Tethered To The Body

Shares

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

Leave a Reply

34 Comments on "Tethered To The Body"

Notify of
avatar
3000
Sort by:   newest | oldest | most voted
trackback

[…] My essay, “Tethered to the Body,” on sexuality and the insulin pump, has been reprinted at ASweetLife. […]

Chris Harper
Guest
Chris Harper

Thanks Jane for a refreshingly frank discussion of living with a pump. However I must add that I’m wondering why you don’t get completely naked more often. I go back to the bottle and syringes on a regular basis. In fact I always carry them with me everywhere I go in case The Big One hits. I’m referring to the earthquake of course.

AmyT
Guest

Been there. Done that. Even with a tubeless pump there are certain “difficulties.”  Check out “Too Sexy for My Pod”: http://www.diabetesmine.com/2007/03/too_sexy_for_my.html
 

Catherine
Guest
What a wonderful, beautifully written essay about a subject we’re all familiar with but which is never really discussed. It reminds me of an interaction I had right after I started wearing the pump with the mother of a kid I was tutoring. Her sixth grade son was busily baking cupcakes when his mom, curious about my new device, pulled me aside. She asked me, point blank, “What do you do during sex?” I parroted back the line from the manual — i.e., you can disconnect it during “intimate moments” — and moved on with the conversation. But now that… Read more »
Karmel
Guest
Karmel
So familiar– I am just happy I am married, and not trying to explain my cyborg-port to dates. My husband can look past the pump, thankfully. The real trick is when, after we initiate, my husband says ‘I think you’re low.’ And I stop, measure my blood sugar, and sure enough, the game has to end while I correct my blood sugar, which isn’t a turn-on for either of us. As to battery life– has anyone ever seen how long past the ‘Low Battery’ warning you can go? In theory, you’d hope for at least a night’s sleep. I went… Read more »
Bernard Farrell
Guest

Thanks for a great essay on this challenging topic. FYI, low battery doesn’t always mean the pump will immediately die. I’ve used my Cozmo pump for up to about 3 hours after getting a low battery, though I know I was taking a risk it would croak.
I don’t know if this would help, my diabetes search engine only looks at sites related to diabetes, I vet each one before I add it. It may provide better answers.

trackback

[…] “Tethered to the Body” by Jane Kokernak is what I find to be a rather frank look at one person’s perspective of sex with an insulin pump.  Quite honestly, it is not my approach to sex with an insulin pump, and I was most affected by how engaged I was by a viewpoint so much different from my own.  If you didn’t click the first link in this paragraph, make sure you click this one here to go read the full article. […]

Becca
Guest
Becca

This was a great post.  I’ve only had my pump about six months.  I did some similar googling before I got it.   I have had a random hook-up once and it wasn’t really a big deal.  I diconnected it without him seeing and at some point he saw the site and asked about it, I told him, and we continued on.  I think of it as like a bandaid.  :)

Arthur
Guest
Arthur
I loved the honesty and vulnerability of this essay.   Practically, it does seem as if there are some things you could do to get around the self-consciousness that the pump creates for you during sex. Certainly an hour is enough time for a nice enjoyable romp (and if the fun goes on for more than an hour you can always take a break, reconnect, give yourself a small bolus equivalent to a basal amount — say .25 units, for instance — and then go back to romping. The pump can be left in a nearby bathroom, for instance; it doesn’t… Read more »
trackback

[…] Tethered To The Body […]

Kathy
Guest
Kathy
You clearly have issues with both your diagnosis as well as your sexuality and relationship with your husband. I have been a type 1 diabetic for 36 of my 42 years of life and have never looked at myself as having a disability. Never would I think to compare myself to someone in a wheelchair. To compare yourself to the man in the wheelchair just baffles me. He can never make his wheelchair or paralysis disappear however you my dear, can make your pump disappear for 1 hours, 2 hours as long as you wish. You will not die without… Read more »
Bernard Farrell
Guest

Um Kathy, I once forgot to reconnect my pump after sex. I woke up several hours later with a high of 600 and a raging headache. Being without the pump for more than an hour or two can cause serious problems including ketoacidosis, because we don’t have a background long-acting insulin.

Kathy
Guest
Kathy

Duh, you will have high blood sugar but obviously you are still around to write that post. Certainly not ideal but not the end of the world either, and you move on.

Erika
Guest
Erika

I used to use an Omnipod but we found that it was more bulky than an infusion site so i found myself asking him to be more careful with the pod than with the pump. The tubing was long enough so it could just lay next to me when I had a Cozmo. I never had a problem with  feeling tethered and sex was no big deal, now we hardly ever have sex.

Joe
Guest

Wow Kathy, how wonderful that you made an attempt to diminish Jane’s feelings and thoughts of her experience with an off the cuff assessment of her sexuality~!  I’d like to encourage you to think a little more next time.
Jane, thank you for not only writing this but publicly sharing it.  We have a 6 year old daughter who will no doubt have her own feelings on the matter some day.  I’m saving a copy of this for her to read many years from now.

Jason
Guest
Jason

I can relate to this. Great post. It is so nice to see someone dealing with the same things I deal with. Makes the world feel a bit cozier. Thanks!

Rob
Guest

Thank you for this – while my pump has made managing diabetes better, and I am getting all sorts of benefits, etc…..I still hate the damn thing. I hate having a computer strapped to me 24/7, and sex, swimming, taking a shower – heck, even the simple actor of going to the bathroom requires pre-planing to an absurd level.

jose
Guest
i have an animas pump and all this is really over dramatic. i just unplug it and then reconnect it after.. its easy its not a big deal.. but then again i guess the boring reality of it wouldn’t make a good paper..   there is no absurd level of planning. its a very simple thing. Maybe its this false fear doctors put into you on having it disconnected. youll be fine if you take it off for a shower. my a1c is also 6.7. so i dont want to hear how im just wreckless. stop being babies about it… Read more »
Shannon
Guest
Shannon
Thank you for this essay. While I haven’t felt as strongly negative about my pump’s intrusion into my sex life it is clear that you and many others do and I certainly don’t blame you for feeling that way. While diabetes is a different condition than being paraplegic I don’t think your conclusions were at all unfair.  We all have a right to feel our feelings and it’s nice to hear from other people who have the same condition and manage it in the same way and I like hearing how different people have handled their disease and pumps.  I… Read more »
Brendan MD
Guest
Brendan MD
Kathy, I’m glad to see someone sane in this room. Having been a diabetic for fourteen of my twenty-four years of life I’m constantly furious at most diabetic’s capability for self-pity. Yes, the infusion site is not attractive. Yes, sleeping with it on doesn’t create the ideal situation in terms of losing yourself in the moment. These are issues that we cope with every day. But you CAN unplug it. And there are tricks, but you need to use your head. Planning on taking it off for an hour? Prime your pump for half an hour’s basil rate, and prime… Read more »
ST
Guest
Thanks for writing this. I’ve never seen anything quite like it. I’ve been on a pump for 10 years, since before I became sexually active. I haven’t found it to be such a problem in bed.  You take it off when the clothes come off, and then ignore it. Once you’ve had it for a long time, I’d bet that you and your partner will stop noticing it. As obstacles to sex go, it’s not much more difficult to deal with than a belt or a bra. And if you really want to enjoy sex without the adhesive, you can… Read more »
Mary
Guest
Mary

I’ve had a pump for going on 10 years and have never had to put that much work into dealing with it. No major pre-planning, no psychological issues to work through. I’ve never had a problem with sex, either. I don’t even need to take it off.  Perhaps all of you people who seem to have major problems dealing with having a pump ought to talk to a counselor or psych doctor to work through your issues.

Jasmine
Guest
Jasmine
hello all.  i have been a type 1 diabetic since i was 9 years old, on injections until i was 24, and have now had a minimed paradigm pump for 5 years.  i love this pump so much, i named her portia.  portia has allowed me tighter blood sugar control, less bruises, and more flexibility with activities.  i haven’t really found my pump to be awkward or a problem during sex, much like someone else said, it’s kind of like a band-aid.  however, the one thing i struggle with is when i get in water.  i love to swim, love… Read more »
pumpsexy
Guest
pumpsexy
[much of this is similar to the response I just left on the boingboing pointer to this article, but I think it is worth sharing here too.] I am sorry that Ms Kokernak feels her insulin pump interferes with her sexuality. However, in reading her article above, I don’t actually see that this a problem WITH THE PUMP. Perhaps changing her diabetes management has in some way highlighted for her her own ideas about sex, mortality and chronic illness. As a woman with type 1 diabetes who has used an insulin pump for more than a decade I’m sad that… Read more »
Stuart C
Guest
Stuart C

can’t you put it on some sort of belt?

Elizabeth
Guest
I spend a lot of time writing about sexuality, and the truth is that there are things that interrupt sex for everyone – the need for condoms, a finicky bladder, foot cramps, the telephone. Although the insulin pump is more of an important inconvenience, it doesn’t have to be more than an inconvenience. You have to be able to laugh at sex. Good sex is often funny and messy and uncontrollable. Being comfortable with your interest in sex, and your sexuality generally, makes it easier to cope when things go wrong… and they go wrong for everyone, whether or not… Read more »
jp
Guest
Wonderful read! I just started CGM, which means I now have two “things” attached to me. It’s been helping me stay a lot more conscious of the movement of my glucose levels… and that I really like. But at the same time I hate it. I hate it and the pump. I hate it when my cord catches on doornobs, or when someone asks me what it is when I’m swimming at the pool. I hate how it makes me look and the bumps it leaves. But my health is more important than those things. It’s been 2 years, but I’d never really asked… Read more »
Thomas
Guest
Thomas
I started on a pump two years ago after twenty years of injections and only one year of marriage and had many of the same concerns. What I’ve found, over time is that the moments spent disconnected have come to be, in some ways, transgressive, which is fine when you’re a teenager, but not always so great when you’ve had the first confirmation that your diabetes has started to take its slow toll on your eyes. “Untethered” works well, but one has to remember that the site has some sharp edges but sometimes I just can’t be stirred from that… Read more »
NR
Guest
Thank you for writing this.  I’ve had diabetes for nearly 27 years, have been on a pump for 13 years and have been using the sensor for 3 years.  I can relate to everything the author says.  While it’s true the pump has never interfered with my sex life, no partner has ever rejected me upon hearing that I wear this device or seeing it, it does impact choices of what to wear, when sex can happen, and of course the lows that occur during.  I’ve never taken a pump vacation – that would be worse to me than wearing… Read more »
Duana C. Welch, Ph.D.
Guest
Jane, this is by far the best article I’ve read on the sexuality-pumping topic (and there aren’t enough of them).  My daughter, age 8, has been pumping for 5 years.  She knows no other life.  Fact is, though, that as she grows up, she’s going to want to be like everyone else…and as you know only too well, that would not entail wearing a medical device 24/7.  So, to prepare her for a great sex life, here are two things I’ll be emphasizing to her (things that perhaps those living with T1 in adulthood have already contemplated): 1.  Time for some… Read more »
L.G.
Guest
L.G.
Thank you for this article! I found it through Threadbared, and also have the pump. I have been diabetic for around 25-26 years (was diagnosed at 16 months). For sleeping, I actually have a recommendation for you for the pump. I’m not sure if you have ever seen these containers for music devices, but one company, Golla, makes theirs with a belt loop and a neck string, which I use around my waist at night. It moves with me fairly freely, and allows me to remained ‘tethered’ to my pump during intimacies with my fiance. It could take some getting… Read more »
Victoria
Guest
Victoria
Thank you for a well written article and many interesting posts.  My boyfriend just went on a pump this week and we made love the first time with the pump attached just last night.  It was fine, except he had to keep his pj top on as it was clipped to it.  I wasn’t aware it was ok for him to disconnect from it for a short time, although he’s still a long way off getting used to it so I doubt he’d want to do that just yet.  I think we’ll just have to work out for ourselves what… Read more »
JJ
Guest

Two things:
One, referring to a previous comment about battery life, I have been able to use my pump on “low battery” status for up to three days with no problems. Just make sure that you change it whenever you can!
Two, referring to a previous comment about site reinforcement, I use a product called IV prep. It comes in a white and orange box and can be ordered from the Minimed 24-hour hotline. I find them to be quite useful in securing sites when I plan on placing myself in compromising positions throughout the day.
Hope these helped :)

RS
Guest

Thanks for this essay I have been on the pump for five years and could not be more pleased and reassured about life with the pump. Thanks  

wpDiscuz
Copyright © 2009-2016 Diabetes Media Foundation, All Rights Reserved.
ASweetLife™ is a trademark of the Diabetes Media Foundation, All Rights Reserved.