Morphine and Bacon

A story of necessary preparation.

What am I going to say to her anyway? “Hey – can you get me some Morphine?” I would only need 2mg, I think.

Unsure, I go back to my computer, laying my phone on the wide, plush arm of our not-quite-affordable bright orange sofa. I’m going to Google it. I watched Happy Valley. I don’t want to be a statistic.

“Ya, but what if you get fake, I mean, who knows...” begins Tim. I hold my hand up.

“No, I know, I need some from a legit prescription. I need someone with some left over.”

I flip open my computer, and the phone goes face down, though that does nothing to change its ability to allow anyone from anywhere at any moment to reach into my mind and change the task I’m doing.

“Why am I on Instagram? What was I doing? Oh yeah…”

I often switch between the two devices, my phone vibrating once I’ve silenced my computer or vice versa. Actively ignoring the world is a form of discipline. I carelessly leave my phone more than three feet from my body for hours. It feels like an act of recklessness subversion. Sometimes it is.

I often spend time silencing devices all the way, from every menu possible, so I can have one uninterrupted thought and complete a task. The problem with this is that the little orange button on the side, which says I will be silent, is only one of a hundred and eighty-two ways to ask your phone to change how it reaches out, needy, to you. Periodically, I simply delete apps, disappearing off the netscape for weeks of blissful brain break.

It’s not really a problem; I don’t miss much that I can’t get back to you on - most of the few people in my small but growing orbit know I try to stay offline. But inevitably, my phone buzzes and beeps and vibrates when I have asked it to stay silent and is resolutely silent when I need it to alert me. Living in London, my phone is now also my doctor’s office and the only access to medical help. All menus opened, and “please make sound” requested, but it still stays silent, voice message notifications arriving by equally stealthy text. “This is Your Neighborhood Surgery returning your call…”

I have a suspicion that roughly one-half of the anxiety medication requests the NHS is over a year behind in prescribing stem from the anxiety of waiting for and missing the one phone call a year you get. If you are lucky enough to connect with a specialist after managing to get a referral and are still alive when they do finally call you, its likely you’ll miss the call whether you’ve silenced your phone during the eight-hour window or un-silenced it. Or you have bad wifi or a train strike that day. Why do train strike days also feel like call-drop days?

I build a spaceship on my sofa and sit in the center. I will solve this problem. This is what I do. I fly the spaceship of logistics through every unnavigable blockade in my life. The cockpit, from left to right today:

Green Spiral (law ruled)

Brio, yellow.

The sensation of the ink coming off the ball and embossing itself on the nearly glossy surface of the thick, oddly narrowly ruled paper. It is so hard to find this paper: wide margins on the left, super skinny lines, 500 pages bound by spiral, blank cover.

Bastard out of Carolina, The Swimming Pool Library, When I Dare to be Powerful, BodyWork, and, inexplicably, Mr. Blandings Builds his Dreamhouse. All but the last bristle with page markers, BodyWork is flipped over on the pending page, breath held, thinking I’m coming right back. I’ve thought that since 9 am but this problem won’t go away.

“Immogen says she can get anything. I dunno, does it have to be Morphine?” I ask my husband, seated across from me in the first chair I bought for our newly rented upright and empty English home when it was 50% cheaper. Four years ago, when we moved into its gleaming empty promise, we still had hope and a little cash in the bank.

The chair was a gift for him then: the dislocated. It was a promise of a bright future I would build for us in romantic, exotic England. It is a beautiful mid-century modern remake done by Anthropologie in deep teal, sure of a short pandemic and stylish cocktail parties to follow, laughter, and the art set draped elegantly around our rowdy living room. The chair became a favorite with impractical but pleasing proportions, but the cocktail parties never materialized.

It is such a beautiful knockoff that stylish Tim, with a bad back, sits in it every day, all day, while he works in his slippers at his job, which is actually in Rhode Island. The arms have yellowed, and the nap is sticky where his elbows have rubbed it down. Four years of phone calls, meetings, and meager money transferes, all managed from this chair.

He looks up, the glow of spreadsheets in his trusting glasses. “Dunno babe, you don’t like Codine. What do you think?”

“We know Demorol works. Dilaudid, not Vicodin, I’d puke it up; we need it to stay down.” He goes back to typing. I’m thinking out loud, working the problem.

I pull the duvet over my feet. It’s only October, but the cost of living crisis marches on, and we will not be turning our heating on again this winter. It’s a beautiful home. We heat it by candlelight in the evenings and hang blankets over the doors to the weedy garden we can no longer afford.

The duvet is stuffed, practically, with a thick down sleeping bag from Home, from our snow-covered cabin in the rocky mountains. It makes a funny noise under the cheap velour cover, a sound which should be accompanied by the unzipping of a tent and the smell of pine, and the sound of a jet boil heating up some high-octane coffee before the day’s adventure, but it’s not, it just slithers down to the bottom of its improperly paired cover, but there’s nothing warmer. (And under that, a little pillow under my knees, a thicker pillow on top, computer on pillow, cat on computer.)

Then, on the right, usually, my buzzing phone, face down, a physical list I’m scratching things out on as I attempt to stay located in space/time and on track with whatever grown-up me is meant to be in charge of - today, namely - almost but not quite dying.

Some charging cords reach hopefully toward overheated, disorganized devices bristling with potentialities - poems and images and publications no one will ever see. On the armrest, there are two remotes, neither of which I can use when Tim is in the room, and he’s always in the room; this is his room, the living room, the room with the teal chair.

Next to the remotes are the two books I’m actually reading, The Secret Hours, which is not on my list but which I can’t stay away from real quick, and the Lover’s Discourse in spurts, then a stack of the four I should be reading but am not, the one I want to be but really can’t, a bucket of Orange Peel and Cinamon decaf tea, some headphones I never use but always have with me; but nothing is ever really worth putting them on, pairing them, testing them, making them work. “Babe.” Tim is looking at me. I realize the jazz is playing through the living room speakers. That’s why it sounded so quiet.

“Sorry,” I say. He smiles. Makes the “I’m on the phone” gesture. I hate headphones. If I want sound, I go to the studio. Home used to have jazz on, but Tim is on the phone more now, so home is silent, which I don’t mind. The rain is louder if you crack the window a little, and it’s not that cold yet.

Tim and I are okay at spending our days together, but we’ve learned to love our privacy, me in my studio, he in his rainy room in Rhode Island.

Most of the time now, I’m at the studio all day, every day, making and writing and cooking and eating and planning and undoing and doing. I do this six or seven days a week, and Tim and I spend every evening, no matter how late I come home, and Saturdays together. In the evenings, we watch television for an hour until I fall deeply asleep, leaving Tim to whatever he does at night - whatever it is, it does not involve any form of sleep, only longing for it. Sometimes, we pass each other as I wake up in the still dark, deeply refreshed and brushing my teeth, bursting to get into the world as he pulls the duvet over his shoulder and rolls toward the greying wall, closing his eyes against the gathering dawn.

Once he’s awake, we spend either roaming the city in search of art or fixing something at the studio together on Saturdays. Making the boat go faster.

Completing this circle of ultimate freedom and creativity that is the Sofa Spaceship is a liter of coconut water, a sensible Tupperware about half full of pre-ground weed, and nice little turquoise blue pipe to smoke it with, cold feet, and a heating pad which migrates around me depending on what I’m healing up at the moment. After a lifetime of disciplining this body, it bears the scars of my strict and cruel love.

I don’t fly my spaceship often anymore; this is a remembered habit from what feels like lifetimes ago but is a reality that only ended this past March, a new and impossible branch forming, a way out, a way to today. Six years I had spent bed-adjacent or bed-bound. Six years of navigational skills learned through a fog of mind-warping pain. No longer. Well, sometimes.

I’m in the spaceship today because I think I might be coming down with a cold. I live in humble servitude to homeostasis; I bow at the feet of the only god I know: the body’s stability. I give it an army of white blood cells; I lay down still at the slightest provocation now so it can go to war. I try to focus, to work, but eventually, I will surrender as Bosch calls me, the habit of my broken years whispering its wisdom into my new, eager youthful body. “Rest, stupid.”

The body I broke, the body I punished, the body I love, the body which has been so sick, for so long, and so ignored for as long, so many scattered clues lost amongst the false flags of “woman,” some I believed, some they believed, it really doesn’t matter, it was all in ruins, and now it’s not.

For the record, it wasn’t anxiety, depression, or menopause. The very first NHS doctor I saw, weeks after we moved to London from America, wheeled his little stool over to me, wove his scrub-clad legs between mine, slid one knee down the inside of my thigh, and rested his scrotum like a pillow against the outside of my right knee. He rolled his stool to and fro as he examined me, his scrubs straining against my leg. I never went back.

I don’t have a record of who he is, now I think I should tell someone, but there is no central database, no place records are kept, no one knows I saw him, no one is watching the system, the record of my body in London is scattered across the pavement like a carefully ordered manuscript left in front of an open window during a class five hurricane.

After a fourteen-hour wait on a hard plastic chair during an acute episode of this intense mystery illness, one doctor in the A&E said, “My wife sometimes has terrible nerves at night, and I give her something to calm her down. Would you like that? Something like that? To make you feel calmer in the evenings?” Did he just tell me he medicates his wife into blessed silence every night?

Do I want to be numbed so I’m not a bother? No, I want to get out of bed and be a force of nature that tunnels a hole through the world and punches out the other side, tearing back the cover of society as we know it and weeping with my sisters over our shared trauma. Come to think of it, I can see why he’d want to medicate that impulse. But that’s not why I’m in A&E; I’m here because I’ve had crushing chest pain for days, and I passed out on the train and hit my head when it came on suddenly.

Another doctor told me on an urgent GP visit for the same complaint some months later: “Well, your ovaries have failed completely, so we know you are in menopause. You should be on HRT.” I was having hot flashes, he explained to me.

Soaking, roaring, flushing hot flashes every twenty minutes accompanied by blood pressures which, when paramedics looked at them, they did not believe, only to test again and again, waiting for it to fall as the nitrous kicked in.

“That’s better,” they’d say as it fell from 193/156 to something more reasonable as I breathed in the gas.

“I didn’t believe that first reading anyway.” they’d say.

“She was anxious before, now she’s more calm, this is a more accurate reading.” they’d say.

“Yes,” I replied to Dr. Mansplainer, blinking a bit; I was indeed in menopause; this had not been a secret; it had come on quickly when I was 47, and they began treating me for breast cancer.

I’d never heard it put this way, though. I wasn’t here about my ovaries, though the report coming back to me about this chest pain, this abdominal distension was that my ovaries had failed completely. Here, I’d thought they’d performed admirably; I’d bled dutifully all my life and produced two completely new human beings from them.

Still, feeling happy to know that I’d not be burdened by cramps and breakthrough bleeding and sudden bouts of diarrhea anymore, and the intensity dial on my emotional radar would no longer get fine-fucking-tuned twice a month as my cycle cycled, I was reeling a bit from the statement.

Does society have a function for a woman after this? Did I have a function? I was fifty, fat, grey, and unwell. I was disbelieved and unwanted. Wait. How did I suddenly arrive here after years of learning to value myself for any quality other than the function and aesthetics of my suddenly dysfunctional rebellious confused body? “I can’t have HRT; I had breast cancer.” I reminded my doctor.

“Fucking doctors. Fuck this place.” Says Tim, not suddenly, but always angry. And maybe rightly so. Maybe my “Let’s work the problem” thing is just people-pleasing. Maybe I should be shouting from my failed ovaries that this is not hysteria; this isn’t menopause. This is something else that brings real fear into the deepest heart of a person who has spent their life staring down the barrel and training fear out of them. Something that is trying to kill me.

I open WhatsApp, the decision made, the lag from switching between my phone and the computer just long enough for my mind to hit pause again. The messages loading gives me the moment: Jesus that’s a lot of communication over a very short period. What 126 messages or something since I was on my computer an hour ago? No wonder I can’t focus, can’t get anything done.

What am I going to say to her? Maybe I should try Emma. John had his back fucked up for years; I know he had morphine. I would only need 5 mg, I think. But a pill, not liquid. I picture myself asking Emma if I can have some of her husband’s leftover drugs, and then I imagine trying to tell her why. “So you can bloody kill yourself? What the fuck are you playing at? I have children, my friend. I have responsibilities. I will not give you medicine you know very well could fucking kill you just by looking at it. Jesus Christ, we lock the cabinet when you visit, push it to the back, and put the cotton balls in front so you won’t be tempted. See you next weekend.”

Fuck.

I just let it hang in my mind, and the world contracts again, and I am spat out, explaining to Tim, “I should try to take it eight hours before the scan on an empty stomach. It will peak at eight hours.” This pill I can’t get my hands on and am now convinced is the trick to catching the doctors up to us.

He looks at me, following the plan, brows a bit knit. “And then, what, ask them to wheel you directly into the A&E?”

I shake my head. “I won’t have to ask them. It will be clear.” This picture begins to form. Toes curled, knees bent, back contracted. My left torso peeled up off the gurney, shallow breath, left arm contorted and fist knotted into my lower left back, so I have a knuckle-shaped pillow to lift me off the searing white hot…

“From the image on the scan?” he asks, his face practical; he sits in his chair across from me, legs crossed, computer perched on one knee. He’s been Googling “how to spike your Lipase.”

But I’m beyond him now; I’m in the future reliving the last accidental “flare-up.” We’ve both read the website. All of the websites. And the reddits, late, late into the night. Acute pancreatitis attacks can be fatal. They require urgent medical attention, IV fluids, and nil by mouth, especially any narcotic or opioid.

I can see the white dome of the MRI machine, feel the nervous new junior doctor fishing for a line on my dehydrated arm, I can feel the pressure in my chest like I’ve been shot through the ribs on the left-hand side, but days ago, so it’s an angry, pussy wound, throbbing out the back. My abdomen distended like I’m eight months pregnant. How could I just have thought I was putting on weight this whole time?

Because I’d put on weight. Most of us had. There was a pandemic. That, and I was bedridden. I had put on weight but - suddenly a new truth came through. The terrible, terrible bloating. My clothes changing size by two or three numbers, so that’s inches – what do they say 10lbs to a dress size – over days or hours. I had thought it was my period or that I’d given up on diets and moderation now I was so ill. I thought my waistline was suffering the effects of a serious cheese addiction which me feel happy about something whilst being tethered to this orange couch. (It turns out the cheese addiction was causing the trouble, just in more complex and insidious ways than we realized.)

And, anyway, we aren’t supposed to talk about periods, not if we are mountain women, as I was, had been, and would never be again.

And if not mountain women, we are ladies, and sometimes I could be that when required. So, I never said anything about all the pain, distention, and swelling because I thought it was all from my period. I didn’t know my kidneys hurt my lower back, not menstrual pain. I didn’t know the constant pain in my left ribs for the last eight…ten..? years was something to tell someone about. I think I did once- I told a doctor where we used to live, ‘No, nothing else. I mean, I have this little pain in my left ribs, but I kind of always have that. I think I broke a rib or something. I mean, I know I broke my ribs years ago, and it’s kind of always hurt since then.” And that was that.

Only it wasn’t that.

And now, we’d figured it out ourselves. Finally. Eight months ago. March 2023. All the research gelled as I was putting it together to bring to the GP, hoping she might do a referral to a real pancreas doctor. There are only three in the UK. I was six months through a year-long wait for a follow-up from an unremarkable endoscopy/colonoscopy whose purpose had been to search for the locus of the same problem and coming nowhere near my pancreas in the process.

This follow-up would be my last shot to get the NHS to consider pancreatitis. All pancreas investigations start with Gastro, oddly enough, as Gastro isn’t the same specialty. Pancreas goes with liver, gall bladder, hormone and enzyme. This is why Pancreatitis and all its assorted ailments are underdiagnosed and often fatal. Especially in women. Because pancreatitis is a man’s disease.

If you were 62, and enjoyed a bit of drink, they’d work you up a week from Sunday, schedule biopsies and unnecessary surgeries, and put you on the urgent pathway. I know this because Adam, who owned the yoga studio where I was rehabbing my healing body, couldn’t get them to leave his pancreas alone. He was fine; he kept insisting. We want to operate, they kept telling him. I sat on the steps of the yoga studio, tying my shoes and holding back hot tears as he explained how he had to fight to get them to stop treating him. His lipase was in normal range, and his pancreas was not scarred or bulky.

So this is my shot - a follow-up with the gastro team at our local hospital. If they believe me, maybe they will want to treat me so badly I’ll have to beg them to stop, like Adam. This follow-up was to be ten minutes long and over the phone. No video. When the call did finally happen, it started like this:

“Well, I certainly hope you have been feeling better because it looks like we tested you for everything under the sun, and nothing came up positive. I certainly hope you don’t need or want any more testing because, at this point, I am not sure there’s anything more we can do.”

I took a breath. Seven minutes. Seven minutes to convince her to try. Tim and I had figured it out; we had taken it – eighteen pages of research using my own almost normal test results cross-referenced the slight anomalies with vetted medical research papers found online to the GP. It took a month to see her, and when she read it and me, she agreed completely. We would present this to gastro at my follow-up. There was no way to be “seen” sooner.

The gastro - I didn’t need seven minutes, I convinced her in three. I am disappointed to report that 100% of the time, I feel I am heard, believed, and understood when I see a female doctor, and that when I see a male doctor, about half of them are very cool and super helpful and the other half are absolute assholes.

All the tests were triggered, ordered, all the things he wouldn’t see – Dr. Broodman, the expensive private physician I had emailed about five minutes after my GP had agreed with me. It was a stupid thing to do, a moment of ridiculous hope. My GP had said yes, she’d do a referral, and I couldn’t wait.

There was a moment in his office when suddenly, I understood what class was. I had thought being American excused me from this disordered system. Being untitled and female and on my knees with illness did not work in my favor. I had brought with me the eighteen-page report I’d written, all the research I had done that the NHS hadn’t had time to do, to think of, to look at, to try, to be curious about. Everything that my GP, a woman, had agreed with, nodded at, everything that had convinced her.

I had brought my sore and distended belly, my tender back, my yellow skin, my unrelenting nausea, and fatigue to this private pancreatic specialist at a cost of three hundred and seventy-five Good British Pounds. He touched the body, he recoiled at the pain and the coloration, he made soothing noises, and he told us both, Tim and I, that if we were patients of his with unending resources, he would order this test and that test and all the tests to rule everything out, but instead, he would order an MRCP and a CAT scan through the NHS for us in this very round-about way so we could cue jump as I was obviously exceptionally ill and we obviously could not afford private care.

It was demeaning but true; we needed the NHS, though we’d sell what we could and ask family for help to get those tests. Not necessary, he told us. We have ways to get you on the pathway in the NHS. It was not quite as demeaning an experience as the private kidney doctor I’d seen in desperation a few months earlier when I was passing kidney stones for a week. He who barked at me that he couldn’t abide fidgeting and would I wait to get dressed until he had finished telling me why he was also going to refuse to order tests.

That night, leaving Dr. Private Pancrea’s office, not knowing (in so many ways), we celebrated. We walked slowly, tranquilo, after smoking some weed around the corner from the pillar-facaded office in one of those lovely little side gardens that populate London and carrying on toward the river on the Chelsea side. As we strolled slowly, hands in pockets, looking at the rainy reflection on the pavements, a favorite pain management strategy of mine, we happened by a tiny Italian restaurant.

Eating out was something we could not afford but loved to do. We had a reckless control over this desire, but the promise of a tasty, tender morsel, meat dissolving off the bone in a tender sauce as we held hands across the table, talked about all the things we would do, all the ways we’d be in the world, all the countries we would adventure to, all the food we would eat along the way often overpowered our need to keep the purse strings tight, and we would slip in, together, secretly delighted. Maybe they have seared scallops.

We looked at each other, ducked our heads, and descended the stone steps, the cozy atmosphere drawing us in. The door opened to the smell of Napoli, garlic, olive oil, and acid tomato. Small tables, six, maybe. Close. Candle in a glass globe, smooth white cloth. Photos on the wall right behind Tim, black and white? I don’t know: all I remember is a feeling of bliss: I had been heard, we were together, close, leaning in, heads touching, hands caressing. Was that my body feeling sensations other than pain, hope, or dread? My skin stood at attention for the first time in years.

Tim felt it, too; he was grinning. He ordered an Old Fashioned. I looked at the menu. Risotto. But a dawning realization: I’d have to give up alcohol. It makes me so sick anyway. I haven’t liked the way it tastes for the last year. Why have I continued to have a drink whilst silently bemoaning how bitter it tastes?

“If I have some pancreas issue, I guess I shouldn’t have a glass of wine,” I said. Tim frowned, sorry, knowing I love a glass of white burgundy on a special occasion. “Yeah, but drinking always makes you feel so sick, anyway, babe.” Whatever. Some things would change. Nothing we couldn’t handle. Hopefully, they’d find a little benign tumor on my pancreas, cut that fucker out. We’d be on our way, clouds parting, sunlight beaming, the path to the future unfolding in blissful abundance as my healthy mountaineer’s body reconstituted magically around me two days post-surgery, surely to happen by the end of the week. We’d waited so long.

I looked at Tim as my mushroom risotto arrived, steam curling off the sticky plump grains as the waiter grated the parmesan, melting upon feathery impact, bonding lovingly like a blanket to the jumble of mushrooms and risotto below. I can smell it: the sharpness of the freshly cracked peppercorns, the tang of the rasped cheese, the earthy aroma of mushrooms sautéed in olive oil and slow-cooked in the grain with chicken stock and wine. I loved making risotto. I loved eating it even more.

“I’m going to get healthy, babe,” I said, thinking through the meeting with Dr. Pancreas. He had heard me. My heart kicked over a beat. I believed it.

“Yes.” He said, his careful eyes starting to shine. Tim was one for certainty, not daydreams. “Did you see him jump when he pressed on your belly?” I nodded. After so long, we had to check in with each other. No one had mentioned menopause in that room. I was going to be believed, imaged, treated, healed.

“We are going to go climbing together,” I said – daring.

“Maybe.” He said, smiling. Tim loved climbing. But his back had hurt for years, and he had tendonitis from pulling so hard when we were younger. He didn’t know what weakness felt like when he was so strong, when he had mastered his body so that he didn’t have to face his mind. Now, three years into the pandemic, his first forty extra pounds strained against his sense of self and told him he was finished.

“We are going to go skiing,” I said, with finality. He gave in.

“Yes. We will go skiing.” He said. “Maybe we will? Who knows?” I looked at him.

“And we will have sexy, romantic dinners after a long day in the mountains. We will ride motorcycles from inn to inn. Maybe not from campsite to campsite anymore, babe, but inn to inn, yeah? We could do that, don’t you think?” I said, spooning mouthfuls of burning hot risotto and making a blister rise on the roof of my mouth. I would worry this with my tongue for days to come.

The letter from the doctor came a week later. I tore it open, ready to see when testing would start. This was efficiency. Here would be the tests scheduled, the differential diagnosis.

I can’t even paraphrase it. It’s too bland. It said there was nothing wrong with me, would I mind very much fucking off. It was so confusing, and I read it so many times that I didn’t even know how it said that. Only that it said, essentially, that. I was stunned. Tim was stunned.

Suddenly, my minor psychological victory at being able to ask Tim along to one of my medical appointments was finally a major coup. He’d never been. Not to cancer appointments, parathyroid appointments, kidney appointments, radiation burn appointments, possible brain tumor appointments, this kind of cancer, that kind of investigation, none of it. I couldn’t handle it. I needed to withdraw and do it alone, I had thought. Just this week, I decided that maybe this was selfish and also lonely for both of us. He wanted to come. He came. He was a witness.

Tim stared at me. “What the actual fuck, babe.” Welcome to my world, lover.

We called the secretary. “I’m sorry, there seems to be an error; the letter we received is almost the exact opposite of everything Dr. Webster told us while we were there with him,” I explained.

She replied: The doctor had realized that the 18-page report, which he had gone back to refer to in order to create this patient letter, was sent by me and not my GP. She had offered to make a referral and had indeed made one, but it was still pending in the system; the secretary couldn’t see it, and the doctor couldn’t see it. I had been afraid of how long it would take and thought I was dying. Instead of waiting, in my American impatience, I emailed on my own, asking for a private appointment to speed up the process, and I had attached this document.

It was the same report I’d used to convince the GP, I explained to the secretary. The referral was coming. It didn’t matter, she said. Dr. Pancreas was not able to give any further help. I requested images anyway. He said no. My GP thought I had a pancreatic neuroendocrinal tumor. We thought I might have two weeks to live. Dr. Pancreas had nodded at this possibility in his office. This was what had made us so elated. Not having the tumor, but being heard. Getting to a pancreatic specialist is a years-long process, and I had no cancer markers in my blood, so no line-skipping privileges for me, but still, sometimes PNETS don’t leave traces. I’d been living with two and a half weeks to live for over a year. In compiling this report, I’d been trying to help. Trying to save my life, trying to keep the disease, if I had one, from advancing. The secretary hung up on me.

Tim and I looked at each other. I went back into my spaceship, fired up Dr. Google, opened my symptom log, and started again. By now, I had access to medical studies through JSTOR, so I started looking through PhD papers. And then I found it. I found me. Exactly. Again. It was March, 2023.

Fuck it, I told him. We will do it without them. Here’s the medical protocol: if I had been admitted to the hospital with rebound pain, distention, and no position of comfort like I was presenting when we went in, with that blood pressure and the rest of it, this is what they would have done:

Nil by mouth for ten days. (Feeding tube).

IV hydration with a cocktail of vitamins and minerals and anti-inflammatories.

A month on a clear liquid diet

Introduce plain rice.

Tiptoe in from there.

No alcohol, no fat, no caffeine, no sugar, nothing highly processed. I can eat fruit, vegetables, and legumes, and that’s it.

“We need to find a hangover doc,” Tim said. And so, for three months, after treating Mille Bobby Brown with her weekly B12 cocktail, Sharon, the nurse, would come to first our orange sofa in our upright English house and then to my art studio and bathe my pancreas in a liter of saline and fill my body with all the vitamins and minerals I wasn’t getting from plain rice and oranges.

Space ship dismantled. Life resumed. Sixty-two pounds lost in four months, walking, walking all over London. Clear eyes, long brain, smarts back, poetry and philosophy, and art and theater and oranges.

Safety was the studio where safe food was, but I’d been trapped in bed for six years, or crawling to my obligations only to stand propped up like a Weekend at Bernie’s version of myself, going through the motions.

I ventured into the city with a backpack full of 22 tangelos and a liter of coconut water. I ate one tangelo every 20 minutes to combat the ride I would take on the smells criscrossing the paths to everything interesting in the city.

London constantly smells of two things: of damp and food, of deep-fried crispy chaat with spurting pomegranate, thick yogurt, toasted cardamom and chickpeas, Indonesian stirfry in thin brown sauce, and Turkish kebab dripping down your hand and French pan au chocolate, flaky as heaven, buttery laminations begging to be licked from your fingers, brushed from your clothes, and thick, stick-rolled udon noodles with pork cheeks and egg floating on a slick of toasted sesame oil in a deep porcelain bowl.

“We need to get this right,” Tim says. Anyone would think we were planning a murder, a serious crime at least – and I suppose we were, but it was the most absurd crime a person could plan.

“It will be clear because I’ll be in pain. I need it to peak at the test because when they push the contrast, they will also push fluids; that’s why I always feel better after a trip to the A&E in America – they automatically give you saline. It flushes the pancreas. I mean, it flushes everything.” Tim nodded, thinking back to dozens of trips up the four-mile drive to our local hospital in the mountains in America where we’d lived, where they could do nothing for me other than give me saline, which they always did and which always made me feel better, along with some sleep. Hours of waiting, hours of saline, a few hours of sleep, and yes, it had eased a bit; I felt better, and I could go home. Everyone was puzzled. I was so ill. Then I was ok. They’d done nothing but give me saline.

“It was the oral pain meds that made it the worst, though, wasn’t it?” That’s how we’d gotten here, to this absurd idea about Morphine. I have another MRI coming up this Wednesday – I’d convinced the gastro to do a pancro-billiatory work up - a special one with a special camera pointed right at my special pancreas. We need a fucking diagnosis.

We know the problem – we’ve tested it and proved it ourselves. We also know that, unattended, it can become fatal. We know it’s not right now; we know there’s no cancer. (Yet? Ever?) We know there’s a 40% chance of developing cancer, we know that a diet like mine is dangerous unsupervised, we know I already have osteoporosis, we know no one is monitoring any of this, we know I’ve lost six years of my life, and we know what I will look like when I am seventy. But I’m fifty-two, and I was a blisteringly healthy 46 six years ago.

Now, I’m aging in reverse; I’ve got whiplash; I’ve turned 50 again, as I clamped down my appetite with the discipline of a mountaineer on tight rations with three ridgelines to go before camp, I have lived every step of the last eight months of my life in search of a pain-free moment full of blissful homeostasis.

I have attended 82 hot yoga classes and done another 12 home practices. I have walked an average of two hours per day, roaming across the city, building my strength, feeding every insatiable need for air, and understanding born of the open air. My lockdown was so much longer than this pandemic. There was no staying in shape behind closed windows, no training for the release. There was the iron grip of my bed and my will to be alive, which I proved I was by staying in school through the entire ugly episode if six years can be considered an episode.

I emerge I walk outside, I bend double gingerly to touch the cobbled stones of King Henry’s towpath, the bastard. I sit on Turner’s bench and wonder about Catherine Beech; I weep at Wolfgang Liab and get slowly, carefully back off the ground. The swelling subsides, I can move more, and I climb with Tim on the Tors of Dartmoor. I am coming back to life. I am coming back to me.

Therefore, I am scheduling my destruction into our diary. “Okay, I’ve saved up seven Valium,” (this being the only strong pain killer I can take by mouth without causing an acute pancreatitis attack). “The blood test is Monday at 8:30 a.m. Elliana’s doesn’t open until nine.” I frown. I’ve been dreaming of George’s eggs benedict since we hatched this plan.

Suddenly, my father, a pang of intensity, of sadness, of longing, of connection, shoots through me. He, reaching over to my plate with a doughy, lightly toasted bit of English Muffin. “Here,” he says, in my six-year-old’s memory, mopping up some egg yolk and the rest of my hollandaise sauce. “You are doing this wrong. Let me show you how to use the bread to soak up the sauce. You’ll never get all the sauce doing it that way.” And there goes the last of my delicious warm, thick light yellow sauce, just a little lemon, just a little Tobasco, into his grinning mouth, his short white whiskers flecked with grey. Or did he have a beard? Now I can’t remember; I was so young, and he died so long ago.

I loved this soaking up the juice joke, you see, because he knew how to make hollandaise, and there was always a little extra he’d saved, and there was always enough to go around, and you could always have as much as you wanted especially if you drug your asparagus through it.

“According to this, you have to fast before a Lipase test for eight hours,” Tim says. I break from dreams of eggs benedict, of days when my father was alive, of life before I knew it was complicated and painful.

Wait. Really? Thank fuck. We had been planning on starting me on a cheese drip Sunday night and keeping it going through the MRI on Wednesday to ensure that the pancreas was throwing out whatever markers it could. Right now, it’s sore sometimes. I’m hungry all the time. It is quiet, a pussy ogre spelled into a tiny, putrid jar and tucked under my broken and re-knit cage of left ribs. I don’t want to let it loose again.

“Is it a Lipase test they ordered or a test to see if your kidneys can handle the contrast?” he asks me, though the question appears directed at his laptop.

“I don’t know…” I answer, “A computer booked it for me.” I hastily call them back; it’s 5:15 p.m. on a Friday. Hospital is closed. Except it isn’t. It’s closed if you don’t have a diagnosis. It is closed to all who have no answers to why they are so ill.

“Call the GP.” He says urgently, his left eye magnified to nearly twice the size of his right through his one thick lens where, as a lithe young university student, he’d taken a racquetball directly to the eye socket and almost lost his vision before we knew some things couldn’t be fixed. Back when we thought everything always healed.

I call. Alberto is lovely and always kind from behind the harried front desk of our local surgery, but the Hospital is a closed system; he has no record of the test being ordered, and he is unsure if it is a Lipase test or a test for the contrast (though now I suspect it is the latter). I remember during the two minutes left in my conversation with the gastro that she had said something about new bloods, but I don’t remember now if these are they or if these are from the triage nurse whom I told I have kidney stones to when we booked the MRI. There’s no way to find out. Was I supposed to book another test? Sometimes they call you; sometimes you are supposed to call. The letters they send come after the appointments, and the texts they send come moments before, disconnected from any context.

Fast or Feast? They have to see the lipase in my blood at 3x normal, not just slightly elevated as it has been in all previous tests – that’s part of the criteria for diagnosis. If you fast for a Lipase test, this tells me it’s present even if it’s not being triggered by eating. I feel relief. Fast, I decide, and days of pain recede before me, but along with them, the crisped edges of cooked pork fat sizzling along the edges of overcooked bacon, being crumbled by hand into a bowl over spaghetti. I know I shouldn’t want these things.

For three weeks, about two months into my new diet – toward the end of the rice and oranges phase and heading into the discovery that I can tolerate less than 20 g of fat per day as long as it is derived from medium chain triglycerides (coconut or palm, and fuck palm, so coconut) I started having incredibly strong olfactory hallucinations. Fat and salt, I would hallucinate. I would be sitting on the floor in my studio, glue gun in hand, neck deep and miles away, working on a piece, and suddenly, baked lasagne, the cheese browning, right under my nose. Thick, chewy pizza crust, with barbe-q sauce, chicken and pineapple, spiced fondu soaking on gherkins, raclette being scraped and dripped over cured meats. I was drowning in scents that weren’t even in the air.

After this phase, I was okay for a long time. I stabilized, found two recipes, made giant pots of them, eat the same thing at the same time every day, still feel hungry all the time, but have killed stone dead almost every craving possible with a machete and a bludgeon and yoga and work. My entire world tastes like coconut. I got through he caffeine withdrawal, the sugar withdrawal, the love and desire. I surgically replaced these wants with new radical noticing of the outside world and the translation of that experience in my art practice.

And then it was my birthday, the day war broke out in Israel and Gaza, and Gina made me “cookies” of a sort, Pancreatic Surprise Cookies, made with organic palm sugar and barely any ingredients. I took a bite of one and started weeping, my mouth exploding with the sweetness, no sugar at all for eight months; at first, I could only eat a bite, and then an hour later, the rest of the cookie and two hours later four more of them. And then, a little pain. No position of comfort when sleeping, a swelling under my left ribs like a baseball had turned into a cantaloupe, and everything was a bit crowded and chafed at being pushed together. Sometimes that part of my body makes strange crackling and popping sounds like something just under my ribs is gurgling. I always thought it was fascial adhesions from breaking my ribs trying to prove to Keith Harpot that I wasn’t scared to drop into a pool on a skateboard.

He left me there, Keith had, at the bottom of the pool, after I could sit up, a bit dazed and wheezing. He told me I was stupid and wouldn’t help until I admitted it. He sat on the rim of the deep end as I laughed in answer, and only then, with the force of that short bark, realized that they were really, truly broken and I would need his help to get out of the bowl. He was, after all, a qualified paramedic and an unparalleled douchebag.

For the next four days after Gina’s cookies, a relentless voice haunted me, one from my teenage years, one from another form of survival, one from the past of my disordered eating and my controlling step-father, he who weighed me, he who hid the sugar and told me I was a fat whore. This voice, long since tamed, roared into dominance once again, shouting impotently but still loudly enough that I could hear nothing other than “PRINGLES. Pringles. Pringles. Sour cream and onion pringles. Go get them right now. Get out of bed and go find them and eat them all. They are ten minutes away. Salt. Fat. Eat. Crunch. Pringles. Eat them. Salt on your tongue. Crackle. Chomp. Whole can. Feel your hand in the can. Pringles. Doritos. Cool ranch Doritos. Lick your fingers off the spicey ranch coolness after they are caked. Eat me eat me eat me what the fuck can you eat? Go find something, look, look look for something to satisfy me.”

Anything that would satisfy this voice would also kill me. In moments like this, I will microwave a plain bagel and eat it, placatingly, in the middle of the night by the light over the hob in my bare feet, my too-large underwear hanging loosely around my now-exposed hip bones. Its highly processed nature isn’t great for me; if I do it more than twice (once a day, two days in a row), I will pay in swelling, diarrhea, and pain. If I do it once, I will pay in pain, but I lived in so much more pain than this for so long; I pet the raging beast back into its corner, placated with the mouth feel of warm brioche, and go back to bed.

“Well. What about it, though? Let’s say we fast for the blood test, and tell them you’ve been fasting, so can they also do a Lipase test, just in case it hasn’t been ordered. And then we eat for the MRI.” Tim said we. I love him for this. The tech won’t do a test that wasn’t ordered by a doc. I will ask, but they will say no and send me back to “the doctor.” Which doctor, and how to reach them - that’s a different question, and not their problem, and honestly, after years of working for less than people make scanning groceries at Tesco, I don’t blame them.

I agonize for a moment. I’m going to get a meal, or three, before Wendsday if we choose this route. Now at least we dont’ have to start on Sunday night, but we need to get this pancreas angry before the scan, and I’m terrified and tantilized at the same time. I can eat again, the first meal will be bliss, twenty minutes later the pain will start, four hours after that I’ll be in agony, and it will be time to eat again.

Quick: you only have three meals left in your lifetime: what do you choose? There’s no time. I can’t choose, I don’t even know what to think about, or if I’ll even be able to enjoy it, or honestly keep it down, and yet the desire is already beating it’s fists against the cage of my willful control. I can’t fly to Switzerland and go find the guy in that little cabin who made that incredible fondu. We had to hike through the forest to eat it, a dozen drunk friends one Spring night in Wengen, promise of an expedition to Antartica unfolding before me, glimmers of where I was headed, before my body slid into the parallel and invisible world of illness and erased all of the lives I’d built along the way, all the possible ways those lives could go in the future, and pointed only to bed, the ground, the earth, and nothing.

“Food will make me sick, but if I hadn’t taken that last pill before we knew it was pancreatitis, I could have taken that and been done with it!”

Tim looked at me. “You mean the pill that sent you to A&E the last time?” I’d eaten at Five Guys on the way home from somewhere, strolling, and that had brought on raging pain hours later… long enough later that I couldn’t tie the two things together, even though I’ve had my gallbladder out, and for the same reason with the same time delay two decades before. This, by the way, is an indicator of pancreatitis - past gallbladder issues.

That Five Guys episode had hurt so badly that I’d burned myself wrapped in the heating pad trying to relieve the pain, and late at night, I’d given in and crawled into the cupboard under the sink in the dark of the bathroom and gone through our emergency medical kit, the one we used to carry into the mountains on our skis, on our motorcycles. I knew there was one 2mg pill of Dilaudid in there. It was the one strong medicine I could take that didn’t hurt my stomach. We thought I had an allergy, or an extreme sensitivity to many kinds of medicines.

I ate a banana to have a base in my stomach, popped the pill, and went back to bed. Six hours later, I was yellow, sweating, and shaking, and stretched and thin and fainting and waiting for an ambulance, then waiting in the ambulance, then waiting in the hallway then waiting in a bed for nothing to happen. No fluids, though they had put an IV cath in me, they did nothing with it. They ordered a CT of my entire abdomen the next day. Slightly elevated lipase in my blood, a bulky pancreas. Our first positive hit of anything.

The following week was a cascade of understanding, leading to that 18 page document, the one that saved me, and also made me a pariah of a patient.

Normally, I was pretty good with critical thinking. This kind of logic, “If I hadn’t taken that pill that almost killed me and helped us understand what the problem was in the first place, I could take that pill to make myself sick so we can get a good image.” was not an encouraging sign. “We are back to Immogen or Emma.”

I breathed out. “We have two choices: Fast for the blood test, make it through all my classes on Monday, and start Monday night at 8 pm after Philosophy with whatever; it doesn’t matter, does it? Five guys again? Double cheeseburger all the way, fries, and an Oreo milkshake?”

How could I possibly say it that casually when the texture of each aspect of the crispy edges of beef, kissed by cheese and dripping in salt and ketchup, makes me want to fall on the floor and cry? I look down. I’m eating plain rice for dinner. I have put soy sauce, onion powder, and garlic powder on it. To drink, I have a spinach and kale smoothie I’ve just juiced in the extravagant food processor my sister sent me when we figured this out – this is her love language – solving the pain of others through gift-giving. She is amazing at it. She can’t always afford it. I didn’t ask her twice this time.

“Which will certainly make me very sick but won’t necessarily lead to an acute episode. Or,” I continue, coming out of my reverent examination of the hot crispiness of the edges of perfectly double-dipped French fries tossed in salt whilst the sizzling oil clings to their burred edges, “I can get an oral painkiller, and we know that will send me to the hospital. I just need to take it 8 hours before the scan.”

We’ve come full circle. The pill could kill me, but I’m headed to the hospital anyway. If I take the pill, my pancreas will become visibly bulky for the special MRI, and they will see what I’m feeling; I will get a diagnosis, help, be put on a pathway, have a doctor who can help me, guide me, at the very least, I’ll get some digestive enzymes prescribed. I don’t even know which ones I need. If they see nothing, we are done; we are on our own. Still and again.

If, instead, I eat the food, I get to eat food, but I will be incredibly unwell for a month after a three-day binge that is guaranteed to make me ill but not guaranteed to show up on a scan. In other words, it might not make me sick enough. I’ll be in unbearable pain for six to eight days, I will need to go back to clear liquids and weekly IV treatments at 345 pounds per go for a month, and I may do further irreparable damage to my pancreas not to mention our depleted bank account. That couch we couldn’t afford, which came in such a cheery color and was such a friend to me while I was bed-bound? We shouldn’t have bought it. We need the cash now. I had thought the NHS was free after we paid in. But it almost feels like it’s broken on purpose; it’s so broken.

So, the question is: do I do the drugs, or do I do the cheeseburger?

I picture that curled, writing body, sweating and bursting, and septic eight months ago from the tiny dose of Dilaudid. I came so close that time. And a dozen times before. And I’m so far away now. Now, I ride a bike to school, dodging through traffic, I run for the train, I meet my friends at PVs late at night in town, and see their work on the walls of galleries and drink my coconut water while they sip shitty room temperature white wine and laugh and glow.

Nothing. What if I do nothing? I’ve been nearly perfect for eight months, while I have a little pain in my left ribs; if I do nothing, will they see nothing? And will that mean no diagnosis, help, or way back onto the pathway until the next random emergency? And will that mean they won’t put “nil by mouth” on my chart, so when I get that little incidental labrum tear on my shoulder fixed with a quick surgery this winter, finally, will they bring me food I can’t eat and give me oral painkillers?

Food, what if I do food? If I eat food, I will wake the sleeping giant; I will have to relearn the hell I’ve weaned myself off of. Now, I have trained my desire. I can walk through London, sit at a restaurant with Tim, ask him if I can smell his food, and I do. In public. Once.

For my birthday, we go to the theatre, making the credit card distend like my belly, and beforehand, we sit together, and I inhale deeply: a fine cut of fillet, the creamed potatoes, the buttery kale. I smelled it all, drawn in through both wide open nostrils until my chest is full with the delights of each morsel, uncaring how strange this may appear to anyone. I lift my head, eat my rice, and enjoy my still water with lemon while Tim feels guilty about every bite he brings to his mouth. I feel I was learning to love to watch him eat. “Is it good, babe? What does it taste like?” I ask. He doesn’t want to describe it. His eyes are pools of sadness hidden behind the reflections in his glasses. He is mourning, too.

We used to trade dishes halfway through to decide who’d won dinner. But I’m glad I have this, that I’ve got here, that I can go out; I’m sorry it hurts him; I don’t want this to erase food for him as well. There is no path we can see through the navigation of what the loss of food can mean to our relationship. Food brings people together, families together. For the last eight months, I’ve eaten at my studio, Tim has stopped cooking at home, everyone eats ready-meals. I’m worried about their sodium, about their mental health. I realize I used food to tantalize them out of their anxiety and coax them into adventure. Now, they mostly stay home, separately together while I navigate the rough ground of hunger alone.

But if I eat food. Eight months of mental boot camp. Gone in the flash of an eggs benedict, an eggs benedict that won’t kill me. Might not make me sick enough. Might wake the giant, awaken desire, desolation, and despair, might make me want something to ease that despair, something I can’t take by mouth.

It's better to go straight to it, I decide.

“Can you get me some morphine by capsule?” I type out the text. “10 mg should do the trick, I think.” The world is burning around us; everyone is at war, the police are corrupt, the teachers are striking, the doctors can’t hit a vein, and we can’t turn on our heat; who the fuck is going to look at that text? The police are way too busy to worry about me.

“I need it for Tuesday evening, please,” I add. I will wake up at 2:30 am to take her, the little explosion, to drop it like salt on a snail directly into the waiting arms of my pancreas, which will buck and rebel and swell and swagger and howl and then be soothed as they push through the contrast and the tiny bag of saline they will chase it with here. Or the pill will do nothing, as it occasionally does, other than make me feel almost high. Or it will tip me over the edge.

And I will either be admitted to A&E after that, or I won’t.

Tim nods and goes back to his laptop; Wednesday is days away. There is still work to do in Rhode Island.

*I chickened out. I chose Tim’s deep-fried peanut chicken on Tuesday night and George’s eggs benedict on Wednesday morning. Strangely, nothing seemed to happen. I slept in sound bouts on Tuesday night, occasionally waking to wonder if this whole time they’d been right and it’s all in my head. I went in for the MRCP Wednesday afternoon, still feeling pretty ok, and was told I needed to fast for four hours before contrast. This was not on the paperwork anywhere, of course. I went home.

Eight hours after eggs benedict, my stomach is distended like I’m eight months pregnant and the pain is so intense I remember what pain is. I will ride this wave for who knows how long. But now we have a window, an understanding.

New test scheduled for Saturday. I’m headed to Five Guys nine hours before the test. Between now and then - rest, heat, cat, Bosch, withdrawal, coconut water, plain rice, and pain.