Psychology

Call me Ishmael, dammit!

New research shows we can internalize fiction.

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When you look back on your life, you may recall slaying a white whale, or falling in love with a prepubescent Lolita, or tracking down the last of the Mohicans — but more likely you just overdosed on Melville, Nabokov or James Fenimore Cooper.

New research from the University of Washington shows that reading a story about a fictitious experience can alter people’s memories to the point that half believe the incident actually occurred in their own lives. The researchers were to report their findings Thursday at the American Psychological Society’s annual meeting in Denver.

In the two-year study on memory distortion, headed by doctoral candidate Jacqueline Pickrell and colleagues at UW, researchers used a questionnaire to screen a pool of college undergraduates about childhood experiences. Had they ever been lost in a shopping mall? Had they ever been picked on by a bully? Sixty-five students who said those two experiences “probably never happened” to them were asked to come back two weeks later for additional testing that the researchers disguised as a separate survey on reading comprehension.

This time participants were asked to read a short story — one that included details about a child getting lost in a mall or being bullied. The students were then called back to fill out the original questionnaire one day, eight days and 15 days after reading the story. A control group that was not exposed to the stories filled out the screening questionnaire along with the other subjects.

When retested, subjects who read one of the stories were far more likely to say they had experienced the fictional situation than students in the control group. On the Day 1 retest, 32 percent of the readers said the event had happened to them, compared to 24 percent of the controls. By Day 8 the numbers had increased to 50 percent of the readers and 27 percent of the controls. On Day 15, 39 percent of the readers and 29 percent of the controls said they had indeed experienced the event they previously denied experiencing.

“This is further evidence of the reconstructive nature of memory,” Pickrell says, speaking by cell phone en route to Denver. “You don’t realize it, but you’re incorporating information all the time. Memory takes bits and pieces of current events and incorporates them into our past. We’re constantly adding new information to reconstruct our autobiographical history.”

So what do these survey results say about cases of “recovered memory” in which patients suddenly recall, after decades of apparent forgetfulness — and often at the suggestion of their therapists — traumatic episodes from childhood? “Changing belief is the first step to creating false memory,” Pickrell says. “We’re not implanting false events. We’ve demonstrated that you don’t even have to be that suggestive.”

The study revealed another surprise. The subjects were randomly assigned to read same-sex or opposite-sex versions of the two stories, and results showed that readers were more likely to come to believe that fictional incidents had happened to them when they read a story with a protagonist of the opposite sex than one with a same-sex protagonist.

Pickrell and her colleagues were a little baffled. “Perhaps if you’re a woman reading about a girl you don’t need to process it as much to assimilate the information. For a man, there’s more processing” so the incident is more likely to become distorted in the reader’s consciousness. But, Pickrell admits, that’s only a guess. “We’re just speculating,” she says.

You can’t believe everything you read — everyone knows that. But, as this new research suggests, you can’t always believe everything you believe, either.

Jon Bowen is a frequent contributor to Salon.

We were breast-fed really late

My mother continued to let us touch her for years after feeding stopped, and now it feels creepy and revolting

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We were breast-fed really late (Credit: Zach Trenholm/Salon)

Dear Cary,

I don’t know how to put this any way but bluntly, so here goes. My mom let me and my brother breast-feed really, really late– until we were 4 or 5. She let us touch and play with her breasts for years after that. She never told us what sex was, and later when I found out for myself, my body changing on its own, I felt revulsion at the all-too-recent memories of how I touched, and wanted to touch, my own mother. I hated that she hadn’t stopped me.

Now I’m 18 and have a little sister. Just like with me and my older brother, Mom breast-fed her really late, and now at 9 years old, my sister still likes to feel my mother’s breasts. My sister is my mom’s last child, and so in several areas Mom persists in regarding her as a baby.

I try to understand my mom. I realize the idea of her last kid growing up must be scary and depressing. But this behavior is disgusting to watch or even to know it is going on when you’re not there. Additionally, it’s delusional and perverse to excuse, and even encourage, such behavior in a growing young woman on the grounds that she’s an infant. Who knows why I wanted, and now my sister wants, to touch my mother’s breasts at age 9? Certainly not because we wanted to breast-feed. But Mom’s so convinced of my sister’s innocence that she refuses to consider she could be encouraging inappropriate impulses that my sister is too unaware to understand.

I know those impulses are there. It happened to me. But for obvious reasons, I can’t tell my mother that.

What I do tell her? That I’m grossed out and that my sister is too old? Mom won’t listen. My sister, of course, listens to Mom over me and gets mad at me for saying anything. So I’m at a loss for what to do, and I don’t want my sister to turn out with the revulsion of her own memories and the confusion of her feelings that I suffered.

I’m so disgusted it’s keeping me up at night. I’m angry and stressed.

What should I do?

Revolted

Dear Revolted,

I want you to consult with a psychotherapist. Look for someone who has helped others with experiences similar to yours.

You could read and study about this. It wouldn’t hurt to get a basic understanding of child development and how such experiences can later affect us in troubling and unexpected ways. But knowledge alone will not be enough to avoid the later effects of this early experience.

The best thing you can do for yourself now is to find a therapist who can respond to you in a clear, responsible and nonjudgmental way and sit with you, week after week, as you tell your story. That would also be the best person to advise you on how to talk with your mom and your sister should you choose to do so at some point.

You are in a great situation right now. You know what happened, and it is still fresh. You have not distorted what happened or rationalized it or put it out of your mind. So this is the time to act.

You will meet obstacles in your search for the right psychotherapist. So consider this a quest of monumental importance. It may be the most important thing you ever do — more important than your education or your later occupation.

Feelings of guilt and self-hatred may arise. As such feelings come up, remind yourself that they are not helpful. They are, in fact, the direct result of this experience that has left you feeling troubled and conflicted.

You may also hear voices telling you that talking about it is taboo or will expose others to harm. That is why the confidential setting of a psychotherapist’s office is the ideal space in which to tell your story. You will not be “outing” your mother or have to confront her; you will not be causing family conflict. All you will be doing in therapy is resuming, as a slightly older person, the course of development that was sidetracked at an early age by these unusual experiences.

You have the chance to live a happy, productive life, unburdened by this. Moreover, once you attain some understanding of this, you can be of use to others who have had similar experiences.

Now, I believe that a rich country like ours ought to provide for its people in certain basic ways. One of these ways is in medical care. Psychotherapy is a kind of medical care. So I believe that high-quality psychotherapy and psychiatric care ought to be readily available to people of all income levels.

This is not currently the case in America. Instead, we  must be creative, energetic and insistent to get the care we need. This is cruelly paradoxical, because it is precisely at moments when we are most burdened that we are called upon to be entrepreneurial and creative in our search for care.

You will need strength and resilience as you search for the right therapist. To keep on your quest you may need to repeat to yourself that this is indeed a life-or-death matter. People who have such experiences can later fall into depression, suicide and addiction. We don’t want that to happen to you.

Some people are uncomfortable with this topic, so they snicker and make childish jokes. Beware of shaming remarks. It would be great if they could just slide off your back, but the truth is that such remarks often do sting. Do not pretend that such remarks are not hurtful. Instead, feel the sting and wait for it to subside, like the sting of a bee. Accept that the world has many cruel and ignorant people in it, but you can survive and live a happy life.

Don’t listen to anyone who says to just get over it. We humans don’t often just “get over” stuff like this. Not without help. So get help.

You can find the help you need, and you deserve it. It’s not your fault what happened when you were just a kid.

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Cary Tennis

Cary Tennis writes Salon's advice column, leads writing workshops and creative getaways, publishes books, writes an occasional newsletter and tweets as @carytennis.

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Life is empty at the top

I've won the game. Now what?

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Life is empty at the top (Credit: Zach Trenholm/Salon)

Dear Cary,

I’m not exactly sure what’s wrong with me. I’m not yet 30 and have a great job, a great apartment and the freedom to do whatever I want whenever I want. I’m debt-free, travel a lot, eat out for lunch and dinner most days and buy whatever I want. I should point out that I live abroad, having moved thousands of miles away from home after college to chase something. To make a long story short, I started from scratch, built a life, worked my way up and through three jobs, with my eye always on something bigger. I built up massive credit card debt in the process, but that’s all paid off now. I’m a totally free man. In a way, I’ve achieved everything I had been working to obtain. My work is interesting and fast-paced. Family and friends admire me. I live in an exotic locale as an expat. I honestly don’t know many other people my age who are as advanced or comfortable in their careers. So many people I went to college with are still making $10 an hour, interning, or even living with their parents, not including those who are still in school pursuing a second or third advanced degree! I’m good-looking and healthy.

My problem is that I wouldn’t get out of bed most mornings if I didn’t have to get up and go to work. I’m terribly bored. People tell me to just switch things up, meet new people, go on dates … But it doesn’t quite work that way. Because of where I live, I’m really limited in terms of the people I’m able to meet and how much I can just switch things up. I have to worry about security, and it’s really not like I can just go to a bar and meet someone new or go explore a new part of the city. I’m pretty much limited to the expat circles here. And most people are older than me and with kids and dogs and houses and mortgages. I’ve given up on the thought of finding a romantic partner. I’ve been through my share of bad relationships in the past, and honestly I am fine on my own and probably better off. I’m not looking for drama or to complicate my life. I go to the gym, I cook, I watch movies, I buy crap … But every day is the same, and it’s starting to get terribly boring. Maybe I’m too young to have such a settled life. I’m not sure. I’m not exactly dying to be poor again or have so much uncertainty in my life. I enjoy my job and like the company and am grateful for where I am. But is this all I can expect — 30 to 40 years of repetitive days and then retirement? I have it better than most and so much freedom at the moment. But most of my freedom is wasted sleeping or watching TV. How do I find meaning now that everything else is all lined up and in good order?

I’ve been thinking about death lately for some reason unclear to me. It all started a couple of months ago when I was sitting in a restaurant with a friend eating a wonderful dinner and it just hit me, this great emptiness. Stuffing my face with food, having an amazing conversation with a close friend who I hadn’t seen in over two years. It wasn’t quite fear but something close: mostly just a great emptiness. I couldn’t eat after that. My night was ruined. And ever since that night I can’t shake these thoughts. I’ve been buying books about death, the afterlife (and whether it exists or not), the occult, and science. I’ve still got a lot of reading left to do. But I’ve been feeling kind of an emptiness. Hopefully it’s just the way I’ve been messing up my body with alcohol, cigarettes and nicotine patches. I quit smoking and I start smoking. I quit and I start. Over and over again. It can’t be good. The older I get the more it seems that loss is becoming a theme of life. First you lose your grandparents, then you lose your youth, then you lose your parents, and then you lose your life. It all goes according to plan. That is the best we can hope for. So how can we live with loss? People say they enjoy getting older, but I wish I could freeze time right now. Good job, money, health, looks, everything. So why am I still so unsatisfied? Why can’t I just enjoy this moment? I don’t know. I want to live forever. And the realization that I won’t is kind of preventing me from living in the moment because it all seems a little worthless — if I’m in an existential mood.

I have happier days when I feel connected to God and all that crap. But this is the general state of my thoughts at the moment.

Everyone wants to be special and do something great that no one else has done before and I’m coming to the realization that maybe I’m not special, that maybe I’m just normal. It’s kind of sobering. So I told myself that my purpose right now is going to just be the best that I can be. Get back in shape. Do good work. Be a good son and brother. Be a good friend. Take care of myself. Get off the booze and cigarettes. I tell myself this every day and then I end up out on the balcony drinking a vodka tonic with a smoke. Why do I sabotage myself? It seems so easy. And it is. I just want to get out of this funk. And I tell myself that everything else will just fall into place.

Where should I start?

Bored With Boredom

Dear Bored With Boredom,

You ask where you should start, but you have already started. You have had a moment of awakening.

I wonder what else happened when you were having dinner, and whom you were having dinner with, and what you were talking about, and how all that was connected to your moment of awakening. Perhaps something you were talking about triggered this. Or perhaps it was waiting, like a raindrop waits on the rim of a roof’s overhang until too plump to stay and falls to the tablecloth.

As you go through life now, you will want to pay attention to what you are doing and where you are when you feel this existential loneliness most acutely. That is because the world is speaking to you through this loneliness. It has been speaking to you all along, actually. It has already told you that certain riches are easy to acquire. Now it is telling you that other riches are harder. It has told you that you can easily win certain games. Now it is telling you that winning those games only gives you part of what you need. Now the world is telling you that underneath your success and physical satisfaction is a great emptiness.

It is not just your personal emptiness. It’s not like you did something wrong, like you should be full and you’ve made some mistake that made you empty. It is the world’s own emptiness. We’re all empty. The world is empty. It’s been like this for all of time. You’re just noticing it. You just happened to look down and gasp at the distance. You got a little vertigo, naturally. But this is an eternal condition — the condition that drives the saints and drives the poets and drives us insane if we don’t make friends with it.

There is nothing to worry about. This is how life is — we go about our business at death’s elbow, suspended above an infinite chasm. Here we are, about to be transformed into something else.

One way to quit smoking and drinking is to spend more time meditating. Just sit. Breathe from some place behind your navel. Relinquish all your thoughts and beliefs about how things are. Let this new inkling of the empty universe occupy your mind. Let your mind expand into this vast new space. Do not fear it. If memories from childhood rush into the void, do not fear them. Nothing can happen to you. You are blessed. You have been brought here for a reason. This reason may be kept secret from you. That is part of the game. But there is a reason. It will be revealed slowly, hint by hint.

Joy is a messenger. You will know what to do next by knowing what brings you joy. Wait to feel this joy. Follow it. It will lead you where you need to go. It might lead you to a sailboat or to a graveyard. Follow it.

The other stuff, don’t worry too much about it. If you are reading books about death, be sure to read Ernest Becker’s “Denial of Death.” It’s a good book. And find a teacher, someone trained in modern psychotherapy, someone who seems to know something.

You may actively seek this teacher, or this teacher may come into your life seemingly out of nowhere — like that raindrop, like that moment of awakening — to teach you what you need to do next. Either way, some trust will be required. You will not be in control of this next chapter. You won’t be the world-beating superhero in this next chapter. That’s OK. You’re bored being the superhero anyway. Seriously: This will happen soon. You are obviously ready. Watch for it. Watch for the person who is going to come into your life and change everything. Be ready. Be receptive.  It will happen. This, too, is part of your education.

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Cary Tennis

Cary Tennis writes Salon's advice column, leads writing workshops and creative getaways, publishes books, writes an occasional newsletter and tweets as @carytennis.

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My deathbed second thoughts

After my mother's death, I dedicated my life to helping people die on their own terms. Then my father got sick

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My deathbed second thoughts (Credit: Iwona Grodzka via Shutterstock)
This article is adapted from the new book "No One Has to Die Alone."

I walk into our kitchen. My mother is standing at the kitchen sink, whistling to the red cardinals in the plumeria tree. As I hurry to slip past her, she turns and looks at me as though her gaze could wrap its arms around me. “I love you so much,” she says softly. I roll my eyes and tsk, responding as an independent 13-year-old striking out to sever the umbilical cord. My mother is cut down to silence.

Without warning, a week later my 8-year-old brother wakes me in the morning saying, “Mommy’s sick, and she’s throwing up.” I respond as I think she would and bring her a tray with cinnamon-sugar toast and orange juice. I tell her I will take my brothers down to the playground so she can sleep. When we return three hours later, her bed is empty. There is a note from a neighbor that she has taken my mother to the hospital. A neighbor comes over to stay with us while our father is with our mother in the hospital long into the night. It is a long, lonely day and night without answers. I write a letter to God trying to describe my confusion and asking God to let her come home.

The next day my grandparents fly in from California to visit their daughter and grandchildren. It feels like a vacuum in the house: the air is still, people move slowly, and no one speaks about what is happening. I am too afraid to ask questions. My father and grandparents go to the hospital and tell us it is better that we wait at home. That evening my grandmother bursts into the living room, hysterical, and I cannot understand what she is saying. My grandfather follows her into the house, comes to me, and holds me. “Your mother took a turn for the worse,” he says gently. At least she’s not dead, I say silently to myself. And then he follows with, “She died tonight.”

My parents had not talked to my two younger brothers and me about the Guillain-Barre syndrome that had already cut short the lives of six out of eight patients diagnosed in our state. We did not understand what the illness was or that it could cause my mother’s death. We did not know about the unpredictable and intractable pain associated with the neurological illness, and why my mother did not get out of bed for days at a time as she used alcohol to cope with her fear and uncertain future. We did not see our mother leave her bed for the hospital, and in an effort to spare us, we were not allowed to visit her. In my mind, she was home one moment and dead the next. No one was home to comfort three young children. I was the oldest, but I did not feel that I had the knowledge or skills to help my younger brothers. No one was there to help me.

In my confused 13-year-old mind, I etched a story that would solidify over the next years, as though carved into rock: I did not tell my mother that I loved her that one day, and she died without me ever telling her that she was loved. As a young girl and for many years afterward, I thought I could have saved my mother’s life if I had not been so selfish, if I had just given her the little affection she wanted. In my limited, self-centered view of the world, I — rather than illness — had caused her death.

No one spoke about her death, what caused it, or how she died. I did not know what caused her to die. Only after her death did I find a newspaper article tucked away in her jewelry case that described the rare diagnosis of Guillain-Barre syndrome. I could not risk asking questions or sharing my pain for fear that exposing my grief would bring a tsunami of pain to my father. I was afraid that the rest of my family might die too, but talking about or showing my grief would mean rocking the boat and risking whatever stability was left in my life. I did not have words for what I was feeling. I had not seen anyone live through grief, and I did not know if I could survive the pain of what I was feeling. I was alone with my grief, and I could not understand how deeply my misinterpretation of her unexpected death would wound me for a long, long time.

I asked to go back to school just three days later, hoping I could hide in the routine of classes and my commitment to good grades. I did not know any others my age who had lost a parent, and I felt humiliated by the looks of pity and the whispers around me. No one knew what to say, and everyone was visibly uncomfortable around me. I was embarrassed, thinking they could see my inner anguish, ashamed that my feelings made me naked. But one classmate wrote me a note, and to this day, I will never forget her courageous act of reaching out and how her simple words — I’m sorry about your mother; you must feel so lost — comforted me in a way my mother would have if she had survived. My young friend risked saying the wrong thing, as we are all afraid we might, in order to acknowledge my new world that I was trying so desperately to navigate.

The greatest act of kindness and compassion would have been for someone to ask me “What do you need to know?” and then encouraged an open, on-going discussion of the facts and my feelings. What happened? When did she die? What caused her death? Who was with her? Was it my fault? I needed information to sort through the reality of her death. I needed someone who could explain what happened so I did not fill in the blanks with my worst fantasies. In the absence of real information, I believed she died alone. I believed I could have stopped it. I believed I was to blame.

I could not be there for my mother, and my grief reflected that regret. I would use the rest of my life to make sure it would not happen again. I would learn everything I could about what a dying person needs; I would be with others as they were dying. I would study everything I could about healthy grief so others would not be alone and confused in their bereavement as I had been. I would learn what I had not known so I could support others.

One of my greatest teachers came in the form of an accident, an experience that changed my assumptions and beliefs. When I was 29 years old, I came to know death from the inside looking out. I had a classic near-death experience during a routine dental procedure. I lost consciousness from a reaction to nitrous oxide while in the dentist’s chair. The incident changed my assumptions about life, death, and consciousness, and it gave me a sense of peace about death and around others who were dying.

My personal experience with death reinforced my conviction to assist others who were dying, companioning them like a midwife. I also believed I could help their loved ones experience a gentler, healthier grief. So I worked in several hospices around the country as we moved frequently for my husband’s job. I sat with over five hundred people as they died, and they told me what mattered to them. In 1994, I formalized my study of death, dying, and grief by returning to a doctoral program and specializing in thanatology, the study of death and dying. I also worked with children in a pediatric AIDS ward who taught me about their lack of fear and acceptance of after-death communication. I spoke at conferences and within university programs trying to dispel the myths and fears of death, and teaching others how to care for the dying and the bereaved.

All of this may sound like noble work, but I now know that it was a self-serving quest. I never again wanted to be unprepared. I wanted to be ready and able to respond during what I knew would eventually come: my father’s death. I wanted to manage my lack of control, to bring comfort to my own discomfort. I never again wanted to feel the regret of not responding or not being able to care for a loved one who was dying.

So in July 2003, when my father told me that he had stage IV lung cancer, I felt ready. I had been preparing for this journey since my mother’s death. The gaping wound of her death had left an ugly scar, so my healing was to learn enough about death and dying so that I could respond and change the experience from a tragedy into an opportunity to serve and love.

I knew I would respond immediately and commit fully to assisting my father. I knew that this was the opportunity for which I had studied and worked my whole life. I canceled the Death & Dying courses I was teaching at the university and closed my private psychotherapy practice. I told my father I would fly to him in Hawaii within days, and I told my husband I would be gone for several months.

Unlike during my mother’s death, I now had a toolkit of skills, competencies, and information. I had my conviction to be present with him, no matter how painful his illness became. I would not let my grief overshadow his needs, but I also would not separate him from the intimacy of my feelings. My promise to both of us was to be his companion so he would not feel alone and dead before his time. I imagined myself the safe haven, the cocoon, where he could go into metamorphosis and emerge into his next adventure.

I went to him with my belief that there is no right way to die; there is only each person’s wish. In death, as in life, each person gets one vote. My guiding principle would be: one life, one death, one vote. I did not have the right to usurp his vote and take away the power of choice about how he lived and how he died. None of us has the right to impose a formula, a prescription, or an agenda for our version of another’s good death. He was fortunate enough to be given some time to plan; he had the lucidity, the resources, and the support to follow through with his wishes. I would help him to be the author of his death, as he had been author of his life.

I began our daily rituals to soothe his discomforts. We reviewed his life in stories and scrapbooks; I asked him about the highlights of his life and what he believed his legacy would be. I asked him what he wanted to do before he died and helped him write his bucket list, planning excursions to complete them. We wrote his obituary and talked about where to spread his ashes. I arranged visits for the friends he wanted to see and served as timekeeper to gently escort them out when I sensed he was tired. Each night I massaged and moisturized his cracked, thin skin. I took him to his doctor’s appointments and asked the questions that he would not because he was of the generation that often defers to medical authorities. I clarified what the doctor said, and I made sure Dad understood. And when the doctor suggested daily chemotherapy, I asked what my father would not: “What might be the pain, and what will he gain?” Dad decided that the discomfort of traveling and the potential side effects were not worth the extra two weeks of living it might afford him. “You can have what you want,” I promised. And so I took him home and arranged for hospice services.

Twelve days after I arrived, he had little appetite but said he wanted Hawaiian food for dinner. He nibbled but was agitated and restless. I gave him some of the morphine that the hospice had left for him, and we went through our routine of lotion and massage, a talk about our day together, and a goodnight kiss. I stayed by his side like a sentry in case he woke disoriented from the medication.

When he woke up the next morning, he grabbed at the oxygen tube running to his nose, connecting life to his shriveling lungs. He pulled the tube out and slid the strap off from around his head.

“Dad, you need the oxygen,” I said. Firmly and succinctly, he responded, “No more.” I checked my understanding and said, “Dad, if you take out the oxygen tubes, you will die soon. Is that what you want?” “No more,” he repeated.

I was sure, because we had spoken directly about his wishes. He did not want to live a life void of adventure and choice. He did not want to be a burden, and he was ready to go. This was the last choice he could make, and my gift was to support him, rather than to challenge him. I was there to be with him as he pushed off on his last voyage.

I put the tube on the floor and turned the oxygen off. I curled up next to him, cradled his head, and spoke softly to him: “I love you. Thank you. I will never forget you.” Softly and gently, and with a lot of space between these truths, I repeated what I needed to send him off with. I sang a favorite Hawaiian song. His eyes were closed. His breathing was slow and shallow for an hour as he lay in my arms. There was a light breeze with the scent of plumeria.

Suddenly, his eyes opened fully. He stared, without blinking, up into the corner of the ceiling. I followed his eyes and heard him whisper, “Duchess,” his nickname for my mother. I whispered back, “Yes. It’s her. Of course she is here. Go to her. We will be okay. You can go now, Dad.” His eyes closed. And within a few minutes, his breathing stopped.

I sobbed and sank down onto his chest. In that moment, I was selfish and wanted him back. In truth, I was thinking only of myself. I had thought I was prepared; I had rehearsed what this moment might be like, but in truth, we are never ready and we always want more time with someone we love. And then in the next moment, I remembered what I had seen and what I knew to be true. I knew where he was; I knew he was whole and healed; I knew he was not alone. I knew, too, that I was not alone. Love trumps death.

Excerpted with permission from “No One Has to Die Alone.” Courtesy of Beyond Words, an imprint of Atria Books/Simon & Schuster. 

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Lani Leary PhD is the author of the international bestselling audiotape "Healing Hands" and served as director of mental health services at Whitman Walker AIDS clinic and as professor of Death Studies at George Mason University.

Look at my scars

The remnants of my own illness have taught me that when it comes to difference, don't stare -- but don't turn away

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Look at my scars (Credit: Natalia Klenova via Shutterstock)

“Do I freak you out?” she had asked.

It was the kind of question adults rarely pose. But Abigail (a pseudonym, like some other names in this piece) is 8, and she doesn’t have any qualms about being direct. The person she was asking, my daughter Beatrice, likewise didn’t hesitate in her reply.

Abigail is new to our school this year. She is in every way a typical second-grader, except that she was born without a left hand. It’s a trait that makes her undeniably noticeable, and so, sometimes, people ask questions. Sometimes Abigail has questions of her own. Sometimes, when you’re different, you want to know.

When Bea told me what Abigail had inquired about a few weeks ago, I’d winced a little, wondering how my child had answered. Had she passed whatever test Abigail was giving? I know how frank Bea can be, how she walks behind me when we’re out in public, checking whether the shiny, taut expanse of bare skin on my scalp is visible. “Mom, your bald spot,” she’ll say when we’re in a restaurant, fussing with locks to try to hide the five-centimeter circle where, a year and a half ago, I had surgery to remove cancer.

I know that Abigail’s question haunts many of us who are physically different, in ways both small and large, either by birth or circumstance. It plagues my friend with accident scars on his legs, who’s already nervous about summertime and exposing his flesh at the beach this year. Maybe it’s a small yet indelible birthmark on the chin. Or it’s a big burn. Or a missing limb. Does this make you want to look, or want to look away? Do we make you uncomfortable? Do we freak you out?

“It’s a thing that has to get explained,” says Natalie, a New York executive who’s had three serious melanoma surgeries and lives with ongoing psoriasis lesions. “For me, the anticipation of that is hard. I think people want to distance themselves from someone who’s had a traumatic event. Somehow you wind up having to reassure them that you’re not contagious, that they’ll be OK.”

Though she tries to be “very open about my illness, because I want people to get it,” Natalie admits she has nevertheless “some really upset moments” of unasked for attention. “I once had someone literally cross the road to ask what was wrong with my legs,” she says. “I was feeling really proud of myself for being brave enough to wear the skirt. And this woman came along and destroyed it.” She adds, however, “I don’t feel sorry for myself, and I don’t wear this as a badge. I just want to be looked at as the successful, independent woman I am — but I understand that some people can’t do it.”

It’s true that some people can’t, and there’s loss in there. I used to have a friend who liked taking pictures of his buddies, including me – right up until my diagnosis and my relatively minor disfigurement. Then he never took another photograph of me again. I wonder if I freaked him out.

My friend Frank, a West Coast entrepreneur, understands. A few years ago, Frank had radical surgery for bladder cancer that left him with what he calls a “Guinness Book of World Records scar” that starts at his sternum, loops around, and ends at his pubic bone. He also has a partial hernia that leaves him, in his word, “lumpy” under a shirt.

“I get a lot of people staring. I’m used to it,” he says. “It usually doesn’t bother me. I’m just a little self-conscious when people are peeking out the corner of their eyes in the locker room.” And, he recalls, “one time my wife and I were at Caesar’s Palace lying out in the super-bright, crystal-clear Vegas sun, and this woman next to us asked, ‘What happened to your stomach?’ She was pretty horrified when I told her.”

He’s still sometimes horrified himself. “I look at myself every morning, and I think of all the horrible shit that I’ve been through because of this disease,” he tells me. But when he looks in the mirror, he also sees a mark of survival. “I’m working out and riding my bike to train, and if that doesn’t tell you how I’m doing, go ahead and ask me. I don’t think I look that bizarre. I think I look like a guy who’s had major abdominal surgery.”

As Frank knows, when you’ve been through something life-altering, the first person you have to get to accept your look is yourself. “The first time I saw myself afterward, I thought, That looks very interesting,” says Johan Otter. Johan is a master of understatement. Seven years ago, Johan was hiking with his daughter in Glacier National Park when he was mauled by a grizzly bear. His scalp was torn off; his eye was clawed. He had to wear a halo brace for 12 weeks and go through multiple grafts and surgeries to recover. And then, he says, he had to learn to “push through” his first time out in public again.

“You get used to it,” he says. Besides, he jokes, “I never have a bad hair day.” Otter admits he can still be somewhat surprising to strangers. “Once at Costco this woman said, ‘Oh my God, what happened to your head?’” he recalls. But though he admits, “I’m a vain person just like anybody else,” Otter says that “I’m always extremely proud of my scars. When you go through something like this, people see you with your true self. You learn that what matters is what’s inside.”

It’s not always easy in our perfection-driven culture — where a weight gain of five pounds can be treated as a life crisis and toothpaste brands wage war on dingy teeth and a “puffy face” means you’re no longer considered “pretty” – to believe that within battle scars and what others would call abnormalities, there is a raging, painful exquisiteness. It’s often hard to feel the sideways glances and puzzled stares. But it’s harder still to be overlooked entirely, to feel like the remnants of the trials we’ve endured are the things that make others unable to look at us. We want to be looked at not with pity, not with fear, not with morbid curiosity. Simply with clear and open eyes.

So when Bea told me her friend Abigail wanted to know if she was freaking her out, I hoped Bea had answered honestly. More than that, I hoped she answered kindly. I hoped she didn’t pretend she’d never noticed Abigail’s missing hand, or changed the subject altogether. “What did you say?” I asked her nervously. “I told her no,” she shrugged. “I said, ‘Why would I be freaked? I love you.’” And then I exhaled.

I know life for Abigail – and Natalie and Johan and Frank and everybody else wounded or scarred or born different — is more complicated than that. The things that make us stand out in the crowd define us in a million little ways. They can remind us of the most dramatic, heroic moments of our lives, and of every small indignity and cruelty that has happened since. But what Bea and Abigail got to in the span of one recess period was that life isn’t about seeing past each other’s imperfections. It’s about being unafraid to look at them directly. Because that’s where the love is — in the cracks and the sufferings and the challenges. Life isn’t flawless. But it can be very, very beautiful. That day at recess, Bea told me, she had kissed Abigail, right on the place where her arm stops at the wrist. And they played together until the bell rang, and it was time to go back to class.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

I’m the meltdown master — I panic constantly

Since I can't afford health insurance or therapy, how do I get over my anxiety attacks?

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I'm the meltdown master -- I panic constantly (Credit: Zach Trenholm/Salon)

Hey, Cary,

I have a problem with nerves, but no health insurance and very little money to spare for therapy, even on a sliding scale, so maybe you can give me some free insights.

Whenever I end up in any kind of remotely adversarial or stressful situation — and by adversarial, I mean something as minor as having to say no to someone for any reason — I find myself having a strong physical response.  I don’t know if you could quite call it a panic attack, but my heart starts pounding, my hands and voice start shaking, and I start to sweat profusely.

No matter how many breathing exercises I do or how hard I push myself through it or how much I try to coach myself through it mentally, this physical response just keeps happening, and it doesn’t ever seem to weaken.  If anything, the more I push myself, the worse it gets.  It’s like my fear of my own response plus the response itself combine to form this infinite feedback loop of crazy.

You can see how this might be a problem if, every time I try to be assertive or resolve something, I end up a damp, quivering, wreck and have to go sit down for a while and have a drink of water.  And maybe a shower.

It’s not like I’m even trying to do superhuman feats here.  I’m not running into burning buildings and saving lives.  I’m just trying to function like a normal person.  I’m just trying to stand up for myself without caving and resolve the little snags that life throws out at me.

Here’s a recent example, to give you an idea:

I had been sending regular payments on my car loan when I got a nasty-gram accusing me of not paying for a few months.  Turns out they’d gotten the money but someone somewhere had failed to apply it to my account, the fact that I’d paid it online through their system notwithstanding.  

We went back and forth, I tried to climb the levels of customer service to someone who had the power to do something, I faxed copies of my bank statements, they couldn’t find the faxes, I re-sent them, I argued, I refuse to send further payments while they tried to find the others (because being out twice the money for their mistake struck me as a bad thing, and out of my budget besides), and during every phone call I not only had to take an hour or so to do some yoga-breathing and self-coaching to talk myself into getting my papers together and picking up the phone, but I spent every phone call with my forehead resting against the windpane, trying surreptitiously to suck air at every pause in the conversation because I felt like I couldn’t quite breathe.  And then I had to go have a lie-down because I felt dizzy.

These kinds of things should not be such a big, nerve-wracking deal for me.  And yet they are.

Nor is this attention-getting in a “woe is me, I’m so fragile” kind of way.  I’ve never spoken about this to anyone before.  It’s too embarrassing.  I just try to cover it as best I can and truck on.  If somebody notices something and mentions it, I try to bluff and pass it off as too much coffee or too little sleep, or the classic, “I took the stairs and I’m a little winded.”

It probably doesn’t help that I’m the baby of the family, the only daughter, and humiliatingly aware of just how much my parents have sheltered me and tried to take care of things for me all my life.  Of all of my siblings, I was the one who took the longest to get through college (with failures and changes of major along the way), the longest to find a job, the longest to leave home, and I still lean on my parents more than I think I should.  It took me until my mid-20s to realize it, and at 31 I’m still in the process of trying to fix it.

The weird thing is that they don’t even seem to notice or mind.  They’re not controlling, and they unquestioningly allow me space when I take it.  It’s just that their default M.O. seems to be, “Take care of the baby, she needs extra help.”  I appreciate the sentiment, but not necessarily the end result, which is that I have no idea how to deal with things if left on my own.

I’ve been striking out and trying to be a more competent, independent human being, but while I’ve been coping, it’s been slow going and marred with setbacks.  It’s also made my complete lack of organizational or time or life management skills painfully apparent.  My little meltdowns seem to be part and parcel of that.

So far I’ve coped with a combination of (really unhealthy) conflict avoidance and sheer bloody-mindedness.  In other words, I try to force myself to push through it and not to dwell on it.  Sometimes I succeed.  Sometimes I just duck the confrontation because I just can’t face both the confrontation AND my physical response to it.  This happens more often than not, though less often these days, I suppose.  When I do push through successfully, any pride I feel at my success is always secondary to the embarrassment, frustration and exhaustion.  It doesn’t change.  I just get better at pretending to ignore it.

Still, not only does this thing make it so much harder to handle any given situation due to being in a mild panic all the damned time, but I can’t help but think my agitation is obvious, which isn’t great if you’re trying to be firm and stand your ground against someone who’s trying to bully you.  And, yes, I’ve had a lot of trouble with bullies in my time.  Middle school was hell.  I was a shy and awkward kid to start with, and didn’t know how to stand up for myself, and a few years of bullying didn’t make me find my backbone, they just buried it so deeply that I can hardly find it anymore.

I try not to think of myself as neurotic or a fundamentally weak-willed individual, but this whole situation seems to disprove that belief, and it’s disheartening.

Oh, and here’s the funny thing: it stops happening when things get serious.  

Examples:

My grandmother had a major stroke and died after a handful of days in the hospital, and I somehow managed to coordinate family and manage communications so Mom didn’t have to, clean my parents’ house for them, arrange food and find hotels for everyone who visited, and so forth.  Picking up the phone ceased to be a major problem for the duration, to resume being a major problem as soon as the crisis had passed.

I once fished a nephew out of the pool he’d fallen into and did CPR *EVEN THOUGH JUST FORCING MYSELF TO GO THE CPR CLASS WAS A MAJOR EVENT I HAD A MINOR PANIC ATTACK OVER.  You heard that right: I did actual CPR with more serenity and self-possession than I did fake CPR.  And I have no clue how I did that.  No.  Fucking.  Clue.  

Another time I found my then-boyfriend cornered in the backyard by a neighbor’s very aggressive dog, and it’s like a sane person took over my body, grabbed a stick, ran up, and managed to scare it off.  It left.  I closed the gate behind it and called the police.  HE was more freaked out about the whole event than I was.  I was just like, “Meh.  You OK?  OK.  Let’s go have a beer.  You look a little pale.”  

And my hands, my traitorous hands that shake like leaves in just about any other situation, were steady the whole time.

It’s like, in a crisis, the usual me unfolds, in some bizarre kind of reverse mental origami, into Super Me.

But the rest of the time I can’t even balance my budget, apply for a job, go out in a crowd, or say boo to a goose without feeling like I need a sedative.

It’s like my own brain is playing some twisted joke on me, and I can’t figure out how to make it stop.

Help me.  This feels a lot like insanity.

Meltdown Master

Dear Meltdown Master,

I’m going to do something I don’t usually do. I’m not going to try to dazzle you with prose. I’m going to write at some length, not editing myself too much, but not going for anything poetic-sounding. I’m going to write more in a talking style, and just give you some information and ideas. I hope that will be OK with you and the rest of the readers.

I have to say right off that I have no clinical training in psychology so when I say maybe you have this or maybe you have that, it’s like somebody who lives up the street saying it. Except I’ve done some reading. That’s all. Oh, and I have had some of these things myself. That too.

I do suggest you see a professional. But since you say you can’t see a professional, the next best thing is to learn as much as you can and then take steps to help yourself.

Here is the crucial thing. Gathering information will not create behavior change. Only doing things works. I have survived alcoholism, drug addiction, cancer, depression and panic attacks. How I got better was I found out what worked and then I did as suggested. I used cognitive behavioral therapy to get out of my depression back in the 1990s by finding a therapist and doing what he suggested — which was to read “Feeling Good” by Dr. David Burns and do the exercises in the book. It worked. Likewise, to stop  drinking I had to find a group of people who had been able to stop drinking, and learn how they had done it, and do what they had done.

So learning about your condition is important. But it is only part of the cure. You must take the necessary actions.

The Anxiety Disorders Association of America website is very informative. Read what they have to say about panic attacks. Also read what the Mayo Clinic says about generalized anxiety disorder.

Since the Dr. Burns book “Feeling Good” was so useful, I figure his book “When Panic Attacks” is probably good, too, for people with panic disorders and anxiety. So read that book and do what it says. Cognitive behavioral therapy worked for me and it has worked for a lot of other people. The thing is, you have to do these things, not just read about them. So you may need the encouragement of others. Consider joining the Mayo Clinic’s online community. The Anxiety Forum might be pretty useful, too. Try them out. If they’re not for you, fine. Find other ways to motivate yourself to do the exercises.

In looking for answers for you, I went to my local San Francisco branch library, which just happened to be closed on a Wednesday morning. I wanted to put my hands on a copy of that “When Panic Attacks” book, just so I could say I’d really taken a look at it. So then I went to the Bookshop West Portal, and they had some interesting books on psychology, including the latest edition of the “Feeling Good” book, but not “When Panic Attacks.” Then I went to the Booksmith on Haight Street, and they didn’t have it on the shelves either. That’s not surprising, nor is it a bad thing. Bookstores cannot afford to stock every book; they’re not libraries, and it’s not cost effective. It is still useful to browse bookstores to see what catches your eye. They did have the “Anxiety and Phobia Workbook,” which might be useful to you, especially as it emphasizes doing the exercises, which is key.

Here is one other interesting thing that happened. In searching the Web I ran across something called the Panic Puzzle, which provided a look at what appears to be an extremely clever and successful Internet marketing operation the likes of which I have rarely seen. I didn’t actually buy the Panic Puzzle because I wasn’t able to get an accurate feel for what it is and how it works. Everywhere I looked, all I found were what appeared to be thinly disguised sales pitches, masterfully orchestrated to appear as independent evaluations. It was bizarre and fascinating.

Take a look at this document headlined “Posts Tagged ‘panic puzzle review’” that Google turned up for me with the subject heading “Tag Archive for ‘panic puzzle review’ – - Free Design Resources.” Isn’t that an amazing and interesting bit of SEO-driven word agglomeration? Look at this lead sentence: “Millions panic puzzle review Americans day after day stop stress and anxiety with over-the-counter medicine.” Fascinating, no? Something very interesting is going on here, in the gaming of search engines. It is beyond my understanding but I just thought it was interesting. I couldn’t come to any conclusion about the “Panic Puzzle,” though.

There was no easy and convenient way to locate a trustworthy independent source that might have evaluated the Panic Puzzle. It’s  possible that no reputable psychologist has shown any interest in the Panic Puzzle. Or I suppose it’s possible that the Google search engine has been gamed. I don’t know. I felt surrounded by ersatz “reviews” and “text.” Much more could be said were there time. I just found it interesting. Perhaps someone with more time to explore will shed some light on this phenomenon.

So anyway, since you have no health insurance and cannot afford a therapist, I suggest you learn all you can about anxiety disorders and panic attacks. Fearlessly investigate. Do the exercises. Try stuff even if it doesn’t sound like it will work. You have no idea what will work. Anything that will work is good, even if it sounds crazy.

What interests me is the possibility that you might actually get better results taking your recovery into your own hands, on the advice of proven experts, than you would going to a therapist who might not be as expert in the field as these authors.

It will be interesting to hear how you do. Please let me know.

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Cary Tennis

Cary Tennis writes Salon's advice column, leads writing workshops and creative getaways, publishes books, writes an occasional newsletter and tweets as @carytennis.

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