary, and seductively bare. That is a loss. What if, however, to be naked meant what it really is? Exposed and unadorned, not improved by artifice or imagination. Such a self might seek recognition from a lover, as much as she does pleasure. Here I am. Look.

Originally published in Bellevue Literary Review

Jane Kokernak teaches in MIT’s Writing Across the Curriculum Program and lives with her family near Boston. Her essays have appeared in Bellevue Literary Review and Equally Shared Parenting, and one is forthcoming in PMS poemmemoirstory. Articles on teaching writing have appeared in Tomorrow’s Professor. She is at work on a biography of Elizabeth Coleman White (1871-1954), a farmer and amateur botanist who in the 1920s introduced the first cultivated blueberry to the United States.

“I tried it out probably a month after I was diagnosed, and we went into camp wearing it, the offseason workouts,” he said. ”It kept falling off and we had problems keeping it on, and I didn’t want to have to keep putting a new one on every day as it fell off. I just got away from it and stuck with the shots.”

‘This offseason I’m going to possibly look into that. If not, I really like the continuous glucose monitors. I felt that I got a lot more out of that than wearing the pump. Just knowing where my blood sugar was at all times and having the arrows going up or down or staying constant. I felt like that information was much more valuable to me than the pump.”

Cutler can be seen monitoring his blood-sugar levels on the sideline during games and says it’s easier as a football player than if he played a different sport such as, say, volleyball.

”I try to keep it around 150, so if I start going down to 100, 110, I’ll drink Gatorade and move back up,” he said. ”It’s just something that we’re always consistently checking up on. Different sports, it’s a little bit harder. Some games, I’m only in for three plays or 10 plays, then we come off and the defense is on.”