Living with Lupus

The intense physical pain of Lupus is overshadowed only by the frustration of dealing with a disease no one seems to understand.

As a child, Sandra Bettinger, now 55, was never allowed to use her lupus as an excuse for anything.

On school mornings, if Bettinger was feeling fatigued or simply didn’t want to deal with bullying classmates mocking her swollen body, she would desperately devise a plan to stay home. Standing in front of the air conditioner, shivering, she would hope for little white polyps to form on her tonsils or some other physical signs of her illness to appear.

“Look Ma,” Bettinger would say in their absence, hopeful she could pull off the ruse. “I’m sick.”

But before her mother could answer, her father’s deep voice would boom from her parent’s bedroom: “You are going to school.”

Throughout her childhood, Bettinger says her father challenged her whenever she claimed to feel sick. He learned to identify when her confessed fevers were real and when they were not.

“It’s all in your head,” he’d tell her when he suspected she was lying.

Sandra Bettinger shows a bald patch, as a result of hair loss related to Lupus. (Photo by Tara Israel)
Sandra Bettinger shows a bald patch, as a result of hair loss related to Lupus. (Photo by Tara Israel)

Fearing her symptoms would be challenged by her father, Bettinger began to keep them to herself. Over time, she started keeping her symptoms hidden from everyone.

Bettinger’s lupus became a dangerous secret.

*   *   *

Systemic lupus erythematosus is an autoimmune disease characterized by an overactive immune system that mistakenly attacks healthy tissue and organs in the body, including the skin, joints, kidneys, lungs, brain and heart. This causes an unpredictable range of symptoms such as fatigue, rashes, joint inflammation, muscle pain or organ failure, some of which can lead to death.

Polaroids of Bettinger's feet from her medical files showing some of the damage caused to both her finger and toenails by Lupus. (Photo by Tara Israel)
Polaroids of Bettinger’s feet from her medical files showing some of the damage caused to both her finger and toenails by Lupus. (Photo by Tara Israel)

The exact cause of lupus is still unknown, and in most cases, the afflicted have never heard of the disease before their diagnosis. Research indicates patients may have a genetic predisposition to it that may be activated by environmental factors, such as stress, infections, certain medications or sunlight. While Lupus can strike anyone, 90 percent of its victims are women and most of the initial diagnoses occur between the ages of 15 and 44. Bettinger was first diagnosed with lupus at the age of 10, after she developed a rash across her face, known as a “butterfly rash.”

As she got older, Bettinger went to great lengths to hide her symptoms. In graduate school, she sometimes wore long white cotton gloves, long sleeves and a hat.

In fact, her attempt to camouflage her puffy limbs on a study-abroad trip in England led to a severe flare-up of the disease that went untreated for weeks. Her whole body was swollen and she was embarrassed by her appearance. By the time she was on her flight home to New York, she couldn’t conceal her symptoms any longer and knew she was severely ill. In great pain, she was rushed to the hospital upon landing.

Bettinger was issued a high dose of Prednisone, an immunosuppressant steroid. She recovered, but something had changed. Even though she was living at home in New York surrounded by family, she felt severely depressed. Her days were spent juggling prescription medications and handling hours-long doctor’s appointments. She felt alone, and trapped indoors where the sun couldn’t hurt her.

“I was like a zombie, the walking dead,” Bettinger recently said in a raspy voice as she stubbed out a cigarette on her kitchen counter. “I had lost that one thing, [hope], that held me together, that one fiber the kept me from going over the edge, of wanting to end it. I was sick. I didn’t want to people to see me. I didn’t want to see myself. I didn’t want to live. It was more than I could take; all I could think was, I can’t live, I can’t. I’m awake all day looking at the ceiling. I can’t sleep at night. It hurts to live.”

Sandra Bettinger at home. (Photo by Tara Israel)
Sandra Bettinger at home. (Photo by Tara Israel)

Shortly after completing graduate school at NYU in 1982, Bettinger tried to commit suicide in her family home. She ended up in the voluntary psychiatric ward at Booth Memorial Hospital in Queens.

*   *   *

According to the U.S. Department of Health and Human Services, 1.5 million Americans currently suffer from lupus, with 16,000 more developing the illness each year. Lupus is more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis, and there is no cure. However, this painful, chronic autoimmune disease remains obscure to the public. The Lupus Foundation of America states that 61 percent of Americans either have never heard of it or know little more than the name of the illness.

AIDS and lupus are both autoimmune diseases, but they differ because AIDS causes the immune system to be underactive, whereas lupus causes it to be overactive. With lupus, the immune system attacks the body. (Lupus also differs from AIDS in that it isn’t spread contagiously by a blood-borne virus, although its exact cause remains unknown.)

“It’s like friendly fire within the body,” explains Dawn Isherwood, a health educator for the Lupus Foundation of America. “Rather than going after a virus or bacteria, the immune system is going after the wrong thing.”

Which organ is attacked varies with each patient. Bettinger’s eyes and joints have been particularly affected.

Experts have called lupus “the great imitator” and “the trash-bin of autoimmune diseases” because its symptoms are so vague and common to many other illnesses. Not all symptoms and identifiers are present at any given time.

“Often times, as lupus is starting to develop, it plays peek-a-boo,” says Isherwood. “It’s like looking at one of those old Polaroid pictures. Until that picture becomes 80 to 85 percent developed, there may be some ambiguities as to what it is.”

*   *   *

Today, Bettinger is resigned to her illness. With the help of the psychiatric treatment she received at Booth Memorial, she slowly recovered from her bout of clinical depression. But her physical symptoms persist. Lately she has been battling an inflammation of the skin around her eye.

“Life goes on,” says Bettinger, who lives alone. Her income is restricted to disability checks. “I don’t have a husband or a child, so I still sometimes battle isolation, but I try to reach out in support groups.”

Collage made by Sandra Bettinger.  She posted it on the Lupus Foundation Facebook page and was excited to see that Lady Gaga, a lupus advocate, "liked" it. (Photo by Tara Israel)
Collage made by Sandra Bettinger.  She posted it on the Lupus Foundation Facebook page and was excited to see that Lady Gaga, a lupus advocate, “liked” it. (Photo by Tara Israel)

It is common for sufferers of chronic illness to experience depression, according to a study published last year in the journal Social Work in Health Care, so support from friends, family and professionals is critical. However, oftentimes the supporters do not understand the illness. Not only have many never heard of lupus, but 42 percent of people in the United States do not believe lupus is disabling and fail to realize its ramifications. Many researchers and social workers believe this is because lupus is relatively invisible. Rashes tend to go away with medication, hair loss can easily be covered up, and weight gain isn’t always obvious. Symptoms like fatigue are also vague and difficult to distinguish from normal fatigue.

“People don’t look sick,” explains Jessica Rowshandel, director of social services at the S.L.E. Lupus Foundation, and a frequent leader of the organization’s Manhattan support group chapter. “If [patients] came in a wheelchair and looked really pale and their face was sunken in, maybe they would get a little bit more support. Family and friends, when they think of joint pain or fatigue, they think it means ‘tired,’ so they don’t understand why [the patient] can’t move, go to work or do the dishes.”

For this reason, Rowshandel advises patients to describe their symptoms and extreme exhaustion precisely and in a way people can understand. For example, “It feels like the flu,” or “It feel like I just ran a marathon,” or “It feels like two tons of metal are on top of my body.”

*   *   *

In a grey, cramped conference room at the S.L.E. Lupus Foundation headquarters in Manhattan this March, Bettinger and seven other patients attended a support meeting on the topic of friends and family. They were seated around a wooden table with their winter coats, wet and dripping from the drizzling rain, hanging off the backs of their chairs. The meeting was attended only by those comfortable speaking in front of a reporter.

It took just a few minutes before group members began to speak openly. “I don’t think [people] can delineate between just physical exhaustion because you’ve overdone it and illness that causes exhaustion,” said one of the attendees, Kernetter Milligan, in a shy, hushed voice. Milligan is a short, 56-year-old African-American mother of three. “You find yourself constantly explaining.”

Karnetter Milligan, 56, and one of her three children, Renwick Milligan, 27. (Photo by Tara Israel)
Karnetter Milligan, 56, and one of her three children, Renwick Milligan, 27. (Photo by Tara Israel)

The group nodded in agreement.

African-American women are three times more at risk for lupus than Caucasian women. A native New Yorker, Milligan was diagnosed with lupus at the age of 29 after she started losing her hair. She moves slowly and with a pronounced limp from pain in her hip. During her twenty-two years working for Empire Blue Cross Blue Shield, she would leave work a half hour early to join her colleagues for lunch so she would have enough time to walk to the restaurant, just a couple blocks away, and arrive at the same time as everyone else. When the recession hit, she was laid off.

“People don’t think we’re sick because we don’t look sick,” said Mary, a shy blonde woman, who wished only to be identified by her first name. “That is the hard part with friends. Not that they are impatient, but that they’re like, ‘Come on, you can do it, you look great, just get out there.’”

“I think people don’t know how to handle it when we are at our worst,” said Christina Torro, 32. Torro was diagnosed with lupus in 2002 after struggling for a long time to label her illness. Her symptoms felt like the flu: stiffness, swelling and muscle aches. She was misdiagnosed so many times that she was forced to do her own research about lupus, which led her to demand to be tested for the disease.

Torro had come to the meeting with her mother. Both mother and daughter were dressed in black and purple—the lupus awareness color—with bracelets to match. Torro has a supportive family and boyfriend, but is deeply hurt by a falling out with her best friend; the friendship ended after Torro’s illness flared up following the birth of her child two years ago.

Christina Torro plays with her daughter, London, in their Yonkers home. (Photo by Jessica Bal)
Christina Torro plays with her daughter, London, in their Yonkers home. (Photo by Jessica Bal)

Lupus patients can have healthy pregnancies, but require constant supervision by their doctors and are considered at high risk of preeclampsia. Torro was forced to deliver her child via emergency C-section a month early because her blood pressure had skyrocketed. After the baby was born she spent six months in the intensive care unit due to numerous complications, including seizures, failing kidneys, fluid around her heart and lungs, anemia and hemorrhages. She also underwent surgery to remove a part of her intestine that had knotted. Her mother feared she wouldn’t make it. During that time, Torro said her best friend failed to visit often and began to distance herself.

“It was like a breakup,” she said, looking visibly upset despite her attempts to appear confident. “I felt lost because I didn’t have that sister bond anymore. She had all these excuses but nothing was real. I could have really used her help.”

“It was very stressful for her,” Torro’s mother said.

“I just think people are scared,” added Milligan.

Everyone nodded. Silence fell over the room.

Rowshandel broke the quiet and said, “What are they scared about?”

“They don’t know what lupus is,” Torro’s mother replied.

Gene Galpern, 60, with short grey-white hair and glasses, was the only man in the room. He remained quiet for much of the meeting, speaking only when Rowshandel asked him a direct question. Most of the time he only nodded along with the conversation as he munched on an oatmeal raisin cookie. He had struggled to open the packaging at the start of the meeting because his hands were so swollen; Mary had to open the plastic wrapping for him. When he did finally speak, his voice was deep and raspy.

Galpern was the most recent attendee to be diagnosed with lupus. His disease is also far from being under control. Over the last two and a half years, his rheumatologist and other doctors have been experimenting with different dosages and medications to try to bring down his over-active immune system. Galpern also suffers from Type I Diabetes, which aggravates his symptoms and pain.

His life has slowed down. He said his relationships with his wife and children have been affected by this illness because he can no longer be as active as he was. He was also forced to retire early from his job as a mail carrier.
 

Gene Galpern (Photo by Jessica Bal)
Gene Galpern (Photo by Jessica Bal)

Many Lupus patients, like Galpern and Bettinger, are forced to leave work, unable to keep up with the stress and demands of their jobs. A 2009 study found that 33 percent of lupus patients were on work disability. “I worked my whole life and then, the roles reversed, basically,” Galpern said. “I was never brought up like that. I was brought up that you have to support your family and that’s the way it was. Now I’m on the other side of this. [With lupus] you’re so much of a burden on your partner sometimes.”

Often, Galpern cannot sleep because of pain, and he will move to a recliner chair in another room so he doesn’t bother his wife at night. “Last week, for example, twice in the middle of the night, I woke up screaming. I was just getting some pain from rolling in bed. I woke everybody up,” he said.

His sense of being a burden makes him feel isolated. Only the support group, he said, really understands what he is going through. “I feel pretty much worthless,” he told the group, “and that you can’t share with your wife or your kids. They don’t want to hear about it. So I try to distract myself but sometimes, I feel like I’m fooling myself. I’ll have to get up or go out. It’s almost like you think of wanting to hurt yourself, but you’re not going to do it. It’s almost like passive suicide. But I say to myself, as bad as it is, you’d be worse if you did something stupid. So I have to try to find ways to release certain things in order to stay alive, I guess.”

He tries meditation, yoga and swimming to calm himself. Swimming is one of the few exercises he can still do comfortably, and it helps with his pain. Having grown up on Coney Island near the water, the sound of waves soothes him.

Bettinger sympathized with Galpern. “Your whole life is structured around this illness that you have,” she said. “You have to think about what the weather is, or it’s too hard to do things, too hard to get dressed or you can’t put on that necklace you wanted to wear because your fingers hurt.”

“It’s a severe struggle sometimes,” Galpern said, before the meeting. “I can’t even open a bottle of Snapple. I have a tool that a friend bought me, so if nobody is home, I have to use it. Even the simplest thing [like] shaving, by the time I put the hot water on my face, my elbows are hurting from the strain of lifting. It takes your time up, your emotions, your spirit, your soul and I don’t like that part of it.” He paused, then added, “I think I’d be worse off if I didn’t have this group.”

*   *   *

A week after the support meeting, Bettinger sat in her small East Side apartment, smoking; she said she is unable to quit. The walls are decorated from floor to ceiling with dolls, African masks, bows and arrows and other collectibles. Pungent incense burned in the corner by the couch. She took long breaks between drags of her cigarette; it repeatedly went out and she had to relight. Her nails painted and short, her greying hair wispy, Bettinger said she had recently recovered from another severe eye infection. She also suffers from Raynaud’s syndrome, which causes poor circulation, leaving her toes purple and gives her trouble walking. She talked for hours about her dreams of being a stand-up comedian. “I want fame,” she said. “I want to be famous, for something. Maybe lupus. Maybe that will be my thing.” She showed off photographs of her past and proudly brought out her collection of lupus awareness buttons from her college days, which have begun to yellow with age. She laughed as she talked about television shows like “House” that have begun to refer to lupus, and talked about how she wished she had gone hitchhiking or backpacking when she was younger.

“I don’t know if I would say the illness defines me,” she said. “It’s part of my story, it’s not me. But my biggest thing is that ever since I was young, my freedom was taken away from me because of lupus. You’re already 21 and you’re a victim—and I hate that word, victim—[but] you’ve got to see a doctor, you’ve got to refill medication and you’re afraid of the sun. The freedom to move around and do things you want to do is gone, and now, I’m just an old lady.”

*   *   *

Simone M. Scully is a New York freelance journalist and playwright, raised as an expat in Toulouse, France. She is also a recent graduate of the Columbia University Graduate School of Journalism.

Tara Israel is Narratively’s photo editor, born and raised among the local fishermen and seasonal Manhattanites of East Hampton and currently residing in New York City.  You can read about some of her recent projects and see photos of the questionable company she keeps at thetisraelirepublic.tumblr.com.

Jessica Bal hails from a two-stoplight town in Massachusetts and now resides in a city with too many lights to count, where she produces media for an arts education organization and looks for any excuse to write, photograph and film stories that she’s curious about.

Secret Life of a Search and Rescue Volunteer

When someone goes missing on a frozen mountaintop or in a wildfire, my team heads out to help when no one else can — even if all we can do is bring back their bodies.

Three kids are missing on the mountain. They missed their check in, and search and rescue (SAR) has been tasked with finding them. It’s what we do. We track down the lost and injured and bring them home. I’ve been a member of this unit, primarily based around Mount Hood, Oregon, but working wherever we are needed in the Pacific Northwest, for about three years. Given my profound lack of experience at the onset, I’ve only actually been useful for about a year, maybe two.

We have a general idea of where the three kids are, or at least where they are supposed to be. At the base of the mountain, where most climbs start, is a climbers’ register where parties write down their intended route, expected return date, and what equipment they have – vital information in just this type of situation.

It’s cold and windy. Visibility is low. No one wants to be in the field on days like this. But, as Rocky, a veteran member once told me, only half joking, “We’re mountaineers. We suffer. It’s what we do.” That suffering is accepted because this is what we volunteered for (and almost all of us are truly volunteers – only the sheriff and a few others are paid). It’s made tolerable knowing that there is someone worse off, someone who needs us.

We will trace the most likely path and hopefully find them hunkered down in a snow cave or some other shelter, but alive. Bringing a victim home alive is why I go up. The satisfaction is like no other. After more than a decade in medicine, as an EMT initially and now as a physician assistant in a busy urban ER, I have revived cardiac arrests, treated trauma and dealt with just about every other medical calamity, but mountain rescue is different. People get injured in the mountains and back country, we get them when no one else can or will. Even if all we can do is bring back their bodies.

And I know how important that can be.

On the night of my first high school dance, the police showed up bearing somber news to my mother. She took me into the back room of the house. “There’s been an accident. Dad’s dead,” my mother told me, barely a quiver in her voice. She was trying to hold it together, but saying that out loud, she couldn’t. My brother, mother and me stood in that back room, with the lights off, and hugged and cried and lost track of time.

He fell while out hiking two states over. Local SAR was bringing the body out of the canyon. They couldn’t save him, but they could return his body to his family. We grieved while we waited for his return, which would take a day or two. It didn’t become concrete or tangible until we had the body. A tremendous service was done for my family by strangers.

Now it is my turn.

I will do for others what had been done for us. I will bring them home, do what I can to prevent further backroom suffering. Paying a debt to the universe makes the insufferable tolerable.

* * *

We are a team of 15 – physicians, general contractors, business executives and even an animal chiropractor, with personalities as varied as the professions. But there is a core tenet among us all: to help those in need.

A resort at the base of the mountain provides a Sno-Cat that transports us up through the groomed ski fields. National forest regulations prohibit mechanized travel beyond certain boundaries, but occasionally, we get permission to ignore them, to save a life. The driver takes us up as far as we can go before the Cat starts to backslide.

This is where the hard work starts. From here on out, we will be on foot. Once over the ridge and onto the next glacier, we break into smaller teams of three or four and separate to search different areas. Bob, a tall, slender guy who made some wise business decisions and retired early, is my team lead. He is tasked with interacting with the other team leads and Incident Command, as well as making sure all of us come home alive. Then there’s Keith, an engineer who makes dad jokes without being a dad; Christopher, an occasional school teacher who’s fond of instigating shenanigans and watching his work unfold; and me, the newest member of the team – the low-man on the totem pole.

The winds are up. The temperatures are down. Visibility is minimal. Freezing fog deposits a thin layer of ice on clothing. Beards freeze and develop icicles. Any exposed skin quickly turns red and raw. The moisture from my breath freezes my goggles. Periodically, I use the rubber handle of my ski pole to scrape the ice out of the goggles. This only provides a brief window of clear vision.

We follow the kids’ intended route up the mountain, up the gentle snow slope, bearing west. It’s a short distance, but it takes us an hour in these conditions. We come up into a bowl, relatively protected from the wind. The route travels up from the bowl and over a ridge. Once on the other side we must be hyper-vigilant. We will be travelling across a large crevasse field, hidden in dense fog. The route leads up a snow and ice gully from the far end of this crevasse field. This is one of the two more common routes for teams to take after they have previously completed the standard route. It represents a step up in technical difficulty, presents complicated route finding, and is an overall longer route. Most of us on the rescue team have climbed this route before, individually or as a team, but not in these conditions.

A fall from their route could have spit the kids out onto this crevasse field. We must search it exhaustively. First, we rope up – tying ourselves together so that if one of us falls into an unseen crevasse, theoretically, the rest of the small team can arrest the fall and retrieve the teammate. A rescuer becomes a liability if he is dead. As the newest, least-experienced member, I’m in the middle of the rope. Bob, on point, has to choose a path around the crevasses. The man in the back is the last hope if the first team members can’t arrest their own fall. Bob scans the snow for signs of weakness indicating a crevasse. I follow the footsteps exactly.

Slowly, methodically, we spread out to search the area. Ice axes are at the ready in the event a rope mate goes into a crevasse. My eyes strain to look for clues through fogged-up goggles. Even a light snow can cover vital clues. We move westward toward the terminus of the route the three kids were attempting.

“I need to search that area down by the big crevasse. Keep eyes on me,” Bob says. Rather than continue with our roped travel, Bob will move more cautiously down towards the crevasse on his own. I head up a ridge and plant myself in a vantage point where I can maintain constant visual contact. The area looks lousy with crevasses, with more likely hidden. Bob is belayed down into the field by Keith, who is anchored to the snow. Any fall should be terminated quickly. Should be. Our gloves have a layer of icy grime, so holding the rope during a fall would require more effort than in more pristine conditions.

He goes out, searches, and returns. No incident, but no evidence found of our three kids either. We’re preparing to keep moving when our radios start crackling and we hear someone from one of the other teams say, “I think I’ve found something.” We all stop and put lift our radios to our ears.

“Should we head up to you?”

Silence. Crackle. “…Yeah.”

My team was searching the lower end of the glacier, so we are some of the last to get to the scene. As we approach, I see the other teams standing around a body. If it weren’t for the people standing around him, I might have walked right by; he was nearly invisible in the waning day, under a fresh layer of snow. I see that no one is frantic. No one is pulling a medical kit out. Our kid must be dead. His mouth is open, in the shape of an “O” and full of snow. I get to him and place my hands on his body. He is stiff and frozen. His base-layer shirt and soft shell jacket are unzipped. There is blood on his thigh, though no obvious deformity or injury. I see no grossly apparent signs of blunt trauma. Some distance away, there is climbing gear strewn at the bottom of the route. One of the other teams had continued searching and found it. It looks like he walked some distance away from the debris field.

Maria, a newly minted ER doctor, digs a little bit of the snow out of his mouth. Not much, just a little. I’m not sure why. It is an image that will stick with me.

“Hey, why don’t I package the body? Not everybody needs to see this,” I offer to the overall rescue leader. Some of the team members have never seen a dead body before.

He pauses for a moment. “Yeah, do it.”

I’m new to mountain rescue, but seasoned to life’s grim realities. The body must be packaged for extrication. He will be covered with a protective plastic tarp and placed into a litter. The litter is like a backboard with small walls and rails. It proves difficult to package him. He is frozen and did not have the foresight to die in a position conducive to packaging. But, I make it work. I have to.

Looking at what’s in front of me, I know what is ahead for the family. I know the sound. I know the dark, backroom scene, huddled in a private anguish that comes after the authorities deliver the news. There’s a wail that comes with unexpected death. It comes from the gut. It’s a sound I heard time and again in those first few days after my father died. I lost a parent, but they have lost a child. I package him as gently as I can. We will get him back to his family. The importance of our task is visceral. I cannot fathom what mourning without the body is. This family will not have to try.

* * *

The radio crackles again. The sheriff is thinking that we should package the body, anchor it someplace safe, and mark the location on GPS. This would allow us to keep searching for the other two. The freezing fog has turned to heavy snow. It was early afternoon, a time in the Pacific Northwest when the sun begins to set, and we are worn. We wouldn’t have more than a few hours of daylight left and still had to get off the mountain.

This is a dilemma. He’s dead, but the other two kids may not be. Until we find them, there’s no way to know. The weather forecast calls for continued lousy conditions for the rest of today and the next few days. Extrication is a lengthy process. Under the best conditions, in more easily accessed terrain, extrication by foot takes half a day. Do we begin the extrication of the body and leave our other two kids to try to survive another night? Do we try to place our first kid somewhere we can find him later and keep searching? In these conditions, among the crevasses, with the accumulating snowfall, it’s unlikely we would be able to find him again. Even anchored in a corner somewhere, location marked on GPS, any manner of event could prevent us from retrieving him. Avalanches could change the landscape of the entire field. There is the risk of continued snowfall and burial. An anchor could fail, leaving the body free to slip into one of the crevasses below.

It’s unbearable, in my mind, to leave him to keep searching. The thought of having to tell the family that we found the body, but left him on the mountain, is crushing. It seems inhumane. But then what would we tell the families of the other two kids if we left the mountain without knowing whether they were alive or dead?

I’m supremely thankful not to have to make that call. There are benefits to being a rookie.

The medical team, my other team, has setup nearby, in an area safe from crevasses or avalanches. There is a tent to escape the wind and warm drinks are being brewed. The medical team is solely concerned with the living. In the absence of proof of life of the other two, the medical team bears watch over the rescuers. The tent is for the rescuers. The warm drinks are for us. Periodically, people have to take a breather, to warm up and mentally recharge. It’s amazing how beneficial something as simple as a warm cup of tea can be in these situations. As one of the new guys, I still feel like I have to prove myself. I stay in the crevasse field and suffer.

Conversations between the rescue leaders in the field and the sheriff’s SAR deputies have been ongoing since we packaged the body. I haven’t been listening. I have no input to offer. Just feet to carry me to wherever I can be useful.

“The sheriff wants us to keep searching.” Word is spreading. My heart sinks into my stomach. I am exhausted. There is no good decision to be reached. I look at my teammates and can tell many are feeling the same. We don’t want to keep searching, but we will.

“SAR base from Team One.”

“Go ahead Team One.”

“Yeah, hey it’s Rocky. We’re not going to do that. It’s cold, it’s late. We’ll never find the body again. We’re bringing the teams in.”

A respected member and veteran of decades of mountain rescue has shut down the sheriff’s plan. Ultimately, it’s the sheriff’s call, but a good leader knows when to listen to experienced heads.

“O.K. Team’s coming in.”

We re-cross the crevassed glacier, this time with a sled with a body in it. Once at the eastern end of the glacier, we raise the whole package up and over the ridge, which is accomplished with ropes, pulleys and brute force. Eventually, we reach the waiting Sno-Cat. The packaged body lies between two rows of bench seats. The seats are full of rescuers. The layers of ice that had been our constant companions begin to melt. Steam rises off each living person’s head. Some people are looking through the camera we found among the scattered belongings. Perhaps a clue will be found to lead us to the other two kids. Perhaps there will be some indication as to what went wrong.

We reach the familiar transition point at the base of the glacier. We get out of the Sno-Cat and unload the package. A short distance below, snow meets parking lot. Rescuers meet sheriff. I head inside. There is to be a debrief. We are reminded of the resources available to us, should we need them, if anyone is experiencing grief or stress from recovering a body.

The body is brought inside the lodge. I can hear the family. By the end of the debrief, the family of our first kid should be well on their way to the city with the deceased. They are not. Word is traveling. The family of our first kid is staying on the mountain to support the families of our other two kids. I can’t imagine how they came to that decision. Their boy is dead. Yet, they remain with the other two families, while the body of their boy travels back to the city.

When I hear this, I remember that the ache I’m feeling all over is just physical pain. It is temporary.

* * *

I return to my warm apartment. The two kids are still up on the mountain. I’m mentally preparing for a return to the cold and misery tomorrow when the page comes through. We are grounded. No searchers will be deployed tomorrow on account of the horrendous conditions. Officially, this is still a “rescue.” The longer our other two kids are out there, the less likely they are to survive, if they are still alive at all. But they are up there, somewhere. I have little faith that this is going to be a rescue.

I feel utterly helpless, sitting in my kitchen, in a worn-out old chair, head back, staring at the ceiling. The debt I set out to pay remains. I am unable to provide the service that was done for my family. Logically, I understand it is out of my hands. The dangers and risks are real. This is a rational decision. In my gut, though, I have failed. This was my task. Bring the bodies home. Yet they remain on the mountain. There is only failure now.

So, I get drunk, the only solution I can think of.

Over the next few days conditions continue to deteriorate and eventually I have to go back to work. Finally, the search gets called off completely.

The following summer, I’m returning from a wildfire when the text comes through from my good friend Bob G., a member of the medical rescue team.

“multiagency effort. found the other 2.” He gives me no context. He doesn’t need to.

There is a great deal of discussion and speculation as to what happened. It doesn’t matter to me. I don’t particularly care how they got there, just where they end up – back with their families.

How It Feels to Be the Biggest Woman at a Clothing Swap

Great, actually.

My bedroom is completely ransacked – clothes are thrown everywhere, purses piled high on my bed. I’m frantically throwing nearly all of my clothes into large plastic bags. Some are still wrapped in the plastic they came in, hanging from metal hangers, as if embalmed and exempt from the passing of time. First to go are the tight designer t-shirts, then the dresses – so many dresses. The black satin cocktail number that once made me feel sexy, but that I could never zip up now. The turquoise one with animal print from Century 21 and the red flowered dress that knocked everyone’s socks off at the company party ten years ago. I used to be so audacious with my wardrobe. Now, I want fewer eyes on me.

I planned on walking, but the load becomes more than I can carry. Instead, I throw the clothes in my car and take off, headed for my first ever clothing swap – where women get together to trade things they no longer want. I’ve been invited by my new friend Sarah to participate in this feminine ritual. This is more than the usual spring cleaning for me; I need to get rid of these painful reminders of the woman I outgrew, literally and figuratively. I no longer want to feel body-shamed by my closet, which is stuffed with clothes that are literally six sizes too small, some that have hung there, unworn, for over a decade while I tried to convince myself I could be someone else.

As I schlep my bags of clothes up to Sarah’s pre-war walk-up, I start to worry that, as a size 12, I’ll be the biggest woman there and nobody will want my offerings. But there’s no turning back now.

* * *

My obsession with fashion started when I was a teenager, when adolescence brought with it a horizontal growth spurt. I didn’t object to my new breasts and butt, but the rapid increase in my thighs and belly made me want to buy every piece of fabric ever made just to cover them up. I was convinced that buying the tightest jeans possible could stymie my out-of-control thighs and shrink them back to their original size. If my clothes were cool enough, stylish enough, expensive enough, everyone would just focus on them and not the fact that I had blown up underneath them.

At 16, the author playing dress up at a friends’ house in Park Slope, Brooklyn. (Photos courtesy the author)

By the time I was 14, I was a size 12, and no fashionable clothing could hide the discomfort I felt. It wasn’t enough to have nice clothes, I still wanted to be thin like the other girls. To be what I thought was normal. Through my teens and 20s, I tried every trend: cleanses, the lemonade diet, the cabbage soup diet, no carbs, low carbs. I tried taking diet pills, Dexatrim every morning with endless glasses of water, but it only gave me headaches and constant trips to the bathroom. Nothing worked.

Finally, I spent one full year when I was in my thirties eating pre-portioned frozen food out of a box and getting up every day at 5:30 in the morning to work out. It worked. I dropped to a size six; in certain styles I was even a four.

I had always hated dressing rooms – the bright lights zooming in on my imperfections, the dread of nothing fitting right. But then, the first time I went shopping after the weight loss was a revelation. Almost everything fit. I remember the moment I pulled a red cotton Brooklyn Industries dress over my head and caught sight of my new self in the mirror; it was as if it was made for me, and I looked incredible. Even though I was thinner, I still had feminine curves, and this dress brought out every one. The cleavage, the thin waist. I wore it out of the store, crumpling up my old clothes and having the cashier cut the price tag off of me at the register. I felt taller, sexier. I bought a whole new wardrobe for my new start. At 38, for the first time, I began to love the warmer months, when dress season was in full bloom.

But the sacrifices I made to get into those dresses meant, ironically, that I rarely went out to dinner or parties because I was afraid of gaining weight. It’s amazing how often people commented about me not drinking or eating, often making me more self-conscious. When I did give in and go out I’d gain weight instantly. Every single time. It was a total Catch-22. The whole purpose of those clothes was to show myself off, to push me to socialize more, but in reality, they kept me in my studio apartment, away from the world, afraid to live.

The author, far right, during the last week of senior year in college.

Eventually I tired of the restrictions and disappointments and took a break from a life of deprivation. The weight crept back on and then some. Most of my favorite clothing no longer fit, regardless of how many pairs of Spanx I wore. Still, I held onto them for over ten years, hoping to someday return to that size, that woman. I had tried to stick to discipline, but eventually being a certain size just wasn’t worth how hard I had to work. It was one thing to say no to dessert or put the bread basket away, but to constantly be hungry and depleted felt at odds with my energetic personality. I wanted to go out, socialize, travel and taste different foods, have different experiences. Being thin without enjoyment defeated the purpose of trying so hard to look the part. I wanted to be part of my own life.

Now, at 47 I’m packing up all of these dresses that belonged to a woman I’m no longer trying to force myself to be. A woman who needed to give up everything for how others might see her. A woman whose biology was never destined for the petite rack. I still miss how I looked in those years of denial, but I don’t miss how I felt.

* * *

I carry three large bags filled to capacity; the plastic handles digging into my skin, turning my fingers red. I walk up four flights of stairs to Sarah’s apartment, where there are tall green plants in every corner and books falling off the shelves. Sarah comes to greet me, her brown hair flowing down to her shoulders, bouncing as she cheerily introduces me to her friends. My heart sinks as I realize most of the women here are in the size six range, a zone I hit just once, and briefly, in my life. I doubt there’s going to be anything here for me.

Sarah pours wine into small glass jars and spreads out homemade pesto sandwiches with brie and bacon marmalade. As we sip our wine and scoop up the melted cheese, the swap begins. Each woman takes a turn presenting her items to the group. Even though everything is being donated, you still want to make sure someone takes home your once-treasured goods with a little pitch. Great color but I have outgrown it. Perfect for summer but too revealing for me. It says, “Love me I’m a Vegetarian,” but I eat meat now so…

A thin brunette with a lot of energy bolts up to the front of the room. As she begins to describe her clothes, all the attention is on her. People start raising their hands and laughing, this is actually kind of fun. “This is the one I got when going to the holiday party last year,” she explains. “And this one my mother-in-law got me but is clearly not my style.” Some of the women talk of ex-boyfriends as they explain the stories behind their clothes. Some of their new jobs. Everyone here wants to get rid of their pasts too. Hearing each story – vignettes about their items, their lives, brings me closer to the women. I feel connected. While they physically appear different than I, they too have stories of wanting to move on in their lives and away from a time that has passed. The clothing swap allows us all the opportunity to release our nostalgia.

I’m surprised at how comfortable these women are in their own bodies. One short woman with a black long bob actually takes off her blouse and begins to try on the clothes right in front of us, her white cotton bra bright like neon lights. She throws on blouses, sweaters and even dresses as if no one is watching. Some of the women know her and her fashion show just blends into the background for them. But I can’t stop staring. I am no prude, but how can she take off her clothes in front of all of these people like she’s in a Loehman’s dressing room? What is that like, to be confident enough in your body to strip down in front of strangers like it’s no big deal?

Eventually it’s my turn to present. My palms begin to sweat. I want the ladies to love my clothes as much as I once did, to realize how important these items were to me in my life – my nostalgia, my years of trying to change myself, and this final moment of release as I let all of that pressure go. Each garment on display represents my sense of self when I bought them. I almost feel like if they reject my clothes, they will be rejecting a part of me. I’m afraid they might ignore me because of my current size, like some men do when we meet for the first time.

The author today.

I take a deep breath and go to the front of the living room. I open up my shopping bags and begin with an apology. “I used to be a variety of sizes from six to 12, so hopefully you will find something you like,” I say, as I start to pull out one meaning-laden item after another. I take out long flowy dresses that I wore when I first lost considerable weight in my 30s, when friends had asked if I had an eating disorder, but it was a combination of Jenny Craig and 5:30 a.m. workouts. I pull out my favorite red dress and it’s snatched up immediately. I feel much better about being here. Then I pull out a black strapless dress I never even wore. It was my “just in case I get invited” dress for parties I never went to, wanting to be someone’s plus one but often being passed over for a younger, more petite date. Someone takes this one, too, and I can feel the load lighten, all of those years of watching and wishing, falling away as I give away one too-small dress after another.

It’s a bittersweet feeling to let them go, knowing that I bought these clothes hoping for a different type of life. Now I am saying goodbye to the woman who wore them, or hoped to. Maybe wisdom really does come with age, but whatever finally let me let go of the insecurities of my youth, I’m no longer willing to base my self-worth on an arbitrary standard that I’m biologically incapable of attaining. All of my old insecurity isn’t going to disappear overnight, but passing along my clothes, my past, and my younger self feels noble, graceful, and it leaves room in my life for me, the real me.

I’m a Fifty-Year-Old Mom. I Just Had Sex in the Back Seat of a Car.

Sometimes acting like a teenage rebel is the only way to feel in control.

On a hot and humid night last June, I steered my car over twisting country roads toward a small lakeside town for a romantic rendezvous. I had spent the day at a funeral, reflecting on the fact that at fifty, I had more miles behind me than ahead. Oddly, my paramour had also spent the day at a funeral, and as the summer sun disappeared we made plans to meet halfway between our towns for a drink.

It was nearly eleven when I turned my car onto Main Street, and James was growing impatient. We were speaking on the phone when I caught a glimpse of him. Strikingly handsome, he looked at least a decade younger than his 61 years. Running and doing chores on his rural property kept his body lean and muscular, and his face betrayed few traces of the anguish I knew lay in his heart.

James met me at my car, and as we walked toward the restaurant he put his arm around me. I felt a shudder of excitement run down my spine and I pushed in closer to feel his body. When we sat at the bar he swiveled his chair, pushed his knees against mine, and leaned in close to talk. Our faces were pressed within whispering distance and I inhaled his scent. The drinks we ordered were superfluous; this was all a graceful dance of foreplay.

The bar was teeming with a coarse-looking crowd of men and women who had deeply lined faces and leather jackets. The fact that we were completely out of place only heightened our excitement. We huddled and made witty comments about the antics of other patrons, parting only to fling our heads back in hysterics. We sat at the bar laughing and kissing, and before long James ran his hand up my leg and under my skirt. On previous dates he had teased me about being a Puritan in public, but X-rated in private, but that night I made no attempt to be discreet.

It felt mischievous to be strangers in a raucous tavern far from home in the middle of the night. We reveled in escaping the constricting bonds of our everyday lives – him a lawyer, me a divorced single mother. Our behavior was an unspoken act of defiance against the taunt of age, and the gloom of funerals that had become a common part of our lives.

Outside the restaurant James kissed me deeply and with a new fervency. We were passionately entangled while patrons passed by, and I whispered that we needed to go somewhere private. James began walking me to my car, and I assumed I would follow him to the adjacent hotel, or to his house an hour away.

When we got to my car he told me to get in the back seat. I refused, saying that my kids had left a mess in my car. James took my hand and led me across the lot to his immaculately clean Mercedes.

“Get in,” he said again.

“I’m not having sex with you in a car,” I replied laughing, while thinking of how improper it would be for a middle-aged mother to do so.

“Just get in,” he repeated, smiling mischievously as he opened the rear door.

There was no point in arguing; I knew I’d get in, so I slid onto the back seat. James was right behind, and before I heard the click of the door closing he was kissing me. It was futile to fight the longing we had been feeling for the past hours. Soon, all thoughts of motherhood and what was proper disappeared. We had been together many times before, but that night we devoured each other.

“I can’t believe I just had sex in a car in a public parking lot,” I said afterward, as I searched for my bra in the front seat.

“It was exciting, like in high school,” James replied, looking flushed and exhilarated.

As I drove home in the wee hours of the morning I felt furtive pride that James and I had taken a rebellious stand against the inevitability of age, and society’s expectation that we go gently into the night. In the days and weeks that followed we frequently reminisced about our romp in the car, and how it brought us back to our adolescence; a time of freedom and endless promise, a time before responsibilities and painful regrets.

The Day My Therapist Dared Me to Have Sex With Her

My analyst and I grew more intimately connected each week of treatment...but I never saw this indecent proposal coming.

It’s the waning moments of my fourth session with a new therapist. I’m holding back — and she knows it. My entire body feels tense, not ideal for the setting. I try to relax, but the plush leather couch crumples under me when I shift, making the movements extraordinary. I’ve barely looked into my therapist’s blue eyes at all, and yet I think the hour has gone very well. Of course it has. On the surface, when the patient has been highly selective of the discussion topics, therapy always resembles a friendly get-together.

“Well,” my therapist, Lori, says, the millisecond after I become certain our time is up and I might be in the clear. “I don’t think I should let you go until we’ve at least touched on what was put out there at the end of last week’s session.”

I so supremely wanted this not to come up. My eyelids tighten, my mouth puckers to the left, and my head tilts, as though I’m asking her to clarify.

“When you said you’re attracted to me,” she continues.

“Oh, yeah,” I say. “That.”

Back in session three Lori was trying to build my self-esteem, the lack of which is one of the reasons I’m in treatment. Within the confines of my family, I’ve always been the biggest target of ridicule. We all throw verbal darts around as though we’re engaged in a massive, drunken tournament at a bar, but the most poisonous ones seem to hit me the most often, admittedly somewhat a consequence of my own sensitivity. I’ve been told it was historically all part of an effort to toughen me up, but instead I was filled with towering doubts about my own worth. And since 2012, when I gave up a stable, tenured teaching career for the wildly inconsistent life of a freelance writer, I’ve had great difficulty trusting my own instincts and capabilities. I told Lori that I wish I was better at dealing with life’s daily struggles instead of constantly wondering if I’ll be able to wade through the thick.

She quickly and convincingly pointed out that I work rather hard and am, ultimately, paying my bills on time, that I have friends, an appreciation for arts and culture, and so on. In short, I am, in fact, strong, responsible and “pretty good at life.”

Then Lori heightened the discussion a bit. “I also feel that it is your sensitivity that makes you a great catch out there in the dating world,” she said, to which I involuntarily smiled, blushed and quickly buried my chin in my chest. I was too insecure and too single to handle such a compliment from a beautiful woman.

“Why are you reacting that way?” Lori asked.

I shrugged my shoulders, only half looking up.

“Is it because you’re attracted to me?”

I laughed a little, uncomfortably. “How did you know?”

She gently explained she could tell the day I walked into her office for the first time, after I flashed a bright smile and casually asked where she was from.

Now, a week after dropping that bomb, Lori asks, “So, why haven’t we talked about it?”

“I was hoping to avoid it, I suppose.” I tell her the whole notion of having the hots for a therapist is such a sizable cliché that I was embarrassed to admit it. “For Christ’s sake,” I say, throwing my hands up, “Tony Soprano even fell in love with his therapist.”

Lori snorts, rolls her eyes. “I knew you were going to say that.”

I smile, shake my head and look around the room, denying acceptance of my own ridiculous reality.

“It’s OK,” Lori says, grinning. “We can talk about this in here.”

I look again at her stark blue eyes, prevalent under dark brown bangs, the rest of her hair reaching the top of her chest, which is hugged nicely by a fitted white tee under an open button-down. She jogs often, I’d come to find out, which explains her petite figure and ability to probably pull off just about any outfit of her choosing.

I still can’t speak, so she takes over.

“Do you think you’re the first client that’s been attracted to their therapist?” she asks rhetorically. “I’ve had other clients openly discuss their feelings, even their sexual fantasies involving me.”

“What?” I cackle, beginning to feel as though I’ve moseyed onto the set of a porno.

“It’s true,” she says, acknowledging her desk. “What’s yours? Do you bend me over and take me from behind?”

Nailed it.

“If that’s what you’re thinking, it’s OK,” she goes on, earnestly, explaining that she’s discussed sexual scenarios with her clients before so as to “normalize” the behavior and not have them feel their own thoughts are unnatural. By showing the patient a level of acceptance, she hopes to facilitate a more comfortable atmosphere for “the work” — her painfully accurate pseudonym for psychotherapy.

I take a second to let the red flow out of my face, and ponder what she said. I’m a little unsure about this whole technique, but the more I think about it, the more it makes sense. So I go home, incredibly turned on and completely unashamed.

* * *

One of the great breakthroughs I’ve had in the thirteen months since I began seeing Lori (who agreed to participate in this article, but requested that her full name not be published) is a new ability to accept the existence of dualities in life. For instance, I’ve always had a tremendous sense of pride that, if it doesn’t straddle the line of arrogance, certainly dives into that hemisphere from time to time. I’m great at seeing flaws in others and propping myself up above them by smugly observing my character strengths. I’ve never liked that about myself, but the harder concept to grasp is the fact that I can be so egotistical while also stricken with such vast quantities of insecurity.

In treatment I came to realize that all people have contradictions to their personalities. There’s the insanely smart guy who can’t remotely begin to navigate a common social situation, the charitable girl who devotes all her time to helping strangers, but won’t confront issues in her own personal relationships. In my case, my extreme sensitivity can make me feel fabulous about the aspects of myself that I somehow know are good (my artistic tastes) and cause deep hatred of those traits I happen to loathe (the thirty pounds I could stand to lose).

My next session with Lori is productive. We speak about relationships I’ve formed with friends and lovers, and how my family may have informed those interactions. One constant is that I put crudely high expectations on others, mirroring those thrown upon me as a kid. I’m angered when people don’t meet those expectations, and absolutely devastated when I don’t reach them. Lori points out that it must be “exhausting trying to be so perfect all the time.” I am much more comfortable than I was the week prior, and can feel myself being more candid. I’m relieved that the whole being-attracted-to-my-therapist thing doesn’t come up.

Then, a week later, Lori mentions it, and I become tense again.

“I thought I’d be able to move past it,” I say, adding, “We aired it out, and it’s fine.”

As definitive as I’m trying to sound, Lori is just as defiant.

“I’m glad you feel that way,” she begins, “but I think you owe yourself some kudos. This kind of therapy,” she shares, “isn’t something just anyone can take on.” Such honest discussion doesn’t simply happen, it takes tremendous guts, and Lori can see that I am dealing with it relatively well, so I should praise my own efforts.

“Shit, we both should be proud of ourselves,” she says. “It’s not easy on the therapist either, you know.”

“Why not?”

“Because talking openly about sex is risky at any time, much less with a client.” She explains that therapists are warned any semblance of intimacy can be easily misconstrued. “We learn in our training to not personally disclose, for example,” she says, but adds that, occasionally, transparency can be helpful.

“Still, with you,” she continues, “until I raised the question, I didn’t know for sure that you would go with it; for all I knew you’d run out of here and never come back to risk being so uncomfortable again.”

She’s building my confidence more, and I’m learning that I play a much bigger role in how my life is conducted than I often realize. My treatment wouldn’t be happening if I weren’t enabling it.

Then she says, “And don’t think it’s not nice for me to hear that a guy like you thinks I’m beautiful.”

Crippled by the eroticism of the moment, and combined with the prevailing notion that no woman this stunning could ever be romantically interested in me, I flounder through words that resemble, “Wait…what?”

“If we were somehow at a bar together, and you came over and talked to me,” she says, then flips her palms up innocently, “who knows?”

I laugh again and tell her there’d be almost no chance of me approaching her because I’d never feel like I had a shot in hell.

“Well, that’s not the circumstances we’re in,” she says. “But you might. Who knows?”

I’m confused — Is she really attracted to me or is this some psychotherapeutic ruse? I’m frustrated — I told her I didn’t really want to talk about it. Shouldn’t she be more sensitive to my wants here? I’m angry — Is she getting an ego boost out of this? Most of all, I don’t know what the next step is — Am I about to experience the hottest thing that’s ever happened to a straight male since the vagina was invented?

There were two ways to find out:

1) Discontinue the therapy, wait for her outside her office every day, follow her to a hypothetical happy hour and ask her out, or

2) Keep going to therapy.

* * *

A week later, I’m physically in the meeting room with Lori, but mentally I haven’t left the recesses of my mind.

“Where are you today?” she asks, probably noticing my eyes roving around the room.

“I don’t know.”

“Are you still grappling with the sexual tension between us?”

Here we go again.

“Yes,” I say, with a bit of an edge in my voice, “and I don’t know what to do about it.”

Lori, ever intently, peers into my eyes, wrinkles her mouth and slightly shakes her head.

“Do you want to have sex with me?” she asks.

We both know the answer to that question. All I can do is stare back.

“Let’s have sex,” she announces. “Right here, right now.”

“What?” I respond, flustered.

“Let’s go!” she says a little louder, opening up her arms and looking around as if to say the office is now our playground, and, oh, the rollicking fun we’d have mixing bodily fluids.

“No,” I tell her, “You don’t mean that.”

“What if I do?” she shoots back. “Would you have sex with me, now, in this office?”

“Of course not.”

“Why ‘of course not’? How do I know for sure that you won’t take me if I offer myself to you?”

“I wouldn’t do that.”

“That’s what I thought,” she says, and tension in the room decomposes. “Mike, I don’t feel that you would do something that you think is truly not in our best interest, which is exactly why I just gave you the choice.”

Her offer was a lesson in empowerment, helping me prove that I have an innate ability to make the right choices, even if I’d so desperately prefer to make the wrong one.

I see what she means. I’m awfully proud of myself, and it’s OK to be in this instance. I’m gaining trust in myself, and confidence to boot. But, as the dualities of life dictate, I’m successfully doing “the work” with a daring therapist, while at the same time not entirely convinced she isn’t in need of an ethical scrubbing.

* * *

I don’t have another session with Lori for nearly three months, because she took a personal leave from her place of employment. When our sessions finally resumed, I could not wait to tell her about my budding relationship with Shauna.

Ten minutes into my first date with Shauna — right about the time she got up from her bar stool and said she was “going to the can” — I knew she would, at the very least, be someone I was going to invest significant time in. She was as easy to talk to as any girl I’d ever been with, and I found myself at ease. Plans happened magically without anxiety-inducing, twenty-four-hour waits between texts. Her quick wit kept me entertained, and I could tell by the way she so seriously spoke about dancing, her chosen profession, that she is passionate about the art form and mighty talented too. Shauna is beautiful, with flawless hazel eyes and straight dark hair, spunky bangs and a bob that matches her always-upbeat character. She is a snazzy dresser and enjoys a glass of whiskey with a side of fried pickles and good conversation as much as I do.

Things escalated quickly, but very comfortably, and since we’d both been in our fair share of relationships, we knew the true power of honesty and openness. So upon the precipice of my return to therapy I told Shauna about Lori, and admitted to having mixed feelings about what I was getting back into. I told her I was at least moderately uncertain if my mental health was Lori’s number-one concern since she always seemed to find the time to mention my attraction to her.

The first two sessions of my therapeutic reboot had gone great. Lori appeared genuinely thrilled that I was dating Shauna and could see how happy I was. I wasn’t overwhelmed with sexual tension in the new meeting room, though it wasn’t actually spoken about, and in the back of my mind I knew it was just a matter of time before it would start to affect my ability to disclose my thoughts to Lori again.

Then, while attempting to ingratiate myself with my new girlfriend’s cat by spooning food onto his tiny dish on the kitchen floor, I hear my phone ding from inside the living room.

“You got a text, babe,” Shauna says. “It’s from Lori.”

“‘I’m so impressed with you and the work you’re doing…’” Shauna reads off my phone from inside the living room, inquisitively, and not happily. I stuff the cat food back into the Tupperware and toss it into the refrigerator. I make my way into the living room, angry at myself for not changing the settings on my new iPhone to disallow text previews on the locked screen. Shauna’s walking too, and we meet near the kitchen door. “What’s this?” she says, holding up the phone. “Your therapist texts you?”

I take the phone from Shauna and say the most obvious, cliché-sounding thing: “It’s not what it seems.”

As I text back a curt “thanks,” Shauna tells me she’s going to ask her sister, a therapist herself, if it’s OK to text patients.

“Don’t do that.” I say, a little more emphatically. “I promise, this is nothing to be worried about. We’re not doing anything wrong.” I explain that Lori’s just trying to build my self-esteem.

“The only reason I’m even bringing this up is because you said you weren’t sure about her in the first place,” Shauna reminds me. I can tell she regrets looking at my phone without my permission, but I completely understand her feelings.

At my next session I tell Lori that Shauna saw her text and wasn’t thrilled about it.

“She probably feels cheated on to some degree,” Lori says. “A relationship between a therapist and a patient can oftentimes seem much more intimate than the one between a romantic couple.”

Lori goes on to point out that the reason she feels we can exchange texts, blurring the lines between patient/doctor boundaries — a hot topic in the psychotherapy world these days — is because she trusts that I’ll respect her space and privacy. “You’ve proven that much to me,” she says.

On my walk home, instead of being angry at Lori, I understand her thinking behind the text. But I’m also nervous about how Lori and Shauna can ever coexist in my life.

Isn’t therapy supposed to ameliorate my anxiety?

* * *

A week later, Lori begins our session by handing me a printout explaining the psychotherapeutic term “erotic transference” written by Raymond Lloyd Richmond, PhD. It says that erotic transference is the patient’s sense that love is being exchanged between him or herself and the therapist — the exact sensation I was experiencing with Lori, of which she was astutely aware.

According to Richmond, one of the primary reasons people seek therapy is because “something was lacking in their childhood family life,” perhaps “unconditional nurturing guidance and protection.” Upon feeling “noticed” and “understood” by a qualified therapist, sometimes a patient can be “intoxicated” by their therapist’s approval of them. A patient may in turn contemplate that a love is blossoming between them, and, in fact, it sort of is.

From an ethical standpoint, Richmond argues all therapists are “bound” to love their patients, for therapists are committed to willing “the good of all clients by ensuring that all actions within psychotherapy serve the client’s need to overcome the symptoms” which brought them into treatment. This takes genuine care and acceptance on their part. However, a patient can easily confuse the love they feel with simple “desire.” They’re not quite in love with their therapist, so much as they yearn for acceptance from someone, and in those sessions they just happen to be receiving it from their doctor.

Lori tells me that, all along, she has been “working with what I gave her” and that because I flirted with her a bit, she used that to her advantage in the treatment. In employing countertransference — indicating that she had feelings for me — she was keeping me from feeling rejected and despising my own thoughts and urges.

“There’s two people alone in a room together, and if they’re two attractive people, why wouldn’t they be attracted to each other?” says Dr. Galit Atlas. A psychoanalyst who’s had her own private practice for fifteen years, Dr. Atlas has an upcoming book titled The Enigma of Desire: Sex, Longing and Belonging in Psychoanalysis, and I sought her as an independent source for this essay to help me understand Lori’s therapeutic strategies.

Dr. Atlas explains that there are certain boundaries that cannot be crossed between therapist and patient under any circumstances — like having sex with them, obviously. But many other relationship borders can be mapped out depending on the comfort level of the therapist, as long as they stay within the scope of the profession’s ethics, which complicates the discussion surrounding erotic transference.

“As a therapist, I have a role,” Dr. Atlas says. “My role is to protect you.” She says it is incumbent on the therapist to not exploit the patient for the therapist’s own good, but admits that the presence of erotic transference in therapy brings about many challenges. “[Attraction] is part of the human condition,” she observes. In therapy, “the question then is: What do you do with that? Do you deny it? Do you talk about it? How do you talk about it without seducing the patient and with keeping your professional ability to think and to reflect?”

I ask her about the benefits of exploring intimacy in therapy, and Dr. Atlas quickly points out that emotional intimacy — though not necessarily that of the sexual brand — is almost inevitable and required. “An intimate relationship with a therapist can [be] a reparative experience — repairing childhood wounds — but mostly it’s about helping the patient to experience and tolerate emotional intimacy, analyzing the client’s anxieties about being vulnerable and every mechanism one uses in order to avoid being exposed.”

Dr. Atlas says this topic speaks to every facet of the therapeutic relationship, regardless of gender or even sexual orientation, because intimacy reveals emotional baggage that both the patient and therapist carry with them into the session. But this isn’t a symmetrical relationship, and the therapist is the one who holds the responsibility.

“Freud said that a healthy person should be able to work and to love,” she says. “In some ways therapy practices both, and in order to change the patient will have to be known by the therapist. That is intimacy. In order to be able to be vulnerable, both parties have to feel safe.”

After I briefly explain all that has gone on between me and Lori, Dr. Atlas steadfastly says she does not want to judge too harshly why and how everything came to pass in my therapy. “I don’t know your therapist, and I don’t know your history,” she says. But she offers that I should “explore the possibility” that I might have created and admitted my sexual adoration of Lori because one of my fears is to be ignored, not noticed.

Then I offer: “Maybe this essay is being written for the same reason.”

“Exactly.”

Maybe I wanted to interview Lori about erotic transference in my therapy sessions for that same reason as well…to stand out as the most amazingly understanding patient ever.

* * *

“I want to be very clear that this was never about feeding my own ego,” Lori says about her approach to my treatment. “We were always doing this in your best interest.”

I’m in Lori’s office, a tape recorder rolling and a pad and pen in my hands.

“I felt I was doing a disservice to you if I didn’t ‘out’ what I felt was weighing on us, which, honestly, felt like a heavy secret,” she says, pointing out that she discussed my therapeutic process for many hours in her required supervision meetings.

In order for Lori to advance in her field as a social worker, she has to attend 3,000 conference hours with another professional to go over casework — kind of like therapy quality control.

We talk about all of this during one of my scheduled sessions, for the entire hour — and go over by a few minutes, too.

Lori says that when she began her career as a social worker, she decided she wasn’t going to shy away from any subjects. “It’s typical for a client to [have] a habitual desire to sweep things under the rug,” she observes, especially about taboo topics. It can become a cycle of behavior that Lori seeks to break.

I refer back to the time when, unprovoked, she brought up my attraction to her.

She says she mentioned it to avoid what therapists call “door-knobbing,” which is when a patient will purposely mention some huge reveal right at the end of a session so as to sidestep a lengthy conversation about it.

“My only question for you is, was I wrong for bringing it up?” she asks. “Only you can answer that.”

Lori’s great at forcing me to reflect.

“I guess when I said I was over it and could move on, that was an example of my strict black-and-white thinking,” I say, throwing back some language she’s used often to describe my challenge in accepting dualities. In my mind, I was either attracted to her and shouldn’t see her anymore, or I wasn’t attracted to her and could still have her be my therapist. There was no in between.

I realize now that she wasn’t wrong for mentioning my feelings for her, even when I didn’t want her to. Lori noticed that I was frustrated with myself and wanted me to know that an attraction to a therapist is so normal and happens so frequently that there are technical terms for it.

I turn my attention towards the presence of countertransference in our session. I’m trying to come up with an actual question here, but, really, I just want her to confirm her feelings for me are real. So I say, referring to her feelings, with a great degree of difficulty, “It’s funny that they seem genuine to this day.”

“They are genuine,” Lori says, adding a moment later: “I think it might be a good idea if we explore why our discussing it suggests a lack of authenticity.”

“It doesn’t, necessarily,” I begin, then stammer through a few sentences, worried I might offend her by implying she’s been dishonest. I finally settle on, “I guess it comes back to my self-esteem issues. Why would a beautiful woman think I’m attractive?”

Lying in bed with Shauna a few months into our relationship, I ask her what she thought about me the moment she first saw me. I’m fishing for a compliment. But we met on Tinder and I just hope that seeing me in person wasn’t some kind of letdown for her after swiping right on my hand-picked glamour shots. Obviously she isn’t going to say something so awful after having committed to me for so long. It’s a slam-dunk ego boost.

She says she liked the fact that I was wearing a blazer and a tie on a first date. She adds that I was a little shorter than she anticipated, but was content with the two of us at least being the same exact height.

“What did you think when you first saw me?” she asks, turning it around, naturally.

Staying committed to my honesty-at-all-costs policy, I say, “I thought you were really beautiful, but not to the point where I was intimidated by you, which was very important because if I was, you would have gotten a very unconfident version of me, and we probably wouldn’t have hit it off as well as we did.”

Shauna thinks about that for a second, and eventually nods “OK.”

I explain that my insecurity could often get the better of me in dating situations. It was easy to convince myself that I’d be rejected by the girl I was with, especially if I thought she was out of my league. I would then slip into a nervous and reserved state that isn’t at all reflective of my true self.

I’m essentially saying that I was so thrilled to not find Shauna so extraordinarily pretty that I couldn’t accept her being on a date with me. That thought made so much sense at the time I said it, but I’ve since come to realize it is as ridiculous as it is insulting. After ten months of being with Shauna, I’m still completely floored by her, on every level, including a physical one. It gives me great pride to walk into a room with her, and I don’t imagine that changing. Therefore, she actually did meet a confident “version of me.” The way people look doesn’t drastically change in ten months but a person’s perception of self can. It seems my emotional workouts in erotic transference were just beginning to produce results.

* * *

“People fuck up,” Lori informs me during one winter session. “Therapists have slept with clients before, just like politicians have had sex with their interns. But, so you have a full understanding of how this works, we can date.” She explains the parameters as outlined in the social worker’s code of ethics. One of the many stipulations is that we wouldn’t be able to see each other, under any circumstances, for at least two years before dating. She tells me she loves her job, and there’s no way she would ever sacrifice my safety or her career for anything, so she would strictly follow all the dictated rules. “If you truly want to date me, there is the option. But it’s ultimately up to you.”

I know what she’s doing here — putting the onus on me, just like last year when she said we could have sex. The difference this time is the answer I want to give is on par with all of my involuntary urges.

“I don’t want to stop the work we’re doing,” I say. “At this point, it’s far too valuable to me, and, really, I know very little about you.” She’s beautiful, exercises, is smart, funny, professional, enjoys good TV…and that’s about it. Aside from whether or not we’d even both be single in two years, and if we’d be in the correct mind frame to explore a relationship, there are several other things I’m considering here: Would Lori and I really be compatible in every way? Would she ever see me as a lover, a partner, an equal, and not a patient? Could I ever reveal a detail about myself, or even just a shitty day of work, without wondering if she was picking it apart and analyzing it?

Frankly, all those questions could be answered in the positive. But, even if I wasn’t in a happy relationship — Shauna makes this choice much easier, for sure — I wouldn’t go that route. I’d be out a therapist.

* * *

It’s a beautiful spring night in New York and only sidewalk seating will do. Shauna and I are out to dinner at a restaurant near her Queens apartment, and we’re both in good spirits. The weather and the alcohol consumption are partly to blame for that, but, on cue with the season’s change, I feel I’ve turned an emotional corner. Work payments that were past due are finally finding their way into my bank account. As it turns out, my short-term money troubles were not an indication that I had no business being a writer, or that my life changeup was as irresponsible as unprotected sex at fourteen years old.

I’d told Lori as much that afternoon. I took a mental step back from my current situation and realized that in spite of my recent hardships, I was succeeding. I summarize my session for Shauna, who nods in agreement, lovingly pointing out that she’s had the same challenging freelancer experiences as a dancer.

“You’re doing great, babe,” she says matter-of-factly.

“Thank you. That means a lot,” I respond. “I guess if I’m going to be a writer I just have to accept all this and have faith in myself. The way Lori put it was, ‘You just have to go all-in.’”

“Good,” Shauna says. “You should listen to the women in your life.”

* * *

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I’m Married. I’m a Woman. I’m Addicted to Porn.

Countless couples have tackled the taboo subject of racy videos and illicit orgasms. What happens when it’s the woman who can’t stop watching?

This story features explicit situations that may not be suitable for all audiences.

It’s past two a.m. and my husband’s breathing has become long and even. An opportunity presents itself. I slip my right hand down my pajama pants and move slowly, careful not to bump my elbow into his side rib, or bring my hips into it. Too much movement or sound will wake him, and to be found out for something like this is not just embarrassing but potentially destructive. He’ll think he doesn’t satisfy me, and men do not like feeling inadequate, especially when it comes to matters of the bedroom. Or maybe he’ll feel sorry for me. And who wants to fuck someone they pity?

Even worse, maybe he’ll finally say the words I’ve been waiting for him to say since I first told him that I am a sex addict. That he’s bored with it. He’s disgusted. He’s had enough.

I lift my wrist away from my body. I’m careful to keep my breath from becoming a pant, even as my pulse quickens, but this takes much concentration. The body desires the convulsion the mind denies. There is no letting go here though. This orgasm is a controlled, measured, calculated experience.

I have masturbated in this way next to the sleeping bodies of all my serious, committed partners who came before my husband. In some cases, as expected, it was because I wanted more sex than they could give me. I’ve been called “insatiable” and “demanding” one too many times. But this has not always been the story. Yes, I have an incredibly high sex drive, but even in relationships where I have great sex multiple times a week my nighttime stealth for self-pleasure has persisted.

My college boyfriend, burgundy haired and tattooed, had the high sex drive typical of most nineteen-year-old males. We fucked all the time, but even still, I wanted more, something only I could give me. One afternoon, after he’d fallen into a deep post-sex slumber, I serviced myself with my second, third, and fourth orgasm beside him. That was the first time I’d experienced such a level of both secrecy and shame.

I made a promise to my husband and to myself, long before we were even wed, to be austerely honest. He knows I’ve been a compulsive masturbator since I was twelve years old. He knows about my extensive fluency in the hardcore categories of various porn sites. He knows about the bad habit I used to have of hooking up with not-so-nice men because they were available and I was bored — and that I rarely used protection with any of them. And that I believed, for a really long time, that my addiction made me a broken person, a disgusting person, a person unworthy of love. I told him these things from the start because I met him at a time in my life where I was ready and open for change. Because I liked him so much that I wanted to love him. Because I knew that the only way to love him, and be loved by him, was to be myself.

* * *

“What’s your favorite porn scene?”

The man who will become my husband in less than a year asks me this question as he lies naked and vulnerable beside me. We’ve just had sex and although I am naked too, it isn’t until this moment that I feel just as vulnerable as him. While it might seem absurd to some, I know immediately this is a moment of great significance for us. It is an opportunity to finally do things differently.

The possibilities run through my head.

I can describe something vanilla: This one where a busty blonde gets banged by her personal trainer. Or perhaps something a little more racy: These two hot teens swap their math teacher’s cum after he made them stay late in the classroom. Chances are he’ll get hard again and we’ll end up abandoning the conversation for a second round. These are harmless answers. Expected answers.

They’re also lies.

The possibility of revealing the actual truth not only makes me nervous, but also physically sick. I feel a constriction in the back of my throat, a flutter in my belly, a tremble in my extremities. After all, we’ve only been dating a couple of months and he doesn’t love me yet. If I tell him, will he ever?

“Why do you ask?” I reach for the sheet, damp with sweat, a tangle of 300-thread-count cotton across our limbs, and yank it up to cover my breasts.

“I don’t know,” he says. “Curiosity?” He turns over on his side and props his head up on his left hand. His green eyes are wide with wonder.

“Seems like a weird question.” I tuck the sheet into my armpits and scoot my body a little to the left so we’re no longer touching. The tone of my voice has become defensive and he can tell.

“It’s just that I usually pick the porn,” he explains. “Do you like what I choose?”

I see what he’s doing. He’s trying to be considerate since we just had sex while staring at the laptop screen after searching terms of his choosing: Latina, real tits, blow job, threesome.

Maybe he feels guilty for getting off to them instead of me, even though I’m the one who suggested we watch porn in the first place. Even though I’m always the one who suggests we watch porn while we have sex.

“Yeah, sure.” I look up at the ceiling. “They’re fine.”

“Are you sure?”

I wish he’d stop prying, but I realize something else is happening here. Not only is he trying to be considerate; he’s also trying to get to know me. The past couple of months has allowed us to cover most of the basics — what ended each of our most recent relationships, what our parents are like, what we hope to do with our lives in the next few years — but there’s still a longing for something deeper, and I can’t think of anything deeper than knowing a person’s favorite porn scene.

It can speak volumes. For one scene to stand out amongst the rest, when so many others are available, there has to be something below the surface. What maintains its appeal? What keeps a person returning in the deep, dark recesses of a lonely night? Perhaps the answers to these questions are a great source of shame. I never thought of revealing such answers to anybody, and especially not somebody like him, somebody I could really like. It seems far too risky, preposterous even.

It also seems necessary. Too many of my past relationships were doomed by my inability to tell the whole truth, to fully be myself. Now I have the opportunity to go there, and to say to a person, “This is who I am. Do you accept me?”

“Well, there’s this one gang bang,” I start, looking over at his face to see a reaction of surprise and interest register at once.

“Go on.”

I take a deep breath and proceed to tell him, first slowly, then progressively faster about the scene. Like a busted dam, I can hardly hold back the rush of descriptors fumbling from my mouth: “Two women in a warehouse. One dangling from a harness. The other just below her. Both are waiting to take on fifty horny men…” and on and on.

I watch his face the whole time, not pausing when his smile becomes a frown and his eyes squint as if it hurts to look at me.

“Afterward, the women exit the warehouse through a back door while the men applaud.”

For a long moment after I’ve finished talking, there is silence between us, but there is also a sense of relief on my part. I have revealed something so dark, so upsetting, so impacted in shame, and he hasn’t immediately disappeared. He is still here beside me, propped up on his left hand, naked and vulnerable, and so am I. He sees me and I see him seeing me and we are in new territory.

But then he says, “I kind of wish I hadn’t asked.” It’s all I need to hear to send me into tears. Not just tiny, embarrassed sobs, but humiliated wails. I have myself a tantrum. He is confused now as he pulls me close to him, laughing nervously at my abrupt shift in disposition. I try to pull the sheet completely over my head, but he pulls it back down and covers my face with apologetic kisses. He can’t possibly understand why I’m crying. He can’t possibly know what I’ve just revealed to him. “What’s going on? Baby, what’s wrong?”

And so I tell him.

* * *

Addiction to porn and masturbation is often grouped under general sex addiction because they all have to do with escape via titillation, pursuit and orgasm, but I’ve always felt more pathetic about my predilections. Going out and fucking — even someone you don’t really like — is wild, dangerous, but essentially social and shared. Though I had periods of promiscuity throughout my twenties, my biggest issue has always been with what I do alone.

There’s something so sad and humiliating in imagining a person locked away in a dark room, hot laptop balanced on chest, turning the volume down low, scrolling, scrolling, choosing, watching, escaping, coming.

And then realizing that person is me.

But my proclivity for solo pleasure has strong, stubborn roots. I lost my virginity to a water faucet when I was twelve years old. I have Adam Corolla and Dr. Drew to thank for this life-shaking experience; it was their late-night radio show “Loveline” on L.A.’s KROQ that served as my primary means of sex ed during my pre-teen years. This technique is one of the many things I learned, but I had a whole other kind of education going on, which had long filled my head with other ideas — sex is something that happens between a man and woman who love each other; masturbation is a sin. You know, your typical run-of-the-mill Catholic guilt stuff.

Just as oppressive as the Catholic guilt was my femininity. Girls weren’t talking about masturbation and sex. I had no company with whom to share my new activities and interests. And so this silence morphed into shame. I became a pervert, a loser, a sinner.

I tried to stop myself from taking long baths, from late-night undercover activities, from being alone too long, but the more I obsessed about stopping, the more I could not. I joined shame, secrecy and pleasure in a daily orgy, whether I was tired, bored, angry or sad. Whether I was single or coupled, it didn’t matter. Getting off required all of these components and I needed new, more extreme methods to stay engaged — more hours sucked away watching progressively harder porn like the warehouse video, complemented with dabbles in strip clubs, peep shows and shady massage parlors. It became impossible to get off during sex without fantasy, my body over-stimulated to numbness. I was irritable unless I was fucking or masturbating or planning to do either of these things. Life revolved around orgasm to the detriment of any kind of real progress in my professional or social existence.

I was out of control.

* * *

Little did I know that describing my favorite porn scene would be the first of many future admissions that would help peel back, layer by layer, a long and exhausting history of self loathing. My future husband and I quickly learned that watching porn during sex wasn’t a harmless kink for us; it was a method I’d long used to remain disconnected from my partners. It took much discipline and patience for us to expel it from our relationship altogether, though every now and then we slip up.

Talking about my habits led me to examine them, which ultimately led to my desire for change. Holding a secret for too long is like being unable to take a full breath. I didn’t want to feel this way anymore. I needed to share — often and fully — what had for too long been silenced in order to reclaim who I was underneath my addiction. I needed to breathe again.

I found relief in Sex and Love Addicts Anonymous meetings, seeing a therapist I trusted, attending personal development courses like the Hoffman Process and writing about my journey. I’ve managed to move away from porn for the most part, but when it comes to this addiction — to something I don’t have to seek out or purchase — control is like a wayward horse and my ass is always slipping off the saddle.

I constantly struggle with whether or not I should give up porn completely, but until I find a way to have some moderation with it, I avoid it as best I can. I wish I could just watch it occasionally, as some sort of supplement to my active sex life, but the whole ritual of watching porn is tangled up in too many other negative emotions. Watching porn takes me back to being that little girl alone in her bedroom, feeling ashamed and helpless to stop it. I can’t just watch one clip without needing to watch another after that, and another, until hours have passed and I’m back to binging every night.

If my husband leaves me alone all day and idleness leads me to watching porn, it’s the first thing I confess upon his return. Sometimes I don’t even have to say it. He can tell by my downturned eyes and my noticeable exhaustion. He shakes his head and takes me in his arms as I make another promise to try to leave it alone. When I visited a peep show on a recent work trip out of town, he seemed more amused than upset about the whole thing.

Unfortunately, I have yet to be as generous. If I find he’s been watching porn without me, when I’ve struggled to abstain for a stretch of time, I react with what might seem like unjustified rage. This frustration is only rooted in envy.

* * *

Masturbating beside my husband while he sleeps is the last secret I’ve kept from him. Although I’m beginning to fear that it’s actually just the latest secret. My resistance in telling him only proves how fragile recovery is. This week it’s masturbation. But maybe next week it’s back to porn binging. Or obsessive scrolling through Craigslist personals. Or lying about my whereabouts. And so forth. Abstaining from these habits, when so readily available, without abstaining from sexual pleasure completely, or the shame I’ve long bound to it, is a challenge I face daily.

That’s why I need to tell my husband.

Not because I need his permission, his forgiveness or to offer him some act of contrition. But because I need him to see me. To witness. The act of telling the truth, especially about something that makes us ache, is often the only absolution we need.

Want to know more? Check out our behind-the-scenes interview with Erica Garza on Continuing the Narrative.