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Overview
At first, Hofmann faced her mortality alone, shamed by a disease society considered the exclusive property of gay men, injection drug users and sex workers. Burdened by her secret, she withdrew from the world she once knew. Over time, though, Hofmann began to accept her mortality -- and HIV -- and reconsidered the way she wanted to live her life. After nearly a decade of silence, Hofmann did what she never imagined having the courage to do: she came out to the world about what she was going through.
Regan Hofmann not only has the courage to fight HIV and the debilitating stigma that surrounds it, but she writes about her experience with unflinching honesty and a deep affection for the family and friends who support her. I Have Something to Tell You is a memoir of disease and survival, and an inspiring account of a life driven by a sense of purpose and a search for love in the face of the unthinkable. More than anything, it is a story that reminds us that while life can change in an instant, we each hold the power to decide how we use the time we have. With humor, vitality and an unquenchable passion, Regan shows us a life fully lived.
Product Details
| ISBN-13: | 9781439109649 |
|---|---|
| Publisher: | Atria Books |
| Publication date: | 09/22/2009 |
| Sold by: | SIMON & SCHUSTER |
| Format: | eBook |
| Pages: | 304 |
| File size: | 2 MB |
About the Author
Read an Excerpt
I spent the last carefree moments of my life swimming with dolphins. My mom had sponsored dolphins on behalf of both my younger sister Tracy and me, and given them to us as Christmas presents. We unwrapped flat boxes containing pictures of the smiling, slate-colored marine mammals and stared, bewildered, until my mom pointed out that there was something beneath the photos—a plane ticket. The other part of her gift was to take the three of us to Florida to see the bottle-nosed creatures in person. Our dolphins lived at a sanctuary that allowed people to visit; their survival depended, in part, on the generosity of people like my mom. I loved the idea of having my own dolphin.
Ever since I was a small child, I have been obsessed with animals. My mom and I have spent a fortune on food and vet care for feral and misplaced cats, dogs, ewes, hawks, raccoons and horses who rarely understood the help we provided—as a result, we often got bitten, scratched, pecked or kicked while trying to save their lives. We’ve learned that it is safer to fulfill our urge to rescue animals by financially supporting wildlife from afar and letting the pros handle things. There is a manatee and a timber wolf living the high life somewhere thanks to my hard-earned dollar. But, God help me if a wounded, dazed raccoon stumbles down the road in front of my car. I’m putting on the oven mitts I carry in my trunk (especially for situations like that) and I’m going to get my furry friend into a box (also always in my car, just in case) and I’m going to take him to the wildlife center, rabies be damned.
One time, I collected a vulture with a broken wing. He lay quietly on a blanket on my back seat, until a squirrel ran out in front of me. I jammed on the brakes and the vulture tried to keep his balance by flapping his good wing—a move that somehow tossed him into the passenger seat. A guy in a pickup truck next to me at a red light looked at my winged copilot with his mouth agape. I guess I did look a little crazy with the giant, black, flesh-eating bird sitting quietly beside me, but I don’t discriminate when it comes to the kinds of things I will try to save. Worms, bugs, bats, rats, snakes, weasels and raptors all deserve to live, too. After all, a rat is just a squirrel with no fur on its tail. Whether one is cute and the other is vermin depends entirely on how you look at things.
Several months after our dolphins were given to us, my mom, sister and I found ourselves on different planes, my mom from New Jersey, Tracy from Washington, DC, and me from Atlanta, traveling to a land of sunlight and sand to see them.
We met at the Miami airport in a flurry of giddy hugs and collected our rental car. My mother careened with uncharacteristic speed out of the airport piloting the Dodge Intrepid over an endless series of little bridges linking the archipelago in the Gulf Stream toward Grassy Key—home of the Dolphin Research Center.
We hurtled between wide swaths of blue sea, over hump after hump of paved arches as if we were tracing the outline of the back of a Brachiosaurus. The name of our car—the Intrepid—perfectly characterized our journey. None of us was sure where we were going next in our lives, but we were going there full throttle. My sister, who was then twenty-six, was dating her husband-tobe Josh and studying law in DC. I was twenty-eight, working as a freelance writer and recovering from a heartbreaking divorce. Andrew—my dashingly handsome, sweet first husband—and I had split up a mere eleven months after getting married in the spring of 1994. During our marriage, weekend after weekend, we woke up on Saturday mornings wanting to do profoundly different things. Andrew wanted to play golf and have me wait for him in a crisply pleated tennis skirt at the country club’s “nineteenth hole;” I wanted to search the woods in camouflage pants, looking for animal bones, antlers, turtle shells, feathers and nests to add to my collection of natural curiosities that I’d started years ago.
As a child I spied a bleached cow skull at the edge of the woods while riding around a golf course in the cart with my dad. We’d picked it up, and my dad, who painted as a hobby to unwind from days of working as a CEO, placed it on the kitchen table and spent weeks integrating its form into his various water-color landscapes. Bones had always been things of beauty to me; to Andrew, they were dirty and strange.
Sadly, Andrew and I didn’t realize we were irreconcilably different until we were already married. He wanted me to make the homemade breakfasts he’d never had as a child; I never cooked, preferring stacks of syrup-slathered silver dollar pancakes at IHOP. I would talk endlessly and loudly about my feelings; he would listen, saying little in response. Not that you could ever reduce three years of love to pancakes and how we expressed ourselves, but these things pointed to fundamentally different ways that we moved through the world, ways that would not allow us to do that side by side unless one of us changed who we were. And we both liked who we were. We just hadn’t known ourselves, or been able to express who we were clearly enough to the other before we decided to spend the rest of our lives together. We parted brokenheartedly as friends.
As my mom, Tracy and I hurtled that day through the Keys, I was still reeling from the double shock of marrying such a seemingly perfect man who was so perfectly wrong for me and the notion that I was starting my whole life over at twenty-eight—so soon after I thought I’d figured it all out.
I briefly dated one man, Antonio, post-divorce, but had called off our relationship just months after it began when it was clear that I was unready to give my heart to someone new.
My mother was married to a man named Frank, whom she married the same year Andrew and I did, two years after her divorce from my father. My parents, who had been married twenty-seven years, split up when I was twenty-five. Subconsciously, I thought that my marriage to Andrew might help bring everyone back together. Little did I know that the fabric of even the most tightly knit families runs the risk of being torn to shreds by the stress and the expense of orchestrating a black-tie wedding for hundreds of people. And that when a marriage is over, the canned happiness of a party will never glue it back together.
My mom, my sister and I had all recently made choices that changed our lives forever, and we were still in that stage between making those choices and finding out whether or not they were the right ones. And so, we were filled with a certain lightness—amplified by being three grown women on the loose for a long weekend with nothing to do but sit in the sun, eat, drink rum, talk and play with dolphins.
My mother had uncharacteristically tied her shoulder-length dark brown hair back in a loose ponytail with a scarf. Normally, it fell about her shoulders in soft chocolate curls. I wondered if she’d left her hot rollers behind. I hoped so. I had almost never seen my mother’s thick, dark wavy hair uncurled. As a young girl, I used to love going in to kiss her good night after she’d emerged from the shower, fresh and warm, wrapped always in a bathrobe that felt like a stuffed animal. She would twist her wet hair into a Carmen-Miranda-esque pile of terry cloth on her head, the weight of which pulled the corners of her eyes up exotically. By the next morning, her dark mane was inevitably blown dry and curled. She rarely went out in public without looking like a movie star. Not that she had to try to look like one. Because of her beautiful bone structure and thick cascade of hair, a quick swipe of her frosted coral lipstick was all she needed to look glamorous. It seemed a promising forecast of fun for our Florida girls’ weekend that my mom had let down her hair.
As we sped southward down the highway, I noticed that Tracy, who is two and a half years younger than I am but whose elegant and stoic queen-mother-like disposition makes everyone think she’s older, also seemed atypically relaxed. She wore a scoop-necked tank top, which exposed more of the delicate winter-white skin of her dÉcolletage than she typically allowed. I worried that the sun would make mincemeat of her skin, but knowing her, she’d already slathered herself in SPF 40s—just in case a ray of sun crawled in through the tinted glass of the car.
I’d made a mixed tape for our journey with a little Johnny Cash, some Elvis and a lot of Grateful Dead. As we drove, I stuck my hand out the window and let the wind slide hot and dry down the underside of my arm into my loose sundress. I kicked off my shoes and pulled the ponytail holder from my shoulder-length blond hair; the breeze blew away the stress of a long winter. My mom turned the radio up and we all belted out “Good Lovin’ ” at the top of our out-of tune voices. Laughing at how awful we sounded, I was reminded of my grandfather saying, “If all the birds in the forest with bad voices stopped singing the woods would be a very quiet place.” There was something to that; together, we sounded fine.
After nearly two hours of driving and a stop at the Shell Man (where I added to my collection of natural curios with the purchase of a red Bahamian starfish, curls of conchs that replayed the ocean’s pounding roar in my ear and a giant nautilus polished shiny by the tumbling waves—ironically, the symbol of eternal life), we arrived at the Dolphin Research Center ready, as their website suggested, to “get wet with a dolphin.”
The center had rehabilitated the original Flipper (the inspiration for the movie), who’d famously gotten stuck in a fisherman’s net, and befriended the man who saved him. Since then, the center has rescued, studied and advocated on behalf of all species of marine mammals. Its work was instrumental in stopping the slaughter of whales.
I was highly skeptical that I’d meet my actual dolphin (would I be able to recognize her from her picture, anyway?) but the trainers at the Dolphin Research Center promised us that we would be personally thanked by our dolphins for my mother’s generous donation. After registering, we went to our rooms and eventually reemerged—dressed in bathing suits and pareos, ready for orientation. In a classroom made of several wooden benches under a thatched roof, we listened to a sun-cured man in a big-brimmed hat and a zinc-oxided nose describe the history of dolphin rescue and research.
He told us how, when the hurricanes came, the staff lowered the underwater chain-link fences that formed the dolphins’ paddocks so they could swim to safety in the open ocean. He said the dolphins almost always came back. I felt much better knowing that the dolphins my mom was supporting were semiwild. I would not want her to endow dolphins kept in chlorined captivity in touristy resorts forced to swim with screaming children or get no fish for dinner. The rule at the DRC was that it was up to the dolphin, not the guest, whether or not there would be swimming that day.
Using a large plastic facsimile of a male dolphin, the trainer showed us where it was safe to stroke the dolphin and where it was ill advised to do so; the swipe of a human hand on the wrong part of the dolphin’s anatomy could arouse an affection that could be deadly. We nodded solemnly and promised to keep our hands above the water.
Anyone who doubts the intelligence of dolphins needs only to see the complexity of their call signs to understand their brain-power. The trainers summon the dolphins to the surface with large, white, intricate symbols made out of wood, fastened to the end of long poles they dip into the water. As my mom, Tracy and I stood breathlessly on the AstroTurf–covered dock in our bathing suits, a trainer lowered one of the giant swizzle sticks into the water and waved it about—nothing. He waited a bit and then, switching sticks, plunged another under the surface of the lagoon. Suddenly, I saw the dark blur of a dolphin twenty feet away. He jetted for the surface and erupted with a comical grin on his face, landing on his back in the wake of his own splash, chattering his triangular teeth, begging for fish.
We applauded. I have no idea why, but I clapped my hands together like a small child at the sight of this magnificent creature who stared back at us with curiosity and penetrating intelligence. There is something unnerving about looking into the eyes of a beast so attuned to nature’s subtleties that it can sense a hurricane hours before the most sophisticated technology can detect the same atmospheric disturbance.
One by one, we slid into the sea to play with the dolphins. At the trainer’s suggestion, I twirled around while treading water, splashing my hands on the gray-green lagoon. On the trainer’s command, the dolphin attempted to copy me. He stood up on his tail and spun in circles, smacking the water with his fins.
The dolphins can sense things we can’t. If you’re scared, they swim slowly. If you’re brave, they speed up. They refused to pull one young woman, trying repeatedly to take her back to shore. The dolphin trainer asked if she was sick. She said no. The next day, she shared with us what the dolphins had perceived—that she was newly pregnant.
When it was my turn for my favorite game, the “dorsal pull,” I swam out to the middle of the lagoon and spread my arms. I felt the pair of 500-pound dolphins beneath me, stirring the water with their massive bodies, which move as a single muscle. As they rose from the deep in tandem, I grabbed hold of their dorsal fins tightly; they pulled me across the water with an exhilarating jerk. I let my legs go limp; don’t try to swim, the instructor had said. Just go with their flow. They circled around and around, taking me farther out than they had the others. I laughed out loud, my mouth filling with foamy seawater. They seemed to know I was having the time of my life. Maybe they knew that it was the last time I would ever feel this free.
I first discovered the lump while I was waiting on the dock for my second turn to swim. I dropped my arm to swat a sand fly on my thigh and the inside of my wrist brushed against a bump the size of half a golf ball nestled in the groove where my leg met my body. I pressed on it. It didn’t hurt. It was just unsightly. I looked over my shoulder for Tracy, wanting to show it to her, but she was out in the water, being swept up by the dolphins. When she returned to the dock, I showed the bump to her and my mom; neither of them seemed alarmed.
The thought that something was threatening my life never occurred to me. For the rest of the weekend, my mom and Tracy and I played with the dolphins, flew across the glassy surface of the lagoon on wave runners and added rum floaters to our piÑa coladas at dinner, singing along with the acoustic guitarist who serenaded us at the water’s edge as the sun sank into the sea.
When it was time to go, we vowed to make a yearly ritual of our pilgrimage.
When I got home to Atlanta, the lump in my groin still hadn’t gone away, so I went to my doctor and showed it to him. He seemed as unconcerned as my mom and sister. He said it could be mono, or cat scratch disease, and proposed a litany of tests, including one for HIV just to be safe; I barely paid attention when I signed the waiver for the HIV test. I’d been tested throughout my life and didn’t think there was any way I could have been exposed to the virus.
Even when they called me a week later to say that the results of my blood work were inconclusive and that I’d need to come back in to have more blood drawn I wasn’t worried. On the phone, the nurse explained they needed to do some follow-up test, but that she didn’t know why.
At the doctor’s I sat in an exam room, patiently reading. After twenty minutes, a nurse came in, told me my doctor was running late and asked, “Do you mind waiting in the doctor’s private office? We need this room to examine another patient.”
That should have been my first clue that something was awry. Why not just send me back to the waiting room? But thinking I had no reason for concern, I said, “No problem,” and followed her down the hallway to my doctor’s office. The nurse opened the door and offered me a seat in a big, black, leather La-Z-Boy recliner in front of an oversized TV.
“Can I get you something to drink?” she offered.
If I’d known what was coming, I would have asked for tequila. Instead, I asked for a Diet Coke.
“So, this is what my doctor does while I’m waiting for him, endlessly, ” I joked, pointing at the humongous TV set. She smiled professionally and showed me how to use the control wand to adjust the angle of the chair and to turn on the different massage modes.
There was a moment when it seemed a little strange—me, wiggling away in this huge recliner, watching The Jerry Springer Show in my doctor’s private space—but I quelled the instinct to listen to the sudden small ache deep in my stomach. Had I been a dolphin, feral and free, I would have left the scene that was about to unfold. But as a human trained to ignore nature’s most obvious signs, I just sat there, relaxed. Any subconscious knowledge I might have had that something was wrong was overridden by the perpetual optimism that was, until then, part of my emotional composition.
I’d been carefully conditioned to think that if I followed the laws of society, I’d be protected—except from the things that no one could ever be protected from, like serial killers, errant asteroids and plagues. The illusion of control had been drilled into me at places like the Barclay ballroom dance classes in my hometown of Princeton, where at the age of thirteen, I first clutched the hands of young men through the safety of white cotton gloves; the freezing chop of the Connecticut River at dawn, where I stroked the eight-woman varsity crew for Trinity College; and the sand arena of my British, Olympian riding coach, Carol. As long as I did the right thing, my instructors taught me, I would be safe.
I moved the chair around, watching the emotionally torn-up people on Jerry Springer swing wildly at each other as plainclothes policemen tried to restrain them. I was astonished that people could hurt badly enough to be oblivious to humiliating themselves on national television.
I wish I could say I was reprimanding myself for watching the misfortune of others, when the door banged opened and a squadron of people in white lab coats walked into the room. But the truth is, I was thinking how glad I was to have been born and raised in a world far, far away from that of Jerry Springer’s guests. And then, suddenly, I wasn’t merely watching other people’s lives fall apart on daytime television; I was smack dab in the middle of my own Jerry Springer moment.
I knew from the doctors’ faces, and their number, that whatever it was, it was bad. Had I contracted some rare tropical disease from the dolphins? Was the man on the far left, who was not my doctor, from the government? Were they going to quarantine me? Would I get to make some phone calls? I started to feel as if I were in a sci-fi movie. I thought about those films where people get sucked unwillingly into medical experiments and awaken in water-filled tanks with strange plugs in their bodies.
My doctor coughed nervously and one of the nurses switched a file folder that was clamped beneath one elbow to the other. As she whisked the folder across her body, a giant gold liquid-filled syringe fell out. It stuck in the carpet, swaying back and forth on its point—like a sinister metronome, counting away the last seconds of my innocence.
As soon as I saw the syringe, I knew something terrible was about to happen.
“Whatever it is, ” I said to the group dressed forebodingly in white in front of me, “however bad it is, please do not stick that in me.”
The needle was long enough to penetrate through clothes, fat and muscle, deep inside a body where the sedative would work immediately. It was strong enough not to break during the thrashing of a disturbed soul.
No one looked at me while the doctor told me the news. He turned off the TV, cleared his throat and said, “I don’t know how to tell you this, so I’m just going to tell you. Your blood work shows that you are HIV-positive. I am so sorry.”
I took several half breaths. “I don’t have cat scratch disease?” I asked, frantically hoping he would say, “Oh, did I say HIV? I meant cat scratch disease.”
“No, I’m afraid not, ” he said gently, his tired eyes searching my face.
“Turn it off. Please, turn this chair off, ” I said, fumbling with the control wand, trying to get the chair to stop vibrating. So this is why they brought me in here: to relax me before telling me the news. A nurse came over and pressed a button on the control wand and the shaking stopped.
How long, I wondered, is long enough to jiggle before you’re relaxed enough to be told you’re dying? Twenty minutes? An hour? A day? The rest of your life, what’s left of it? Is a gentle lower lumbar massage really going to calm your pounding heart so that it does not splinter your ribs? I looked at them looking at me; we were all speechless. I knew a new kind of quiet—one caused by a silence that falls when there is only one person in the room who should speak and that person can’t say a word. I couldn’t even grunt. The weight of all the unuttered answers to the questions ricocheting around my head intensified the silence.
It just couldn’t be. I’d been so careful. Prudish, even. I’d never used IV drugs and I’d almost always used a condom. My mind spun over the faces of my past partners—but I’d been fine and they’d been fine and were all healthy and I was healthy except for this virus now. It was so strange: I looked perfectly okay, felt perfectly okay, and yet was in the midst of a life-or-death battle with a virus that would soon wither me like a plant with no roots.
I couldn’t move. My body felt two-dimensional. I closed my eyes. The three letters floated around on the black insides of my closed eyelids, swirling, connecting, disconnecting and reconnecting in various triumvirates—VIH, IVH, HVI, HIV—like a maniacal bowl of Alpha-Bits cereal.
My mind exploded in every direction: great and unbearable fear at the notion of a slow, humiliating, painful death; grief so penetrating it felt like the air had been let out of my soul; ecstasy that I was free of everything I never wanted to do; the feeling that all was very, very wrong inside of me and a weird certainty that I wasn’t going to die from this.
“Turn it back on, ” I said. “Please, turn the chair on.”
The nurse came bumbling toward me again.
“Here, ” I said, handing her the control. She stabbed at the buttons with her square-tipped, ruby-colored nails, happy to have something else to concentrate on besides my face. I wasn’t crying. Didn’t look scared. Wasn’t angry. Because I was in lobotomizing shock. The kind I imagine passengers experience when the airline captain comes on the PA system and says, “That’s it, folks. I’m sorry. There’s nothing else I can do. God bless and keep you. Over and out.” I’ve always liked to believe that when you really know something unspeakably horrible is about to happen, your mind saves itself, shutting down to avoid having to register what it knows is coming.
Maybe they were wrong. Maybe there had been a mistake. Perhaps I was going to make history as the first person diagnosed with HIV for whom both vials of blood had been accidentally switched in the lab. They had to be wrong. People don’t die from disease at twenty-eight. People who are in their late twenties die in a flash, a crash, an OD, a shot. They don’t have time to think about it. No one faces death on a day when cream-white clouds swirl in the blue tea of the sky. Death comes on dark nights, the wind undressing the trees, howling in complaint of their bony nakedness. It comes to people left alone in a pool of bodily fluid on the roof of an abandoned parking garage, or in a bed after months of prolonged, body-withering sickness, or in an explosion of light and glass and metal and sound. People don’t die on beautiful days when the promise of a party brightens the drudgery of a work day, drawing the neighbors together to share cheer, the ice in their crystal tumblers tinkling like tiny bells.
My neighbor’s party. Can you imagine their faces when I called? “Hi, listen, it’s Regan. I was just diagnosed as terminally ill this afternoon and I don’t think I’ll be able to join you after all. I hope you understand. Would you like me to drop off the brownies anyway?” It seemed unthinkable that death could intrude so rudely and prematurely into my nicely planned life.
I looked at the doctor, and asked, “How long? How long do I have to live?”
“I don’t know, ” he said. “A year. Maybe two. HIV progresses much more quickly in women. Unless you can identify when you might have gotten it, it’s hard to guess.”
“One year!? How will you know if it’s one year or two?” I asked desperately.
“We’ll test you again soon. We’ll also see how your viral load changes over time.”
“What about kids?” I asked in a tiny, breathless voice.
“No, ” the doctor said.
“Sex?” I whispered.
“Probably not a good idea, ” he said.
As if anyone would ever want to get near me now.
The nurses flanking the doctor looked like altar boys: dressed in white, standing at rapt attention, well rehearsed in the proceedings, waiting patiently for their cue to act. I wondered if they were religious, and if so, if they were praying for me.
“How are you doing?” the nurse asked. She pointed to the syringe still stuck in the carpet. It had stopped swaying. Time was up. “You want some help? I could just give you a little bit. It might make things … easier, ” she said.
“No, ” I blurted out. I wanted my head clear to think.
I was going to die, sexless for the rest of my life, without the ability to leave behind a legacy in the form of a child. Not only was I going to have to tell my mother, father and sister that they would lose their daughter and sister, I couldn’t even give them a part of me to hold on to after I was gone.
The reality that I had HIV moved slowly through my mind. The idea was as easily digestible as a large chunk of metal. It just couldn’t be. What about all my friends who’d been so much wilder? They were okay. Why wasn’t I? All that sex I’d not had for the sake of good health and propriety and self-respect and this was what I had to show for it? A deadly STD?
My mind wheeled like a kite in a crosswind. Who had done this to me? I thought about my past boyfriends. Andrew, my ex-husband. Antonio, my most recent ex-boyfriend. We had broken up several months ago; how was I going to tell him? I worried about everything at once: that he gave it to me; that I gave it to him; that even though the results of my past HIV tests indicated otherwise, that I’d had it a long time and had given it to others, too; that he would kill me if I’d given it to him; that he would kill himself when I told him I had it; that I would kill him if he’d given it to me; that I’d kill myself for getting it; that I would die.
I knew Antonio for a year before we dated; he seemed so clean and safe. He had a nice family. He sang to me and let me drive the boat with his arms wrapped protectively around my shoulders when we went waterskiing on a nearby lake. He washed my hair, tenderly, with a sponge and a bucket at the barn when the power was out after a thunderstorm. It was hard to believe he had the capacity, or intent, to kill me.
“Do you have someone to go to?” the doctor asked.
Who could I go to with this? But I said anyway, “Yes, I have someone.”
“I’m giving you a prescription for some medicine to take away any anxiety you might feel. Don’t be afraid to take it. I’m also giving you a phone number for an infectious disease doctor and a counselor who specializes in these kinds of things, ” he said.
Ah, these kinds of things. He handed me small slips of paper with phone numbers and the prescription. I noticed he put down a quantity of only six pills. Not enough to end it.
On the way out of the doctor’s office, they asked me to pay my bill. They should not do this. Perhaps they bill you on the spot because they worry you will go home and blow your brains out. In case you’re wondering, they charge you $250 to tell you you are dying.
© 2009 Regan Hofmann
What People are Saying About This
"Insightful and inspiring." — Kenneth Cole
"Extraordinary." — Landon Jones, former managing editor, People magazine
"This is not the life Regan chose. But it is a life she has embraced with courage and passion." — New Jersey Life