Chapter 4
The Mysterious World of Endometriosis
Despite affecting an estimated 176 million women worldwide, endometriosis research remains surprisingly limited and underfunded. Dr. David Redwine's groundbreaking work in the 1980s meticulously mapped the pelvis to identify likely locations of endometriosis, creating detailed anatomical atlases that challenged John Sampson's 1920s "backwash" theory. Sampson proposed that menstrual fluid could flow backward through fallopian tubes and implant in the pelvis, but despite a century of technological advances including electron microscopy and genetic analysis, this foundational theory has never been conclusively proven or disproven.
Medical textbooks offer surprisingly sparse information on endometriosis, with most devoting fewer than ten pages to this complex condition. Even specialized gynecological texts contain only brief passages, typically focusing on infertility rather than the condition's myriad symptoms or mechanisms. These can include chronic pelvic pain, fatigue, gastrointestinal issues, and bladder dysfunction. The research disparity is stark - PubMed returns about 1,800 pages for endometriosis versus over 30,000 for liver disease, which affects a comparable number of people. Annual research funding shows similar inequity, with endometriosis receiving a fraction of what's allocated to other chronic conditions.
The fundamental mysteries of endometriosis persist. We don't know with any certainty how or why endometriosis begins, why some women suffer severely while others with extensive lesions feel fine, or why symptoms may come and go throughout life. Even basic facts aren't widely agreed upon - the doctor you see largely determines how endometriosis is explained to you. Some claim there's no cure, others insist they can provide one through various interventions ranging from diet modification to radical surgery.
Many general gynecologists and surgeons wouldn't recognize endometrial lesions if staring directly at them, as these can appear as clear, white, red, brown, or black spots depending on their age and activity. The few specialists skilled in excision surgery - which has a documented 56-66% cure rate according to Dr. Redwine's long-term studies - often have waitlists stretching years and frequently don't accept insurance. Non-specialists often treat endometriosis as incidental, offering temporary solutions like birth control, Lupron (with its concerning side effects), pregnancy advice (incorrectly believing it cures the condition), or hysterectomy - reminiscent of nineteenth-century physicians castrating "hysteric" patients.
Many accepted beliefs about endometriosis are based on half-truths or disproven ideas. Take retrograde menstruation - while this backwash happens to approximately 90% of menstruating people, normally the immune system efficiently clears these cells. This theory fails to explain endometrial lesions found in remote locations like the diaphragm, brain, or eyes, or cases in men receiving hormone therapy for prostate cancer.
The supposed link between endometriosis and infertility represents more correlation than causation. The disease is more commonly diagnosed in infertile women because they're actively seeking treatment and undergoing laparoscopy, not because all women with endometriosis are infertile. Studies show many with the condition conceive and deliver normally, though some may take longer to achieve pregnancy.
The current staging system for endometriosis (stages I-IV) faces criticism for its arbitrary point system that ignores quality-of-life indicators. Unlike multiple sclerosis staging, which considers symptom episodes and life impact, endometriosis staging fails to capture the relapsing-remitting nature of this hormone-dependent disease or acknowledge that minimal disease can cause severe symptoms while extensive disease may be asymptomatic. This disconnect between disease appearance and symptom severity continues to puzzle researchers and clinicians alike.
Chapter 5
A Childhood Without Nurturing
Norman's health struggles were compounded by a childhood marked by maternal neglect. She was always "Mum"-never Mom, Mama, or Mommy. When Norman was born, her mother lived with her father in a trailer park near his job as a power company lineman. Her mother, however, was ill-equipped for motherhood at twenty-four. From Norman's conception, she was statistically improbable-her mother had been told her low weight would prevent pregnancy. Her birth was traumatic; she cried inconsolably for months while her mother hemorrhaged and coped through vomiting.
Her mother had developed anorexia as a preteen after her grandmother died, finding comfort in bulimia during high school. By twenty-three, she stood five-foot-five and weighed under one hundred pounds. Growing up between her mother and grandmother created a dysfunctional triangulation where Norman became a pawn in their relationship. As she developed, her mother exerted disturbing control over her body-washing her hair into her preteen years, controlling her appearance, and strictly portioning her food, which led Norman to steal and hoard food at school. Meanwhile, her mother wasted away physically, her skeletal appearance haunting Norman's nightmares.
Despite these failings, her mother gave her one precious gift: a love of books. While she denied her food and love, she never denied her a book, regardless of topic or cost. Their thin-walled trailer was dark and dusty, with blankets over windows and fans running year-round-a tomb-like environment where time and place were lost. Leaving the house was always like waking from a bad dream.
In photos, Norman appeared worn and tired with dark circles under her eyes-pale, porcelain-skinned, and unnaturally thin, though almost always smiling. She spent so much time alone that by age seven, she wondered if she was a ghost. She became a "proficient haunt," hiding in her father's closet, listening to the dryer's mechanical heartbeat while daydreaming of a glowing angel who might embrace her.
Hunger dominated her childhood. Her mother strictly controlled her food intake, serving bland, colorless meals in tiny portions. After her mother retreated to her bedroom each evening, Norman would sneak into the kitchen "like a highly trained operative," calculating silent movements to steal pretzels or scraps while her father sat oblivious before the television. At school, she became the queen of "Are you going to eat that?"-surviving on classmates' leftovers despite her fear of germs.
When Norman became ill years later with persistent nausea, she feared she was developing her mother's eating disorder. Then came a disturbing revelation at Olive Garden when she vomited unexpectedly and experienced an alarming euphoria-a "deep, resonant calm" that felt like being "high as fuck." This sensation returned in college after a late night of coffee and ramen. She recognized the dangerous ecstasy, having by then experienced both marijuana and orgasms-she understood its fatal potential.
Chapter 6
Finding Freedom Through Education
Norman's salvation came through teachers who noticed something wasn't right. In first grade, Mrs. Neman encouraged her writing, making her feel proud for the first time. In middle school, Mrs. Cassandra McCue became her lifeline. Unlike her peers with their hip-hugger jeans and gel pens, Norman wore black business suits and vintage dresses with silk scarves, writing X-Files fan fiction in her notebooks. Cass took her under her wing, risking her job to save her from her home situation.
The day of her emancipation hearing arrived with unexpected calm. After being delayed by a divorce case, she sat in a small courthouse room with her lawyer Mr. Fenig, watching through venetian blinds for her parents to arrive. When they finally pulled up, her father merely walked to the courthouse steps then returned to the car and sped away. Mr. Fenig returned with a paper-her parents wouldn't contest the emancipation.
The hearing she'd spent weeks preparing for lasted less than twenty minutes. In her ill-fitting secondhand suit, she took an oath on a tattered Bible and read her statement, which had become almost mechanical from rehearsal. The judge complimented her writing, questioned her about her plans to live with Cass's family while finishing school, and granted her emancipation with a startling bang of her gavel.
One unremarkable day during her senior year, Norman came home to find a large green envelope from Sarah Lawrence College waiting for her. Despite her perfect score on the SAT essay portion (balanced by poor math performance), Sarah Lawrence didn't require test scores, instead weighting personal essays heavily. Having previously written an essay convincing a judge of her readiness for emancipation at sixteen, she felt equipped to persuade an admissions committee of her college readiness.
When she received her acceptance letter, it became her most prized testimony-even more meaningful than her official emancipation document. She rushed to show Estelle, who shared her excitement. The next morning, she proudly presented the letter to her favorite English teacher, who looked genuinely shocked, lowering his glasses to inspect it more closely before breaking into a smile of wonder: "You did it. You got in. You actually got in." His initial doubt stung, but she realized his reaction reflected the same hesitation she'd encountered from other adults. This letter was her ultimate boon-proof of her triumph in her own personal hero's journey.
Chapter 7
Love, Sex, and Pain
Six months after returning to Maine from Sarah Lawrence, Rebecca came to live with Norman for the summer. Norman had just turned twenty and settled into a tiny apartment overlooking a nature preserve. In early July, her life changed dramatically when she fell in love for the first time.
She frequented a local coffee shop that became her sanctuary from the tourist crowds. One day, her friend Julia informed her that the barista wanted to ask her out-something Norman found hard to believe given how poorly she felt and looked most days. When her boss unexpectedly delayed opening the gallery one morning, she went to the cafe where the barista spilled coffee on her lap. Despite her nervousness about explaining her eating restrictions, when he asked her to dinner, she said yes.
Norman fell easily in love with Max, captivated by his dancer-like movements and nimble hands. For the first time since getting sick, the world seemed to spin madly on again. She hoped this new love might help her develop self-love too-perhaps she'd learn to see beauty in her own body's movements.
At twenty, Norman was still a virgin. Her last relationship had been in high school, where physical affection remained limited. Having grown up without regular hugs or kisses, she yearned for physical connection but had few opportunities to experience it. When Max and she were together, even his nearness without touching set her body aglow.
She lost her virginity to Max in a sunny corner bedroom on borrowed sheets with a higher thread count than she felt she deserved. Despite the pain of penetration, she was surprised to discover she enjoyed most aspects of sex. The problem was that sex never stopped hurting-a deep ache that resonated in her pelvis-though it took her nearly a year to admit something was wrong. Despite the pain, she fell in love with the physical closeness, the warmth of sleeping beside someone who made her feel safe.
As her health declined, she discovered that doctors suddenly started listening when Max corroborated her complaints about painful intercourse. This infuriated her-either they hadn't believed her without a male alibi, or her suffering alone wasn't enough to inspire action, but disappointing a man was. She tried everything: birth control, an IUD, pelvic floor therapy, homeopathy, naturopathy, tinctures, raspberry tea, castor oil packs, TENs units, and heating pads that burned her skin. Doctors suggested different sexual positions as though two twenty-somethings wouldn't have already tried every surface in their apartment.
Chapter 8
Becoming Her Own Medical Detective
Less than a month after Max and Norman moved back to their hometown, she got a job in medical records at the local hospital. People are surprised she worked while so sick, but she had no choice-her savings were gone and medical debt was crushing. The job was manageable-desk work with reasonable hours and an elevator ride to the ER if needed. With her mind being all she had left, she took advantage of the hospital's medical library, determined to understand what was causing her pain and become an expert in it.
She began researching endometriosis in medical journals, creating a thorough medical history for herself using proper terminology. Her most pressing question was why she had constant pain at McBurney's point-the location of the appendix-when imaging showed no appendicitis. Could endometriosis affect the appendix? Could she have lesions on her intestines? The pain at McBurney's point felt sometimes like a heavy hot stone, other times like a near-bursting balloon, especially when walking quickly or going over bumps in a car. During intercourse, each thrust felt like jabbing whatever was inside her, creating a searing duet of distinct yet intertwined pains that she couldn't parse out.
While wheeling her cart of medical records through the hospital, she'd often chat with Martina, a lab manager who took interest in her future plans. When she mentioned her health research, Martina offered to put her on the pathologist's list as an observer should an autopsy occur-a rare event at their small hospital. A few weeks later, Martina called excitedly to tell her an autopsy was scheduled that afternoon. Norman rushed to the morgue with a colleague, where they were instructed to suit up in sterile gowns, masks, and booties.
When she returned to Dr. Wagstaff's office with her research about endometriosis, it had been over a year since her first visit. Her pain had worsened to the point of requiring several ER visits, including a traumatic one where she couldn't even walk without agony. After reviewing her research, Dr. Wagstaff agreed to perform another laparoscopy, warning that if nothing was found, he'd have to discharge her from his practice.
When she woke after surgery, the nurse confirmed what she'd suspected-it was her appendix, with a chronic, subacute infection. The appendix was extremely long and densely adherent, and her cecum was "floppy" rather than properly attached to her abdominal wall. This abnormality explained why it hadn't shown up on scans. Despite this vindication, Max and she eventually parted ways, both carrying guilt that they later began to absolve during a chance meeting years later.
Chapter 9
Finding Purpose in Pain
Norman grew up straddling two worlds-one online and one offline. The internet became an invaluable research tool after she got sick, connecting her with others sharing her experience. Through forums and social media, she discovered countless women telling the same story: doctors dismissing their pain, sexual difficulties, chronic nausea, extreme fatigue, and fear of losing jobs, relationships, and dignity. These women came from all backgrounds, many without diagnoses, united by the invisibility of their suffering.
In fall 2015, five years after her life-altering shower, she presented at Stanford Medicine X, a conference designed to make patients equal stakeholders with physicians and researchers. She shared her personal narrative and journey through the healthcare system, drawing on her unique perspective as someone who had worked in healthcare. The conference connected her with other "medical zebras"-patients with rare or incurable conditions who had become pioneers in their own care. These extraordinary individuals had transformed their diseases into purpose, becoming advocates and teachers.
Norman stopped fighting her limitations and designed an entirely new life. She adopted Whimsy, a rescue dog with emotional problems-"we're an ideal match." Taking responsibility for her forced Norman outside daily, even when walking was difficult. She embraced afternoon naps, found foods her stomach could tolerate, drank more tea, and went to bed early.
She realized she could either keep failing at living her old life or create something new. When she lost something, she imagined "another space opening up inside of me" where something new could grow. Still, she allowed herself to feel sad or angry when necessary, especially when declining things she wanted to do.
On her tenth anniversary of legal adulthood, she reflected on her journey while soaking in a morning bath. Comparing her teenage aspirations to her current life, she realized she'd achieved many things from her youthful list: fulfilling work, living by the sea, having a dog, amassing books, traveling, maintaining close friendships. Her brother was happy, and she'd even experienced love with someone who valued her mind over her appearance.
What she hadn't anticipated was losing her health-the pleasures of food and sex diminished, dancing only briefly reclaimed. Her body had become a sieve through which life passed, losing potency with each strain. Still, she found wisdom in her therapist Jane's affirmation: "There is an incredible freedom in letting go of the demand that this moment be anything other than what it is."
Standing before the mirror, she examined her reflection-neither fully hers nor her mother's. She wondered what lived inside her waiting to take her, and what kept her alive. Despite everything, she remained "absurdly alive," existing in a moment she couldn't yet categorize but was fully present for.
