In the cemetery where al jolson is buried sparknotes

My Body Politic

A Memoir

SIMI LINTON

THE UNIVERSITY OF MICHIGAN PRESS Ann Arbor

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First paperback edition 2007 Copyright © by Simi Linton 2006 All rights reserved Published in the United States of America by The University of Michigan Press Manufactured in the United States of America

Printed on acid-free paper

2010 5 4 3

No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, or otherwise, without the written permission of the publisher.

A CIP catalog record for this book is available from the British Library.

Library of Congress Cataloging-in-Publication Data

Linton, Simi, 1947– My body politic : a memoir / Simi Linton. p. cm. ISBN-13: 978-0-472-11539-6 (cloth : alk. paper) ISBN-10: 0-472-11539-1 (cloth : alk. paper) 1. Linton, Simi, 1947– 2. Women with disabilities—United States—Biography. 3. Paraplegics—United States—Biography. 4. Traffic accident victims—United States—Biography. I. Title. HV3013.L56A3 2005 362.4'3'092—dc22

2005017907

ISBN-10: 0-472-03236-4 (pbk. : alk. paper) ISBN-13: 978-0-472-03236-5 (pbk. : alk. paper)

ISBN-13: 978-0-472-12128-1 (electronic)

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Acknowledgments

It is for the pleasure of their company that I dedicate this book to the disabled people I know: the ribald, the kind, the uncompromising, the surly, the burly, the invincible . . . the mothers of invention.

And then, with thanks, to: Bob Lescher, my wise and steadfast agent, my very good friend, for all

he has done, for the muffins and for his wonderful stories. The expert Barbara Craig and Carolyn Larson at Lescher and Lescher,

Ltd. Sara Bixler, for unleashing her smarts on this book and strengthening it

immeasurably. The executive editor of all time, the gracious LeAnn Fields, a friend to

books everywhere and, to my great benefit, a friend to mine. The staff at University of Michigan Press, in particular Mary Bisbee-

Beek, Marcia LaBrenz, Rebecca Mostov, and Pete Sickman-Garner. Alvaro Gomez, for the words, and for being, with grace and good

humor, my right and, on alternate days, my left brain. Myrtilda Cissy Tomlinson, for her great care. Everyone who read large and small quantities of these words: Gene

Chelberg, Anne Finger, Rosemarie Garland-Thomson, Cathy Kudlick, Paul Longmore, Corbett O’Toole, Harilyn Rousso, Barbara Waxman- Fiduccia, Florence Weiner, and others.

My darling David, who, despite being confined to a pair of roller skates lo these many years, has managed to triumph over his affliction and lead a serious life. Skate-bound, as it were, he is a credit to his kind and an inspiration to us all.

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Contents

1. Conscripts to the Cavalry

2. Brave New World

3. Coming Out in the West

4. A Special Education

5. Going Away

6. Pleasures and Freedoms

7. The Design of My Life

8. I Sing My Body Electric

9. What I Learned

10. Weddings and Marriages

11. Citizens in Good Standing

12. Lessons from Children

13. Rufus

14. Odyssey of a Sure-footed Man

15. The Cripple Girl & the Blind Boy Go to the Museum

16. Our Body Politics

17. Epilogue

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Conscripts to the Cavalry

On a spring day in 1971, my husband, my best friend, and I set off from Boston, Massachusetts, bound for Washington, D.C. We walked down the street together, we stood together near the entrance to the Mass Pike, and in unison we thrust our thumbs out, looking for the ride that would take us far on this first leg of our journey. We got the ride, and then another, and then another. And with each ride we got closer to Washington. But we never got there, and by the end of the day, my friend Carol was dead and my husband John, the ferociously smart man I’d married much too young, was in a coma he would never wake up from. I lay down the hall from him, tethered to tubes and machines, breathing hard to keep myself alive.

We had been on our way to Washington to protest the war in Vietnam. We had no doubts on that day we set out. This was the demonstration that would end the war, and we would—we must—voice our outrage. While it hurt us to know about the horrors, we lived at a safe distance from danger. Just two years before, John and I had been planning to go to Canada so that he could escape the draft, but then, just weeks before we were to leave, he fell and damaged his knee and his draft status was changed to 4- F, an immediate exemption from service. Carol and I had been training at a local center to be draft counselors, to assist young men who were trying to avoid the draft. We wanted to do something meaningful—something to show that we were not just tie-dye hippies, flashing peace signs to passersby.

We all knew of men who had been killed, and of those who were wounded and wouldn’t ever walk again, or hear again, or breathe properly. But we were safe from that. We could only speak out against the injustice, and so we set off.

Suddenly, this became my story alone to tell. I lost my husband John, a wry wit who rebuked all that was hypocritical and phony. He led a frantic life, and was heard to say openly and with assurance that he knew he wouldn’t live long. He had a nervous energy and a long lean body that caught my eye the first time I saw him. John dropped out of college shortly after I did, and we both had a defiance about us. Neither of us wore it comfortably. Mine was tinged with self-doubt, and his with a brashness

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and a lust for beer that often muddied his righteousness. We were living together and apart. He had loved me and been my friend, but he had hurt me too. He pulled and pushed, wanting too much, or nothing. I loved him too, and pulled and pushed back, and neither of us was wise enough to make it better.

And I lost Carol, an upright oak tree. A woman who made art of everything she did. Her long fingers were constantly weaving, twirling, braiding—threads, rope, string; wherever she was, she would pull from her pocket a small crochet hook and some yarn, and hook and loop, hook and loop, catch and knot, cutting the thread with her teeth, tucking in the ends, sliding it back into her pocket when her turn came up on the supermarket check-out line. On her face, she wore a red birthmark that slipped across her cheek, and gave her a soft glow. I told her many times how beautiful it was, as were her almond-shaped eyes and the long brown hair that flowed to her waist. She lived with a man named Rick, and they were a lively, playful pair. The four of us spent most of our weekends together. Carol and I had met at one of the temp secretarial jobs I took to make ends meet, and we insisted that we all get together. We would tease the guys later on because neither trusted our judgment, and had put off getting together for months. Once we did, we stuck. Rick didn’t go with us to Washington, as he was the only one among us who had a steady job, and he had to work. He would hear when he got home that night how his life had been shattered too.

So Carol and John were lost to us. And John and Carol lost life. I breathed, and breathed, and breathed, and in beds down the corridor from me in a Baltimore hospital they each stopped breathing. Carol that same day, and John, they told me, a few days later. I never saw them. Or, if I did, I don’t remember. I’ve blotted it all out. The crash, the ambulance, the airlift in the helicopter, and the emergency room are locked up somewhere, I hope never to be found. But now, many years later, what I do remember, and want to reconstruct here, is the life I grew into. The new shape and formation of my body were set on that April day; the meaning this new body would have for me took years to know.

For it wasn’t until some time after I sustained the injury to my spine that immobilized my legs, after I learned to use a wheelchair, and after I had reckoned with myself and the world for a while in this new state—it wasn’t until then that I gained the vantage point of the atypical, the out-of- step, the underfooted. It took being turned away from restaurants because they would not provide a table for me and discovering that my local polling place, library, post office, and movie theater were now off-limits to me. I first had to endure strangers coming up to me in public to offer a pat

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on the head and tell me how brave I was and obstinate college professors who thought it was my responsibility to get to classes scheduled in buildings that had no ramps or elevators. Crucially, though, it was banding together with other disabled people for good purpose that taught me what I needed to know for this new life.

The injury was a sudden cataclysmic event, and the paralysis in my legs was instant. Becoming disabled took much longer. I learned along the way how a young woman of privilege, although living at the time as a college dropout and self-fashioned hippie in rented rooms on the outskirts of Boston, could, by the collision of a tinny Volkswagen bus into a cement embankment on Interstate 95, become a marginal citizen, her rights and liberties compromised, and her economic advantage, white skin, and private school education weakened currency in this new world she inhabited. It was, of course, the same world I had always lived in, but when I was a nondisabled person I hadn’t recognized the ways that world had favored me. I had always taken it for granted that if I could go places or get jobs that disabled people couldn’t, it was because I was strong and healthy and they had their deficits and incapacities. While I probably (my memory is fuzzy here) felt sorry for those who “couldn’t,” I saw no agency on the part of those of us who “could.” Certainly not those of us who were concerned about the plight of the unfortunates. We would at least want them to be cared for, housed, and fed.

Once I was pushed over to the other side, shelter and nourishment seemed meager fare for a body and mind that wanted a full life. I had ideas, I yearned to go to college, take a trip, get a job, and live on my own. I was a twenty-three-year-old robust and excitable young woman—ready for more life, not less.

After the accident, I spent almost a year in two different hospitals and a rehabilitation institute. I don’t remember much of the first few weeks. I was in an ICU and heavily sedated. Someone, I think it was a nurse, did tell me that John and Carol had died, but she must have had to tell me several times, because I kept asking for them.

It wasn’t until the third or fourth week that a doctor came to tell me that my legs were paralyzed. It seems strange now that I didn’t realize it. I seem to have been able throughout this ordeal to shut out many things. I must have known it on some level, but kept the thought at bay. I was lying in bed on my back unable to move anything but my left arm, since my right was fractured and in a cast, and I must have thought (if I let the thought in at all) that I was just too weak to move.

The doctor stood over me and delivered his news, not hurriedly, not

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insensitively, but briefly. It seemed he might leave then, but he turned back to me lying there in my bed.

“You know,” he said, “there are many young men coming back from Vietnam in the same situation as you, and I know you’ll find someone really nice to settle down with.”

That woke me up. How absurd this man was. Did he not know my husband had just died; did he not remember why I was there? Did he think this limp woman had lost her convictions? Did he think that I could now simply be matched up with a Vietnam vet, two people with nothing in common but our wounds?

I spoke. “Don’t assume you know what will happen to me, what I might do.”

Would I be able to decide what I would do? I didn’t know; I didn’t know a thing. I didn’t know what “paralyzed” meant. Not for me.

After a month in the Baltimore hospital I was moved by ambulance to New York. There were surgeries to repair broken bones and damaged organs. A shoulder, a thumb, and some ribs had to be set right. The bones that house my spinal cord were pinned in place with metal plugs you can still see on x-rays. In the hospital I lay in bed being fed, ministered to, coddled, and soothed by my mother and my sister, and by a stream of nurses, slipping in and out of my room. My mother made me chicken soup and brought flowered pillowcases to rest my head on. She was with me all the time. In between the quiet moments were the surgeries, the painkillers, the nightmares. Snarling tigers and rabid beasts attacked me in my dreams, and I was their captive, penned in by the metal bars of my narrow hospital bed.

My doctor promised me that once I got to the rehab center I could get out of bed. We both knew that meant into a wheelchair. He’d said it before, I knew it, but he didn’t repeat it each time, and I didn’t think too much about it. Everything was very immediate—whether I hurt or not, who was in the room, how scared I was at night, and also my family and friends who surrounded me, feeding and distracting me. It must have been hard for them not to talk about the past, about John or Carol, nor talk at all about the future, a future none of us could quite imagine.

They did everything for me, and doctors and nurses did everything to me. I was exempt from my responsibilities as friend and sister, daughter and cousin. I didn’t call people; they called me, and someone held the phone to my ear so I could talk with them. I didn’t visit them; they visited me. I didn’t bring them birthday presents or run errands for them; they did that and more for me. They were generous and steadfast. My sister, Chick,

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went to John’s funeral in Lexington, Massachusetts, and absorbed for me the shock and the sorrow of our Boston friends and family.

Months passed, and I was transferred to a rehab center in New York City. The first day there, in a room not much different from the one in the hospital, in another bed with metal side bars, I was visited by a group of other patients. They came into my room, five or six young women and men, all in wheelchairs, waving and smiling, introducing themselves, offering to show me around. “When will you get your chair?” someone asked, like it was something I should want.

They soon left, talking loud, kidding around. Two guys tried to push their chairs out the door at the same time so they crashed into each other. “Fuck you,” said one. “No, fuck you,” said the other. I understood it as performance for my benefit, and I was flattered. I was left alone, wanting to be part of the group, wanting to move. Wanting to be like them.

I lay there in bed, on my side where the nurse had positioned me, with pillows tucked behind my back to keep me in place. I felt so helpless. The call button to summon the nurse was there, just a few inches from my hand, but I could think of nothing to ask for. I scanned the vacant room. I had three roommates, but they were all out of bed, down the hall somewhere, doing their scheduled activities. A clear plastic cup with urine sat on my nightstand, taken from the long tube inserted in my bladder. I jiggled the cup and watched the little white bits float up and down in the yellow liquid. Had it been just weeks before that I had been splayed out on my living room floor in Cambridge, tripping on LSD, entranced by the oily purple globules rising and falling in my lava lamp?

And had it been just a couple of years before that when I stood tall on the roof of my apartment building in the East Village, with the New York City skyline rising up behind me? Dressed in John’s black V-neck sweater and a pair of tattered jeans, I was having my picture taken for an underground newspaper, the East Village Other. I would be the centerfold for the next issue, with a bold caption over my head: SLUM GODDESS.

Now, I was a slight, horizontal body draped in a loose white hospital gown. It opened in the back so if a doctor or nurse approached my bed, I would be available for their examinations and ministrations. I was more at home on the sooty roof than on my antiseptic hospital pallet. I was clothed then, costumed as an ethereal symbol of the counterculture. I stood in profile, with my face tilted upward, and my long wavy hair blowing out behind me.

My hair had been chopped off by a nurse in the emergency room and was slowly growing back. It was just long enough to comb behind my ears and fold into a little wave on top. The harsh fluorescent lights in my room

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sapped all tone and nuance from the atmosphere. There was nothing ethereal about me now. I had become an assemblage of body parts, notable only if they worked or not.

I got the wheelchair, but it took me a while to catch up to the others. Even sitting up in it made me dizzy. I had not been out of bed since the accident and weighed under ninety pounds. I hadn’t used my arms for anything more strenuous than scratching. Slowly I began to gain strength, move around a bit, and eat. Thick milkshakes, bread and butter, mashed potatoes. I had the wild cravings of a pregnant woman. I’d wake up thinking about jelly donuts, and couldn’t rest till I had one. Sitting up at a table to eat was an amazingly pleasing activity. Whatever I hungered for, my sister appeared with shopping bags filled with it: rich, smelly cheeses, olives, peanut butter sandwiches, apricot nectar, or a packet of vegetables and brown rice she had cooked on her stove, wrapped up in tin foil, and transported to the hospital at breakneck speed so it arrived still warm. And she acted as if this were a natural act, not heroic, not to be fussed over.

Treats were shared with my roommates. We ordered Chinese food at odd hours. Greasy egg rolls for everyone. We made each event as festive as possible. We were in a sorry place. Gray and alien. And there was nowhere to hide. We were thrown in together and exposed in all that was messy about our lives at that time. Our piss and our shit, our tears and our awkward visits with people who didn’t know how to talk to us. The flimsy curtains that surrounded our beds hid little, but nurses and aides would appear at any time, day or night, and fling them open or snap them shut in order to do things to us: adjust our position, take blood from our arms, ask out loud to all around—including the aunts and uncles, boyfriends, and such clustered around each bed—if we’d had a bowel movement that day. Most of the nurses and aides were champions. They were sensitive and caring, and knew just what we needed. But there were others who were peculiar, self-involved, or sometimes downright hostile, and they had us in their grip.

I went to physical therapy every day. I lifted, stretched, pulled. I hurt. My legs were stock-still, and my feet in red sneakers perched on the footrests of my wheelchair, but the rest of my body kept moving, working hard to get us around. I’d never had very strong arms, but now these were becoming the most robust parts of my skinny little body.

The most difficult task was to learn how to move my whole body as a unit. The top half acted automatically, performing as it had for twenty- three years, but I had to consciously take charge of the lower half. Not only did it not move of its own volition, but the sensations below my waist

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were radically different from those I’d felt before. At the very beginning, when I was first injured, my legs felt numb, like when you get Novocain at the dentist. I couldn’t feel if anyone touched me, nor could I sense where my legs or feet were unless I looked down and made an assessment of their position. But, over time, that changed. Feeling returned in my pelvis and genitals, and in other spots like my knees, my thighs, and the bottoms of my feet. The sensations that I feel in the lower half of my body, and there are many, are familiar to me now. The precise and specific sensations above the level of my injury meld into the more diffuse and varying feelings below, but they are all part of me. There is no longer a clear line of demarcation between these zones. There is a gradual change along the length of my body. Although my toes can’t always tell the difference between hard and soft, rough and smooth, they alert me when they have encountered an object, and they tingle inside and tell me where they are. While initially I had to find my legs with my eyes, I can now reach down with my arm, hook it under my knees, and reposition my legs with as little conscious thought as it takes to reach out my hand and pick up a pencil on my desk.

Learning all of this and gaining strength took a long time. In the current managed-care climate, people with similar injuries are shuttled out of the hospital, into rehab, and then out the door as soon as they are medically stable, sometimes just three weeks post-trauma. In 1971, people stayed in the hospital and then in rehab for months, gradually getting stronger, learning to do the familiar in a strange new way. I was in the hospital for four months and then six months in rehab. Day after day, the physical therapists and the aides worked us hard. They were relentless; little fazed them. Their job was to get us strong and keep us moving forward. If someone got tired, or angry, or depressed, the solution was more exercise. But if you were really hurting, they would circle around you and help you out.

Much of the day was filled with stupid activities that I had little patience for, like learning to make a cake from a packaged mix in the occupational therapy room, or the meetings they scheduled for me with a staff psychologist. Most of the time, I wouldn’t talk to him. I didn’t show up for the appointments, or I would stop by and give him a report of my activities with few embellishments. He was a soft, mild-mannered man, and did seem concerned. Yet his tailored slacks and sports jacket and slicked-back hair showed him to be “straight,” and certainly over thirty. I feared he might talk me out of myself.

I had only vestiges of my life with me in that place: a big brown suede pocketbook with floor-length fringe I had on the trip to Washington,

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emptied now and folded into a drawer in my nightstand, and a beaded headband I put on every day. The clothes I wore were loose pants and t- shirts my mother bought in a hurry at Macy’s. They were not what I would have chosen, but I could not go to Macy’s to choose them. So what I was left with were the few decisions I could make in a day: whom to talk to, what flavor ice cream to eat, whom to trust. Small as I was in that hospital- issue clunky metal wheelchair and my baggy clothes, I said yes and no to things.

I remember one day the psychologist sought me out to report the results of an IQ test he’d administered the week before. He seemed excited with his news that I was quite smart. I had scored even higher on the test than he thought I would, he told me, and I quickly discovered that the more casual I acted and the more disinterested I seemed, the more insistent he became that I take this seriously.

The man earned his pay that day by patiently listening to me rant about his simplistic, meaningless, rote tests, which did nothing but affix a number to people, taking all that they are and shrinking it down to bits and pieces. Indeed, he may have been very talented and allowed me the adolescent thrill of getting a rise out of an adult, and the opportunity to vent my anger at him for making me think about my future. Maybe, somewhere in my response, he could see my first try at the kind of opinion-rendering I would one day get paid for.

I didn’t puff myself up like that often. Mostly, I think I was nice to people. It was a humbling experience being there. All these people in pain and needing so much, and most of the staff were decent people doing a hard job.

I often brushed off people’s kindness to me, showing an upbeat face, saying I was fine today, no need to worry. But not always. My friend Kevin found me once huddled in a vestibule outside the urologist’s office, crying. A few weeks before, they had taken out my indwelling catheter, and I was trying so hard to keep from peeing all over myself, but I couldn’t hold back and there I was again, wet and sad. “Kevin,” I sobbed, “he told me that maybe it would get better, but if not I could wear a pad when I went out. He said that it wasn’t so bad, people did that. But it is bad,” I said, “it’s terrible. I can’t do that.”

Kevin said, “Yeah,” and pointed to the bulge in his pants leg where, as we both knew, there was a tube coming out of his penis, running down his leg, into a bag strapped to his ankle. But it was Kevin’s turn to comfort me, and he did, and before long we were laughing at how much beer he’d drunk the night before to make his bag so fat.

Another day I hung around the nurses’ station waiting to talk to one of

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the nurses I liked. I didn’t want to approach her, or make a big deal of it, like there was really something the matter, so I just waited till she was alone there and I could casually pull my chair up to hers. I asked how her day was going.

Then I said, “You know that salesman who you order equipment from? Yeah, well, he came to my room last night and said he had to measure me for a back brace. It was late,” I said, “so it was weird. The room was pretty dark, there was no one around, and he sat on my bed, and every time he reached down to measure my waist, or the length of my back, he rubbed my breast.”

She said that it was hard to do that measurement without touching me, maybe it just seemed like he was rubbing my breast.

“No,” I said, my voice getting louder, “it was wrong. What he did was wrong. When I tried to stop him, he got annoyed and told me to hold my hands over my head.”

I found the courage to name him. “He’s a creep,” I said. “Please don’t let him near me.” I began to cry.

She took my hand. “Don’t worry,” she said. “I’ll make sure that won’t happen again.”

He never came into my room again, but I saw him move easily about, visiting other patients on the floor.

I stopped going to the sessions with the psychologist, but physical therapy made sense, and I did everything they told me to do. As I got stronger and learned how to use my chair, I wanted to get out of my room, to go somewhere—anywhere. I teamed up with the group that had visited me that first day, and we would barrel down the hall, get on the elevator, go to the snack bar, sit out in front of the hospital, do anything for privacy, fresh air, space, and just to move. Our favorite spot was the roof, which in the summer and fall months when I was there was often hot and dirty, but it got us out of the stifling rooms and corridors where you smelled medicine, heard groans, and saw nothing that wasn’t starkly white or hospital green.

We snuck bottles of scotch up to the roof, and some of us smoked reefer. We had a couple of portable radios and were always fighting over which stations to listen to. Here was a group of women and men who were anywhere from seventeen to around thirty-five. We had landed in this place with little in common—a college student who smacked up his sports car on spring break, a country boy thrown from his horse, a construction worker who toppled off a high rigging, a young woman who fell off the back of a motorcycle, and me, a college dropout, a young widow, kind of drifting, kind of working, kind of OK, sideswiped on her way to an anti-

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war demonstration. The scotch drinkers and the pot smokers tolerated each other’s habits.

In the days before the hospital I remembered that these groups had been divided along party lines, but here we had to mingle, there was only one party for us.

The songs “American Pie” and “Bridge Over Troubled Water” were big hits that summer. Whenever the first came on the radio we’d sing along, driving our Chevy to the levee. Screeching at the top of our lungs, we were a group of caterwauling bruised creatures, eager to cut loose with our voices, our bodies tied down by our impairments, and held captive in this institution. Yet when we heard the first plaintive strains of “Bridge Over Troubled Water,” we’d get quiet and sad. Even late at night, with everyone in bed, if the song came on, someone would turn the volume way up and each of us in our rooms up and down the hall would hear Simon and Garfunkel reassure us.

If you need a friend I’m sailing right behind. Like a bridge over troubled water I will ease your mind.

Up on the roof, after visiting hours, when all our friends and families, girlfriends and boyfriends had gone home, when our loneliness and isolation were at a peak, we huddled together and talked about sex. Most of us had sustained spinal cord injuries to our necks or backs, others had brain injuries. All of us were radically altered in the way we moved, felt our bodies, responded to sexual stimulation. How did we know this? This group of relative strangers, women and men, adolescents, married people, probably both gay and straight people (though no one said that they were gay), we shared our stories—our attempts at masturbation, our furtive fondling with girlfriends and boyfriends up here on this same roof, our few private moments at home when we had the precious weekend passes that got us out of the institution. Our bodies had changed, our lives had changed. Some had partners who wanted them to be the “way they were before,” some didn’t know how their partners felt and were afraid to ask, and some of us, like me, were alone, not knowing how we would meet anyone now. What was clear and uniform across the group was that we had strong desire. We felt lust in our hearts, and our bodies tingled and stretched out toward sex, toward pleasure.

Like the young adolescents we had only recently been, we didn’t know what to do with all the pent-up feelings. Here we were, swept into this