Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman

The budding of feminist activism in recent decades has accelerated the rise in literature that tackles the topic of the female experience. Illness memoirs written about, by and for women are a growing genre, and Abby Norman’s 2018 book Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain makes a powerful contribution to the field. Telling a personal story about battling not only an illness but the entire medical system, Norman explores topics relevant for all, but especially for those who are ill.

The book is a brilliant blend of memoir and theoretical text, telling a compelling story of an unorthodox childhood and a life suddenly disrupted by a debilitating pain nobody believed was real. The story follows Norman growing up neglected by an anorexic and bulimic mother, absent father and abusive grandmother. As a teenage girl she becomes emancipated and aims to reinvent herself as a professional dancer while attending Sarah Lawrence College. Her ambitions are thwarted by episodic pain that becomes a permanent ailment controlling her life. There is a futile surgery and an endless string of hospital visits, during which she faces skepticism, doubt and dismissal by the medical staff, only to finally be diagnosed with endometriosis. Norman’s quest for answers leads her down an unlikely path of working in the healthcare system and eventually becoming a science writer and advocate for women with endometriosis.

Endometriosis, often regarded as an illness of the uterus due to the synchronization of the symptoms with the menstrual cycle, is one modern medicine has been aware of for centuries. Even so, there is still no clear cause for the illness, what influences its development or how to cure it, due to lack of research and the scarcity of information on the subject. What we do know is that the condition is estimated to affect one in ten women and can take up to ten years to diagnose. The main reason for the detrimentally slow diagnosis: Women seeking help aren’t believed to be experiencing the ailments afflicting them. The first assumption is that the patient is having psychological issues reflecting her inability to cope with the natural pain of menstruation. It is baffling that an issue as common as endometriosis is greeted with so much skepticism and appears to be of little to no interest to medical scientists.

Abby Norman. Discover more about this writer’s work here

Abby Norman asks the question “Why is this so?” She’s not alone in wondering, but what sets her apart is her creative way of illustrating the issue in an engaging, easily understandable text. Norman opens up many chapters with a comprehensive overview of particular medical cases or bigger medical studies dating back to the 19th century, effectively illustrating the history of the female patient. From illness explained as hysteria to the exclusion of women from medical trials and drug testing, the narrative illustrates that medicine is not only sexist but also how that sexism is often lethal for the female patient. Norman flawlessly transitions from factual to creative writing, using personal reflections and commentary as ways to segue into telling her own story.

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain is a memoir that educates as much as it entertains. The riveting stories of the author’s unusual life are cunning bridges between important analyses of the complex relationship between Western medicine and female patients. An interesting read for anyone wanting to be challenged by literature, the memoir offers significant relevance for women suffering from illnesses of reproductive organs. Its involving prose offers comfort as well as specific information empowering women to find their voices, take control of their illness and demand medical justice. —Alekszandra Rokvity

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Alekszandra Rokvity

Alekszandra Rokvity is a PhD candidate working in medical humanities and cultural studies between the Karl Franzens University of Graz, Austria and the University of Alberta in Canada. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. “It gives me no pleasure to confirm that my academic research has only proven what I've personally experienced and intuitively known: that there is relentless, systematic sexism present at the heart of Western medical practices which not only reflects the position of women in society at large, but seriously affects the care ill women are provided.”

The Undying: Pain, vulnerability, mortality, medicine, art, time, dreams, data, exhaustion, cancer, and care by Anne Boyer

Poet and essayist Anne Boyer explores the physical, cultural and social experience of breast cancer in The Undying (Farrar, Straus and Giroux, 2019). The book, part philosophical essay, part cancer memoir, part critique of modern medicine, moves in loose chronological fashion from Boyer’s diagnosis at age 41 with one of the deadliest kinds of breast cancer through her treatment and eventual cure. The book is divided into short sections collected into chapters with interesting titles like “Birth of the Pavilion,” about the center where she receives treatment, and “How the Oracle Held,” which refers to a quote by the Greek orator Aelius Aristides, whose cure relies on dreams sent to him by the god Asclepius, and whose Sacred Tales, is a record of this experience, in effect an early illness narrative.

In addition to Aristides, Boyer also situates herself among other women writers with breast cancer, many of whom died from it. Boyer’s cure relies not on dreams but on modern medicine, or what she calls a “capitalist medical universe in which all bodies must orbit around profit at all times.” She describes the dehumanizing nature of this universe in several ways, such as that diagnosis “takes information from our bodies and rearranges what came from inside of us into a system imposed from far away,” and that cancer detectors have names “made of letters: MRI, CT, PET” which turn a person “made of feelings and flesh into a patient made of light and shadows.”

When writing of her own life, Boyer’s prose evokes the style of author Lydia Davis in its crispness and specificity, its ability to rest on the cusp of poetry, fiction and nonfiction, such as in the passage: “The day I found it, I wrote the story I was always writing, the one about how someone and I had been together again, how we shouldn’t be, and how I hoped we might finally be able to stop being together soon.” Boyer, like Davis, comments about the difficulty of writing, of the inexpressibility of the pain of cancer treatment and the exhaustion that also accompanies it. The trouble finding the right words and putting them together into sentences to express these feelings, when there are none that are adequate, becomes part of the narrative.

Despite this difficulty of expression, there is much that Boyer is clear about on the subject of breast cancer, and much of it angers her: the lack of progress in breast cancer treatment; the profits made from the pink ribbon campaign; the exploitation by big Pharma and corporate medicine of a disease that mainly effects women; the brutality, costs and environmental effects of cancer treatment. She is especially incisive in pointing out the ironies and contradictions of breast cancer treatment, such as when she writes: “People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heartwrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone.”

The Undying leaves the reader with an understanding of issues surrounding breast cancer, and an empathetic sense of Boyer’s struggles and the immense energy and strength it took for her to survive and to write this multi-faceted book.—Priscilla Mainardi

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PRISCILLA MAINARDI, a registered nurse, attended the University of Pennsylvania and earned her MFA degree in creative writing from Rutgers University. Her work appears in numerous journals, including Pulse - Voices from the Heart of Medicine, the Examined Life Journal, and BioStories. She teaches English Composition at Rutgers in Newark, New Jersey and has served on the editorial board of Intima since 2015.

The Skin Above My Knee: A Memoir by Marcia Butler

When was the last time you really, truly listened to music? In the rush-rush of daily life, it's not always easy to sit, close your eyes and listen—deeply, emotionally, exclusively—to, say, a Mendelssohn Violin Concerto or "Naima" by John Coltrane or even Adele's achingly nostalgic love song, "Hello." Instead, we OM at a meditation class, zone out watching "The Crown" or "Black Mirror," or catch up on the latest Intima Field Notes (sorry, a bit of shameless self promotion) to de-stress from our chaotic lives. We often forget the restorative, soul-enhancing powers of music, the way we can lose ourselves and discover other worlds and emotional depths when we focus and attentively listen.

During her 25-year musical career, Marcia Butler performed as principal oboist and soloist on renowned New York and international stages, with many musicians and orchestras, includin pianist Andre Watts, composer and pianist Keith Jarrett, and soprano Dawn Upshaw.

Those feelings came rushing back to me as I read a new memoir by Marcia Butler, entitled The Skin Above My Knee. Butler, who published a story called "Cancer Diva," in the Spring 2015 Intima, was a classical oboist in New York City for 25 years. She has written an extraordinary and moving account of her life that goes beyond stories about her difficult childhood, icy and aloof mother, the many abusive men in her life and her struggles with addiction. Yes, we get all of those painful stories, fleshed out and delivered with Butler's sensitive, yet sardonic wit, but we also are party to her love and mastery of music.

Oh, glorious music! Every other chapter or so, Butler brings her musical world to life in palpable detail, pulsing with all of its highs, lows and endless hours of practice. We see her pride and excitement about being accepted to a music conservatory on full scholarship only to be told to play nothing but long tones "for months, possibly till the end of the semester." We watch, as she learns the "hell" of crafting the perfect reed from scratch only to ruin it and start all over again. We accompany her through the nerve-wracking challenges and transcendental joys of performing. 

Consider this short excerpt where she describes accepting an invitation from composer Elliott Carter to be the first American to perform his oboe concerto:

Upon receiving the score, you can't play the piece or even do a cursory read-through. This is an understatement. You can't play a single bar at tempo or, in must cases, even three consecutive notes. You have to figure out how to cut into this massive behemoth. First learn the notes. Forget about making music at this point. Just learn the damn notes. Your practice sessions consist of setting the metronome at an unspeakably slow tempo and then playing one bar over and over until you can go one notch faster.....

...You remember the exact passage when the cogs lock together. It is not even the hardest section, technically, but what you begin to hear is music. There's music in there, and it is actually you making that music. Your stomach rolls over, a love swoon. The physical sensation is visceral and distinct. It is a very private knowing: a merging with something divine, precious, and rare. As a musician, you covet those moments. You live and play for them. It is a truly deep connection with the composer, as if you channel his inner life. A tender synergy is present, and you fear that to even speak about it will dissipate it immediately. Don't talk. Just be aware.

We're fortunate that Butler has decided to talk about her intense love affair with music and share her most intimate moments with us in this entertaining memoir. While the author touches upon her cancer diagnosis briefly, this isn't an illness narrative in any way, shape or form. Yet, she brings the idea of attentiveness and deep focus to light through her musical calling and finds a way to counteract trauma and pain in the expression of her art. By opening up the conversation about difficult moments and learning the discipline to recognize, express and find meaning in them, Butler also reminds us to listen, deeply, to the music of the world around us, as dissonant, lilting, strident or soothing it might be. Find the music that personally delivers meaning to you, be it a concerto or Ed Sheeran, "Shape of You." For her, it was always Norwegian opera singer Kirsten Flagstad performing Isolde's final aria, the "Liebestod," in Richard Wagner's magnificent Tristan and Isolde.—Donna Bulseco

If you would like to hear Marcia Butler in concert, the author provided a link to work where she performed. Click on the title of a piece for oboe and piano, entitled "Fancy Footwork" from the album, "On the Tip of My Tongue" by composer Eric Moe.

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DONNA BULSECO, M.A., M.S., is a graduate of the Narrative Medicine program at Columbia University. After getting her B.A. at UCLA in creative writing and American poetry, the L.A. native studied English literature at Brown University for a Master's degree, then moved to New York City. She has been an editor and journalist for the past 25 years at publications such as the Wall Street Journal, Women's Wear Daily, W, Self, and InStyle, and has written articles for Health, More and the New York Times. She is Managing Editor of Intima: A Journal of Narrative Medicine, as well as a teaching associate at the School of Professional Studies at Columbia University.