Circuelle: A Healthy Ritual for Healthy Breasts

CircuelleFoundationLogoLast October, during National Breast Cancer Awareness Month, I wrote an op-ed piece for The Santa Fe New Mexican advocating breast self-examination for early detection of cancer. In the article, I explained how finding my own cancerous lump likely saved my life.

Soon after writing that piece, I heard from Melissa Kirkpatrick, who started the Circuelle Foundation. A mother of five and successful textile designer, Kirkpatrick had her own cancer scare. It proved to be a false alarm, but led her to realize that she needed to take breast self-examination seriously.

“I thought I should have been doing breast self-exam regularly, and I wanted to work on something that reminds women to check their breasts regularly,” Kirkpatrick said. She started talking to other women, including her female siblings, about whether or not they practiced breast self-examination.

“What I found is that women believe in self-exams and want to be educated about their breast health, but a lot of women don’t like to touch their breasts and don’t want to learn a new habit, and instead have their doctor do it,” she said.

While having your doctor examine your breasts at your annual checkup is important, a lot can happen over the course of a year. And the earlier breast cancer is detected, the better the chances are for successful treatment (read: staying alive).

Kirkpatrick felt that making breast self-exam a pleasant self-care ritual could help persuade more women to check their own breasts on a regular basis. With the help of a chemist, she developed Circuelle Breast Ritual Crème™, a product that she believes makes it easier and more pleasant to do self-exams. Profits from sales of the product go to the foundation’s breast health education programs.

The foundation sent me a sample to try. I was skeptical at first; why not just use soap and water, or ordinary body lotion? But, well—I hadn’t, had I? I’d never done regular self-exams, with soap and water or anything else, for that matter.

So I tried the product. It’s a very lightweight liquid similar to facial serums that glides onto the skin and makes it easier to move your hand around your breast. Simply put, it helps you discern what’s underneath the skin easier than just soap and water or ordinary lotion. It’s not at all oily, and washes off easily. It takes very little of the product to be effective. I used it in the shower, but it could as easily be used in the bath (or during any naked moment, for that matter).

What most impressed me was the fact that I have continued to use the product to examine my breasts on a regular basis. Granted, since I’ve already had breast cancer I’m a little more attentive to self-exam than many women. But I have to say, the idea of having a special product just for this purpose—and seeing that pretty little pink can sitting in the corner in my bathtub—has in fact created the sense of a ritual, exactly what Kirkpatrick has in mind. In fact, the Twitter tags for Circuelle are #healthyrituals and #knowyourbreasts.

Each time we examine our own breasts, we are in effect saying, “I love myself. I love my body. I am worth taking care of. I can handle any truths that result.” I’m dangerously close to aping Helen Reddy’s “I am woman, hear me roar,” but heck—I want to stick around on Earth a while longer, and I’ll do anything reasonable to make sure I have a normal lifespan. Won’t you?

Kirkpatrick’s Circuelle Foundation is doing important work, especially in creating breast health educational programs for high school girls and college women (called “Beautiful Awareness”) that will serve them throughout their lifetimes. So you can feel good about purchasing the product.

Check out the website: circuellefoundation.org, and see what you think.

 

Book Review: Rollercoaster, by Woody Weingarten (Vitality Press, San Anselmo, California, 2015)

Rollercoaster is, in author Woody Weingarten’s words, “a partial memoir-chronicle, partial love story and cumulative guide to hope” written about his journey with his wife through her struggle with roller41c6xW8AHHL._AA160_breast cancer.

Honestly, I was prepared to be pissed off at this book, afraid it would be a tale of one man’s woe at having to prepare his own dinners while his wife was hospitalized for a mastectomy, or perhaps more politically correct yet nevertheless self-pitying drivel.

I was happily surprised. Weingarten has written an honest and vulnerable narrative that focuses primarily on his own feelings and reactions to his wife’s illness but never loses sight of the fact that it is she who had cancer—until he gets cancer, too. Even so, he discusses his own cancer only briefly, keeping the emphasis on the story of her illness and their joint confrontation with the threat to her life.

Writing 20 years after his wife’s diagnosis, Weingarten relies on his and his wife’s personal journals to detail the events and recall their shared but sometimes wildly different responses. Being caregiver for a wife with cancer made him “a one-man pet-sitter, nurse, servant and counselor” overnight—all while he continued to work a full-time job. He admits to being “fragile, persistently on the verge of tears” and says that often, “instead of wanting to be a caregiver, I’ve wished to curl into a fetal ball and let out a bloodcurdling scream.”

Weingarten doesn’t pull any punches about his anger with his wife’s demands at times. He unflinchingly discusses the impact of her illness on their sex life and the fact that they went to individual and couples’ counseling. Yet the two also suffered in concert. “The illness is chewing up and spitting out our lives,” he journaled at one point, and even when things seem to be going well, “an invisible force yanks us back into Cancerland.”

In addition to their personal story, Weingarten offers a significant review of clinical advances in breast cancer since his wife’s illness and effects of cancer on caregivers. Throughout the book, he also discusses his participation and eventual leadership in Man-to-Man, a support group for spouses of women with breast cancer. Though he admits they do the “man thing” and rarely discuss breast cancer directly, the men provide serious emotional backup to one another, particularly when spouses die. He remains involved in the group even today, offering his experience, strength and hope to newcomers, men whose loved ones are newly diagnosed.

The author, who is a writer and editor by profession, has written an engaging, fact-filled, intimate story that promises to be helpful to men who are accompanying a loved one through breast cancer or any life-threatening illness. (And not a bad idea for the patient to read, either.) Writing with the perspective of 20 years allows him to share the renewed and expanded sense joy and appreciation of life that he and his wife have developed and maintained because of the threats to their lives from cancer.

And it’s that love story aspect of the book that lingers when the last page is turned.

Only Eight Days Left in The Booby Blog Project Kickstarter Campaign!

Dear Friends,

Have you been meaning to pledge to The Booby Blog Project on Kickstarter and just haven’t taken a moment to do it? Well, if so, now is the time! We are fasting approaching the deadline by which I must reach my goal. This morning, we are at 62%. Please consider supporting this project now, and generously. I’d appreciate it if you’d also share the link to The Booby Blog Project Kickstarter Link.

Most of you probably understand how Kickstarter works: If I don’t reach the goal, I don’t receive any money (and of course your credit card is not charged, either). So it’s essential that you make a pledge through Kickstarter if at all possible. If you don’t like to do online pledging, please contact me and we’ll work it out so you can contribute another way.

Some good news: The Cancer Foundation for New Mexico has agreed to sponsor two free workshops I am giving for women with breast cancer in October, Breast Cancer Awareness Month. I am thrilled to have this chance to share my experience and inspiration with others while learning from them as well.

Gratefully,
Hollis Walker

Hollis’s “Do’s and Don’ts” For Talking With a Friend With Breast Cancer

There are no rules for talking with a friend who has breast cancer, of course. These are just my ideas. But I’m pretty sure a lot of women and men with breast cancer (or any kind of cancer) would agree with them. Use your own judgment. Ask yourself, Will these words comfort my friend?

Don’t ask, Did you quit smoking/drinking/eating red meat, etc.? This implies that your friend may have caused her or his own cancer, or at the very least can make it better by doing exactly the “right” things. Any way you cut it, this is unkind.

Do offer to bring a fabulous meal over (or to take her out for a meal). What does she crave, and what night can you drop it by, at what time? People often say, “I want to help. Let me know what you need.” But most of us are not going to call up friends and say, “I’m totally exhausted. Could you bring dinner tonight?” So just do it already!

Don’t try to dissuade your friend from having and expressing anger, fear or other “negative” feelings. Many of us think we can’t be honest with our friends because they want to “fix” our feelings. (I shared a feeling about my cancer experience with a friend once and she said, “OH, I wouldn’t feel like THAT!” Really? Are you sure? Get back to me on that if you ever have cancer, ok?)

Do just listen. Really. Try saying, “It makes total sense to me that you feel that way.” Touch her hand or shoulder, or offer a hug. “I am so sorry you are going through this.”

Don’t tell stories about people you know who’ve had breast cancer, the bad stories or the good stories, or even your own story, unless she asks for it. The bad stories will add to her terror. The good stories may be just as frightening, if they don’t match up with her experience. Ditto your story.

Do encourage your friend to tell you her story. Hers is the one that really matters to her, right now. After her surgery or first radiation or chemo session, ask, “Would you like to talk about what it was like?” Sometimes we feel freer to tell a friend than family members about such things; we may feel we are over-burdening family with our constant “cancer talk.”

Don’t give advice. Don’t tell her what supplements to take, what alternative practitioners to see, how much sleep to get, what kind of water filter to install—that is, unless you want to take complete responsibility for the effects (or lack thereof). (I got sooooo tired of, “Have you tried this?” “I think you should take such-and-such.” “Have you read this book?” Even from other women with breast cancer.)

Do encourage her to take good care of herself, to treat herself well physically, emotionally, and spiritually. Ask her, “What would make you feel better today? How can I help you do that?”

Don’t ask, “Are you having a lumpectomy or mastectomy?” or “Are you going to have reconstruction?” “Can I see your scar?” “What’s your chance of recurrence?” These are very private matters. Let her bring them up with you if she wants to. (A complete stranger once asked me such a question in a business meeting. Honestly.)

Don’t offer clichés, such as, “What doesn’t kill you makes you stronger,” or “God is testing you, but you’re up to the challenge,” or “Stay strong!” etc. Those statements minimize the individual’s experience, which is unique to her or him. It’s the equivalent of giving a grownup pabulum.

Do be honest about your feelings about your friend’s illness. Telling someone you are frightened for them, that you love them and treasure them, that their illness reminds you of your own mortality, is appropriate and will likely be appreciated.

Don’t feel you have to be serious all the time. Having cancer gets old. Talking about it gets even older.

Do bring over a funny movie to watch, send silly greeting cards, cut out cartoons to share, come over dressed as a sheep or a nun or a former president. Talk about ordinary stuff: the great book you’re reading, your crappy boss, the new café down the street. Don’t censor yourself; be YOU.

Book Review: Ordinary Life, by Kathlyn Conway (W.H. Freeman and Company, New York, 1996)

Conway coverI found this breast cancer memoir—written by a psychotherapist about her third bout with cancer—deeply disturbing. As I read it, I sometimes even felt irritated by the author’s responses to her illness.

For me, such irritation is always a sign that my ego is being triggered. In other words, what Conway has to say struck very close to the bone for me, and likely will for many other breast cancer patients. Sometimes I’d rather not see my own reactions so well quantified and articulated!

Conway is particularly on point in her observations of her feelings vis a vis her medical experiences. Of her first meeting with her surgeon, she writes, “He tells me that he would like to examine me. It’s amazing how quickly I withdraw all emotional significance from my breasts so that I can let him examine them. These breasts are no longer breasts that give sexual pleasure, nor are they breasts for nursing. They’ve become mere appendages, parts of my body to be examined and felt for tumors. They are suspect, perhaps guilty.”

The author’s experiences of the medical establishment are upsetting to her and an indictment of the insensitivity medical caregivers sometimes display. In another meeting with her surgeon, to discuss reconstruction, he talks glibly about how different women want different kinds of breasts.

“He jokes that this is the time women can get the large breasts they’ve always wanted. I’m appalled. . . . I cannot believe that this doctor is talking to me like this. Here I sit, naked above the waist, in front of a mirrored wall, talking as if I’m choosing a dress. Doesn’t this man know that I’m not here for fun? Doesn’t he know that I’m about to have my breast cut off? Why isn’t he mentioning what is really happening and how horrific this experience is for me?” Instead, Conway says, she feels like “a piece of meat.”

She also points out that a woman’s age factors into how she is treated by caregivers. It is assumed that women beyond a certain age shouldn’t care about losing their breasts. (I often wondered if my very grey hair was the reason no medical caregiver ever asked me how I felt about having breast surgery.) But losing a body part matters to everyone, no matter what their age, Conway points out.

Another taboo topic Conway explores is the odd depression that can set in after treatment ends.

“It’s not, as the books, say, that without my treatments I no longer feel that I am doing something constructive about cancer,” she writes. “I feel let down because I cannot seem to return to my life. How am I supposed to go on living and believing there’s a reason to do anything? Life seems too fragile. Why can’t I have my old, unaware, daily life back?”

Even months later, she continues to suffer from depression, which doesn’t seem rooted in reality or triggered by any conscious event, person or place. “While doing errands or making dinner I may be overcome by a feeling of unbearable sadness. At night, I sometimes awaken to find that I’m gripped by the fear I battled during those nights of treatment. At times the unrelenting sobs return for no apparent reason.”

Ordinary Life offers no advice, no happy endings, no Pollyanna pronouncements. The author says up front she doesn’t believe that cancer per se is transformative. However, she does believe that those who have been sick learn to “transform our experience of illness into something we can manage, into something we can live with, and that this utterly human process is in itself meaningful.”

Amen to that.

 

Book Review—Living on the Margins: Women Writers on Breast Cancer, Hilda Raz, Editor (Persea Books, 1999)

Living on the MarginsThis beautiful anthology collects essays and poems by 22 women writers who had breast cancer. It is as disturbing as it is beautiful, of course; how could it not be? Yet the varying approaches the writers took to their topic are fascinating.

A number of the authors—all recognized, highly accomplished women, most of them university professors—chose to write primarily about someone else’s experience rather than their won.

Sandra Spanier writes about the late writer Kay Boyle and her experience of breast cancer in the 1960s.

Carole Simmons Oles interviewed Dr. Susan Love, a leading breast cancer expert and co-author of Dr. Susan Love’s Breast Book, issued in its fifth edition in 2010 and sometimes called the “breast cancer bible.” (Oles also contributed a separate, personal essay.)

Judith Hall examines the 18th-century writer Fanny Burney’s letters about her breast cancer, which she wrote to her sister Esther.

Eve Kosofsky Sedgwick’s paper on her illness in context with that of a friend with AIDS, first presented at a gay and lesbian studies conference, is included.

These entries in Living on the Margins are thought-provoking—but not feeling-provoking. I found them less than accessible in some cases and downright boring in others.

I had sought out this book because I hoped to hear about other women’s experiences of breast cancer in language that was as powerful as their stories. I got that in many of the essays. Alicia Ostriker’s “Scenes from a Mastectomy” is particularly poignant. Before her surgery, she writes:

I try not to be paralyzed with dread. I tell nobody. I keep my secret fear like a bone wrapped in a handkerchief to take out and chew on when I am alone. I am perfectly normal, busy, normal, busy. Only some days, late in the afternoons, I implode, dive into bed in fetal position, become a motionless speck in a large white empty chamber whose walls, floor and ceiling are rounded off like the inside of a freezer.

Is there any woman who has had breast cancer and cannot identify with Ostriker’s experience? Her use of metaphor concretizes those feelings, honors them, makes them real. Her fear has taken her on a trip, beyond her normal state:

Without even knowing it, I have passed a threshold, crossed a border, become a permanent citizen of the nation of fear. It is as if a coat of ice has formed around me.

All of us, her breast-cancer sisters, have crossed that border and sometimes feel ourselves to be expatriates to our former lives, our former nations.

In her essay, “Telling,” Elaine Greene expresses the anger many of us feel, justifiably, at the medial establishment and its unwritten rules of conduct:

This is the worst part. The surgeon will not tell me what to do. I can choose the gracelessly named lumpectomy, in which they remove more tissue at the tumor site along with lymph nodes, followed by radiation and looking down at myself and wondering for the next five years. Or, dear God, the other. It is up to me, with no medical education. I know this has to do with lawsuits. . . . I wonder why it is not considered malpractice for a doctor to refuse to share his wisdom.

Carole Simmons Oles, in “Lateral Times,” echoes an interaction with a friend that many women have experienced:

On the phone my friend expresses relief—now that’s over and we can get back to normal. Not so fast. You mean you feel more vulnerable? she asks. I am more vulnerable, I say. This sums it up. Only the women who have breast cancer don’t have this attitude of everything’s okay now. It will never be quite okay again. Not to dwell on constantly, but each mammogram and the long-delayed report of results brings fear, each pain forecasts some dire efflorescence. . . .Each bodily awareness takes its character from cancer—the one that was caught and the one that’s running, dodging discovery.

Greene reports a fantasy after her mastectomy that certainly many women have shared but likely never told another soul—the question of what happened to her breast, the one that was removed:

I am forced to picture the transportation of the breast to the pathology lab. Did they put it in a plastic box? A Baggie? Did they put it on a plate, like Saint Agatha’s in Italian martyr paintings? Was it still pert and round like Saint Agatha’s? Not likely. Did anyone say, “Isn’t this a shame, such a pretty pink nipple?” And how exactly did they determine there were no more lesions? They sliced me like a side of smoked salmon is how. Don’t think sliced me, I say to myself. It wasn’t me any more. Body parts do not have a soul.

The writers of this anthology are, by definition, well-educated, middle- to upper-middle-class (more than one writer talks of going to her family’s country home), but happily, most are acutely aware that they are privileged, and acknowledge that their experiences are far different from those of women without resources and support systems. Yet the similarities in the experiences of women with breast cancer outweigh the class differences; these stories are for the most part about the authors’ inner experiences of having cancer. Most readers who have had breast cancer will surely find affirmation, see their own thoughts well-articulated, and find some comfort within.

Breaking the “Narrative” of Life: On Illness and Spirituality

Nora Gallagher

Nora Gallagher

A version of this article first appeared in The Santa Fe New Mexican

When Nora Gallagher got sick, she did what any writer would do: She started taking notes. Compulsively. As she always had, about everything.

Gallagher writes books and articles about spirituality and faith and is preacher-in-residence at Trinity Episcopal Church in Santa Barbara, Calif. She was born and spent some of her childhood in Albuquerque, and attended St. John’s College.

In 2009, the author was living what she calls the “onward and upward” life when she noticed a little blur at the periphery of her right eye. That little blur launched her on a journey that at first defined itself as a medical crisis. Soon it became clear the blur also was the harbinger of a crisis of faith.

“I had the uncanny feeling of being behind a glass wall that had slid down out of the sky and separated me from the rest of the people on the street,’’ Gallagher writes. “My body. . .was no longer possible to ignore. It was in the before. Now I was in after, a country that I could do nothing to leave, for which I was completely unprepared, for which I had no map.”

Moonlight Sonata at the Mayo Clinic chronicles the course of Gallagher’s crisis, the interminable visits to doctors—good and bad, humane and indifferent, each with his or her own theory about her loss of sight—and the seemingly endless tests. With great clarity, she describes her responses to this circus. She often had “the feeling of being a thing to test, not a person to heal.” She realized for the first time that, “Like other people who live a middle-class professional life, I had thought I could manage to control or contain or overcome almost anything.” Instead, she discovered she was powerless.

She stopped going to Sunday church services when she found she could no longer faithfully say the Episcopal creed and could not tolerate being present in the crowd in the sanctuary. She raged at God and at people who weren’t sick and who didn’t know just how tenuous their hold on life really was.

And then. . .grace. Someone suggested she go to the famous Mayo Clinic in Rochester, Minn. There Gallagher found a medical system that treats patients humanely, one that operates by a collective and rational team model. Finally, she got an accurate diagnosis of sarcoidosis, a rare autoimmune disorder. With it came hope.

“I am and am not who I was,” she writes near the end of the book. “I have lost part of my vision, part of my hearing, and part of my faith.”

Yet faith continues to be central to her life. Gallagher now attends her church’s small group activities, including twice-weekly meditations and a weekly “base community” service, including communion. Gallagher also continues to preach, and recently offered a sermon at the National Cathedral in Washington, D.C.

In an interview, she said her sermon focused on how our lives represent narratives that can be broken, as her was by illness, or by the loss of a job, a death, or other life crises. One of the unavoidable results of a broken narrative is extreme vulnerability.

“I’m still very much aware of my vulnerability,’’ she said. “It’s not all the time, and it’s not the way it was [during the illness].” But her understanding of life, of the world, remains changed on a very deep level, Gallagher said. She finds herself identifying with people who are suffering in a way she didn’t in the past. She understands that things are not always going to be okay. She agrees with Susan Sontag’s assessment in her classic Illness as Metaphor that “suffering doesn’t always have meaning and it isn’t always enobling at all.”

“All that aside, I did find that I know a lot more about my mortal life, I know a lot more about staying in the present, I know a lot more about meditation and its enormous gifts. I would not say it was worth it but I certainly am right on a line between was it, or was it not?”

Occasionally, Gallagher said, she has moments in which she forgets what she has learned, when she feels once again innocent and oblivious. “It’s like a vacation,” she said. “I glide back. And in that gliding back I think I can push myself too hard, and forget what my body is telling me.

“I don’t want to go back to ‘onward and upward.’ It’s a tremendous gift to know that we are vulnerable—that it’s a disorder to imagine that we are not—and that we are also resilient. Those things are rock-bottom truths that I now know.”

Arthur Frank, in At The Will of the Body: Reflections on Illness, suggests that “recovery deserves a ritual.” When Gallagher was well enough to write again, she returned to work on a memoir for which she had a previous contract. But that memoir “started to morph,” she said. “I realized this was the book.” Moonlight Sonata at the Mayo Clinic proved to be her ritual of recovery.

Book Review—Seeing the Crab: A Memoir of Dying Before I Do, by Christina Middlebrook (Basic Books, 1996

seeing the crabMemoirs about cancer are sometimes hard to read, at least for those of us who have had cancer. While I had cancer and was writing what I called The Booby Blog, one friend who had walked through cancer before me said, “I’m sorry, Hollis, I just can’t read your blog; it brings it all back for me.’’ But other former cancer patients did read it, and said it helped them because it affirmed their experiences—and wished they’d had it to read when they were actively sick.

Christina Middlebrook’s Seeing the Crab: A Memoir of Dying Before I Do (Anchor Books/Doubleday, 1996) was a difficult read for me, in part because her experience of cancer was about as horrible as I can imagine, and therefore much worse than mine. I felt guilty reading her story, feeling my own represented something even less than Cancer Lite.

When Middlebrook went to the hospital for her mastectomy, they had her walk into the operating room and get on the table before she was anesthetized or sedated. She was terrified. And for good reason. She was not adequately anesthetized before they began, so she felt the surgeon slicing her breast off, but was by then intubated and unable to speak.

Her story gets worse from then onward. Multiple rounds of chemotherapy and radiation. Hair loss and weight loss. Dizziness and nausea and painful rashes. A bone marrow transplant. High-dose chemotherapy requiring replacement of stem cells with her own, harvested in advance of the deadly treatment. Unable to eat, to drink, too weak to get into or out of the bathtub. Unable to think clearly, she experienced complete dissociation from herself. Her cancer metastasized to her spine.

Why would we want to read this story, particularly if it parallels our own? In part, I think, because of the affirmation one finds in a fellow traveler’s tale. Middlebrook lived in the Bay Area, regularly attended a breast cancer support group, and had a supportive husband and children. Not every patient is so lucky. Yet to read her rage, her anticipatory grief for her own death, her struggles to maintain her family relationships, gives others permission to have their feelings, too.

Middlebrook is especially adamant in her criticism of those who would have every breast cancer patient put on a happy face and a Pollyanna attitude. And she talks about the often unspeakable: the pain of losing her breast, her sense of her self as a sexual being, her libido.

In a chapter called, “Sex, Shit, Menopause and Money,” she writes, “At my swim club, my prosthesis/breast slips out of my ugly, old-lady mastectomy bra and falls to the floor. Embarrassment floods me like a hot flash. The prosthesis, out in the open, is far more embarrassing than the Amazonian scar across my chest.

“The prosthesis is proof that I am trying to pass.”

Middlebrook writes with scorching honesty, yet poetically as well. The “crab” of her title refers to the crustacean, which she learned to catch as a child, and later taught her children to catch.

“The crab is a shifty beast, its eyes attached to its body like headlights. Like cancer, it never takes the direct path, preferring to move sideways and furtively. You learn to crab in your own way and your own time. . . .”

When I finished Seeing the Crab, I Googled Christina Middlebrook and found her obituary in the San Francisco Chronicle. She was diagnosed at age 50 in 1991 and by 1994, when she was finishing the book, was prepared to die soon, perhaps within months.

In fact, she lived until she was 67; she died in 2009. My immediate reaction was, “Wow, well, that was pretty great after all, wasn’t it?” I’m pretty sure she would have said, “Fuck you. It still wasn’t long enough.”

When Doctors Abuse Their Patients

One of the topics in my upcoming book, The Booby Blog: A Cancer Chronicle, is how the medical establishment often fails us. The recent story about physician abuse at Johns Hopkins Hospital reminded me of my own such experience during childhood and its impact on me.

In case you didn’t see the articles, Johns Hopkins Hospital agreed to pay $190 million in a settlement with 7,000 women an OB-GYN doctor secretly made videos of during pelvic exams. The story is shocking—but only in the amount of the settlement and the number of women involved. Cases of physician abuse of patients have arisen and been made public many times before, and certainly many more cases have gone unreported and some secretly settled out of court.

It’s a blessing and a curse that the Hopkins physician, Nikita Levy, took his own life after a colleague discovered his behavior in February 2013. The blessing is that no woman will be forced to be deposed or to take the witness stand in a trial against Levy; the curse is that neither will she be able to accuse him, face to face, not only of the actions he took but of their effect on her.

A New York Times story about the case quoted Jonathan Schocher, an attorney representing the victims, who said that as a result of their experiences, many of the victims have given up seeking medical care for themselves. Some also have quit taking their children to pediatricians because of their understandable fears.

“They feel an extreme breach of faith, breach of trust and betrayal,” Schocher told the Times.

Those feelings are familiar to me. The Johns Hopkins’ case triggered my memories of abuse by a physician because of its similarities to an experience I had as a child.

I was 10 years old when I was diagnosed with ulcerative colitis, a chronic intestinal disease. Because my father was in the air force, I was cared for at the military hospital at Carswell Air Force Base in Fort Worth, Texas. Over the years of my illness I saw several different doctors, as was then typical of military medical care. I have no memories of their names. I have specific memories of the many painful and sometimes humiliating tests I had to undergo, but little recall of interactions with my physicians. Except for one.

My memory of my appointment with that physician is very limited. I was probably 11 or 12 years old. I remember being in a large room with the doctor and a female nurse. I remember him telling me that my disease could cause delays in my development. (This is factually true; ulcerative colitis can cause developmental delays in children.) I remember that he had me take off my clothes and walk naked back and forth in the room so he could “see whether your bones are growing correctly.” I remember he also had me stand in front of him naked while he took close-up Polaroid photographs of my budding breasts and genital area. I remember feeling uncomfortable throughout the appointment, that something was wrong, and imagining those pictures stapled to my chart like shameful mug shots. But I assumed, as children do, that the “something” was wrong with me.

When I recalled the incident as an adult, I realized that the physician was the one who was wrong. Any real need to document my “development” could easily have been done in writing. No, he was a pedophile using legitimate circumstance to practice his perversion. The nurse was his subordinate as a hospital employee and in military rank; if she thought what he was doing was wrong, she would have been taking a big risk to say so. Besides, he didn’t touch me inappropriately, not that I remember, anyway. Maybe if he had she would have taken that risk. I can almost let her off the hook. Almost.

It never occurred to me to protest what was happening in the moment or even to tell anyone later. I was a child, and I had been raised to be respectful of authority, a value heightened in military families. I told myself that what happened that day was normal.

But the experience left emotional impacts that even now I have difficulty articulating. It also made me wary of medical caregivers, especially male doctors, thereafter. As soon as I was an adult, I made it a point to always see female practitioners whenever possible. I also read books about gender bias and abuse in medical care and vowed to become my own patient advocate.

It has served me well. In my most recent extended interaction with the medical establishment—my diagnosis and treatment for breast cancer—I found it necessary to stand up for myself numerous times. The troublesome situations never involved sexual misconduct, but breaches of trust and faith did occur.

I understand the trouble that victims of the Johns Hopkins case are having in trusting the medical establishment again, especially their fears about their children’s safety in the hands of pediatricians. One need only look at documented cases such as that of Earl Brian Bradley, a convicted serial child molester and pediatrician from Delaware, to justify such fears.

Victims of physician abuse have responses similar to those of rape and sexual molestation in other circumstances, such as self-blame, shame and guilt. If you or someone you love feels they have been treated inappropriately in a medical situation, seek help. Report inappropriate conduct to police, to state licensing officials, and to patient advocates, ombudsmen or similar officials in hospitals or other institutional settings. Most importantly, victims of such abuse should seek counseling, which is often available free of charge through rape crisis centers. Counseling may help patients who have been abused heal emotionally from the incidents as well as gain the courage to be their own advocates so they don’t avoid pursuing needed medical help.

Children are a different story. The Levy victims must be able to overcome their own fears in order to obtain medical care for their children as needed. Given my own experience, I advise parents never to leave a child alone with medical personnel during examinations and treatments. If a physician or other medical caregiver refuses to allow a parent to accompany a child for standard examinations and treatments, the parent should seek out another caregiver. Situations will arise in which it is impossible for a parent to be present, such as surgeries. But in most such circumstances multiple people will be in attendance, decreasing the chance that anything untoward might occur and affording the parent some sense of security. In hospital settings parents may also request a medical chaperone if their child is to be alone with a caregiver. (For example, during X-rays or radiation treatment, when typically no one but a technician is with the patient.)

Sexual predation is a fact of life, and physicians are no more or less likely to be sexual predators than mechanics, accountants or jockeys. Physicians who molest their patients will continue to be licensed and practice. We can only hope and advocate for their exposure and prosecution. The nurse who reported Levy’s video recording should be commended for her action and the hospital for what appears to be its ethical handling of the situation.

May those who were victimized by his behavior find the help they need to heal and the means to protect themselves and their families from being similarly mistreated again.