She said I had cancer, and an eating disorder, and pneumonia. I didn’t realize it was abuse until years later

I felt the cold metal of the tool through my shirt as she checked my spine for deformities. I was filled with panic, and a certainty that I had scoliosis. I pictured my spine twisted. Would I need a back brace? Eventually a wheelchair? I got lightheaded and said I needed to stop the test.

The article I’d been assigned to write on a new scoliosis clinic didn’t require in-person interviews. But I’d just earned a graduate degree in journalism, and I was eager to prove myself to my Pulitzer prize-winning professors. So here I was at the clinic. When I’d suggested to the physical therapist that she test me for scoliosis so I could describe the exam in my article, she’d been pleased.

After prematurely ending the exam, I still felt like I was about to pass out. For a minute, I couldn’t even see. I was led to a chair and handed a glass of water. As the dizziness subsided and my vision returned, I thought, Shit, shit, shit. This has never happened in public before. Soooooo fucking unprofessional.

I apologized to the woman with a lie: “I’m getting over the flu.” The truth was, I was having a panic attack because of childhood abuse, and I didn’t even know it.

* * *

Nearly two decades before I was tested for scoliosis, I sat on a plastic exam-ro­­om table with my T-shirt off. Dr Wirtz, who also happened to be our neighbor, felt my left breast, then my right. I was 10 years old and more nervous than embarrassed. Dr Wirtz was the fourth doctor I’d been to in our small Wisconsin town, and I hoped he wouldn’t say my barely grape-sized left breast made me too sick for school.

My mom was always saying I was too sick for school. When I was six and my parents divorced, I missed half the first grade because she was convinced my stomach pains were caused by something deadlier than lactose intolerance. To her, a cold was pneumonia … unless it was actually pneumonia, in which case it was something worse.

As Dr Wirtz poked my nipples, my mom filled him in on my paternal history of breast cancer. The disease had killed my grandma, great-grandma and great-great-grandma. I thought about my grandma’s open coffin. She was the first dead person I’d ever seen. But the fact that she was dead didn’t frighten me. What scared me was how, two years earlier, a doctor had chopped off one of her breasts and made her wear a wig.

A week or so after the appointment with Dr Wirtz, my mom asked my babysitter to look at my breast. I’m sure my babysitter, a popular high-schooler named Shauna, thought it was a weird request. My mom had a charismatic way of getting people to do stuff, though. She called me over and lifted my T-shirt. “Look at this; isn’t it strange?” she asked Shauna, touching my breast and getting her to do so as well. Shauna shrugged her shoulders and played it cool. “Nope,” she replied. “I was uneven at first, too.”

Dr Wirtz wasn’t worried either. He’d told her I was just growing, and the ultrasound backed him up. No cancer. But the fact that babysitters and doctors can never be 100% certain is unbearable to people like my mom. She hired another babysitter, found yet another doctor, and frantically and forcefully prayed over my breast in tongues every night before I fell asleep.

The next doctor – a specialist, this time – agreed with Dr Wirtz: my development was right on schedule. At my mom’s insistence, he and his team ran lengthy tests, but didn’t find anything wrong. My mom was still sure I had cancer, and by this time so was I. The specialist told her to bring me back in six months if my other breast didn’t start growing.

I trusted my mom and prayed God would heal me. In the name of Jesus, please take away my breast cancer, was on a constant loop in my head. I assumed I’d drop dead if I went too long between prayers.

Facebook Twitter Pinterest After having prayed nearly non-stop for six months that cancer wouldn’t kill me, I would have preferred it if my mom was right. Photograph: Joe Gough/Narratively

When my other breast eventually started to grow, my mom took me back to the specialist anyway. The cancer was clearly spreading.

This time, my dad met us at the hospital. He was very concerned. When the doctors saw my breasts matched in size, they weren’t surprised. Two little grapes. They ran one more set of x-rays to confirm that I was cancer-free – and that they were free of my mom.

I sat in the waiting room with my parents for the final-final result. I knew I had cancer. My mom knew. My dad nervously clenched his fists. Someone came out and gave us the news, and I almost cried out of desperation. I had thought I wanted to be healthy, but when I found out I was, I felt alone and confused. I wanted to be sick because sick people get more love and attention. I sighed in disappointment. My dad noticed my negative reaction and yelled, which he rarely did, “You want to be sick? Marisa, what’s wrong with you?”

He was so happy I wouldn’t die the way his mother had. He was so happy I’d live a long life. And he was so happy my mom was wrong. But after having prayed nearly non-stop for six months that cancer wouldn’t kill me, I would have preferred it if my mom was right. Realizing I couldn’t trust my mom was scarier than cancer ever was. If she was wrong about breast cancer, what else was she wrong about?

* * *

When I was 14, my mom wouldn’t even let me walk the dog around the half-mile residential circle we lived on. I could only go halfway around or I’d get kidnapped. Or the dog would get kidnapped. I don’t even know. I’d stopped arguing with her, even though I’d begun to realize she was wrong more and more. She still believed I’d had breast cancer a few years earlier. It was gone by this time, of course, because God had healed me one night as televangelist Pat Robertson’s voice boomed from our upstairs radio.

When I was at my dad’s every other weekend, I didn’t have to take on my mom’s paranoia. I got to be a regular kid who hung out with cousins and watched MTV. I told my dad I wanted to live with him, and that’s all he needed to hear. We took my mom to court for primary placement.

My mom was so good at combining fact with fiction that even I got confused what was real sometimes.

I was introduced to my very own court-appointed guardian ad litem. I nicknamed her “The Shark” because her job was to fight for my best interest, and only a bloodthirsty animal could defeat my mom. The Shark interviewed me several times to make sure living with my dad was what I really wanted. Once, she asked me to confirm this in my mom’s living room. I sat tensely on the designer couch, knowing my mom was listening from the other room, ready to pounce. But I didn’t waver. Eventually, The Shark was so confident my dad would win that we decided I didn’t have to testify at the hearing.

The morning my parents went to court, I went to school – expecting to be picked up and packing for my dad’s by the final bell. But that’s not what happened. I don’t remember who broke the news to me. I just remember my mom smiling self-righteously and gloating about successfully representing herself. Even though my dad, grandparents and my guardian ad litem sided with me, the judge sided with my mom. He said I was doing so well in school and needed stability. I felt powerless and blamed myself. I should’ve gone to that hearing.

Near the end of my senior year of high school, my mom discovered I’d been plotting to attend the small university in Michigan where my grandparents taught. She lost it. She wasn’t going to let me go ­– especially not to people who’d testified against her in court. She thought she could stop me, and the level of control she had over me disgusted me. I rebelled by not eating at the dinner table. I’d take my plate to the living room and eat while watching bad sitcoms. My mom decided this new behavior – combined with my sometimes finicky eating habits – was similar to that of eating disorder patients we’d seen on “Dr. Phil”. She tried to convince my latest doctor that I’d die without immediate in-patient treatment.

Dr Locascio’s Band-Aids were Sesame Street-themed and he treated me like a little kid, even though I was 17. He was nice and funny, but he never talked to me without my mom present. When my mom abruptly announced my “eating disorder”, I rolled my eyes, but Dr Locascio didn’t notice. He was already looking at my medical history and realizing I’d always been a bit underweight. Maybe there was something to my mom’s theory.

Seeing she had a chance, my mom started blabbering on about how I didn’t drink soda or eat pork or seafood. I liked salad more than any kid she knew, and I ordered a small cone at ice cream shops. And then there was the foot thing. Sometimes the outer edges of my feet were cold and red. “Poor circulation is a sign of anorexia, right?”

I began to zone out. This wasn’t happening. I wasn’t here. By now, my family, friends and I had started referring to my mom as “overprotective” and “a hypochondriac” because she took me to the doctor for every little thing. But my mom was so good at combining fact with fiction that even I got confused what was real sometimes. I started to get dizzy. Almost passed out. Dr Locascio helped me lie down while my mom continued talking. He didn’t realize my lightheadedness was one of countless panic attacks I’d have in my life when dealing with medical-related stuff. Instead, he thought I didn’t eat enough for breakfast – just like my mom said.

Facebook Twitter Pinterest Now I just have journaling and breathing exercises to calm myself down and remind myself that I’m probably not sick. Photograph: Joe Gough/Narratively

Although Dr Locascio agreed I had an eating disorder, he didn’t admit me to a clinic. My mom found a way around that. She formulated a plan to keep me under her control. She’d fly me to some eating disorder clinic-of-the-stars in LA and watch over my shoulder as I checked myself in. This plan wasn’t a secret, and I slammed doors and yelled until my throat burned every time she brought it up. We always kept our windows open in nice weather, and the neighbors called the cops during a particularly bad fight. Two uniformed men came to our door, annoyed to be making a house-call for a mother-daughter dispute. There was no use trying to explain what we’d been fighting about. My mom was charming, and I had no bruises. They left.

I wanted to run away, but I knew I couldn’t. My mom would just send those cops after me. She’d once called the police on my dad when he forgot to call her and tell her we’d made it to his place safe. Their tactical flashlights had scared me awake.

At the California clinic, I could barely speak because of all the screaming. It was my 18th birthday. Legally, I was an adult and it was up to me; but it didn’t occur to me I had a choice. Saying “no” had never worked in the past. Why would it now?

After checking in, I was in shock. Then, crying uncontrollably. Out of protocol, a friendly nurse confiscated my shoelaces and sweatshirt drawstring so I wouldn’t kill myself.

The doctors were good in Los Angeles, though. They sent my mom home right away. They knew I didn’t have an eating disorder. The head physician invited me into her office, and from behind her large wooden desk, she told me I didn’t have to have contact with anyone I didn’t want to have contact with – including my mom. She was the first person to ever tell me this, and the anger I felt about the whole disaster was suddenly vindicated.

She explained that Munchausen syndrome by proxy is a rare form of abuse where a caregiver invents illnesses in a child.

Two days later, I left the clinic in an airport shuttle with a $10,000 clean bill of health. This was the first time I’d ever been on my own. My dad had paid for my flight to my grandparents’ over the phone. I was free. I boarded the plane wearing my recently de-draw-stringed sweatshirt. I was so sure of myself. But then I spent the entire four-and-a-half-hour flight clenching my armrest, trembling and worrying I’d go into cardiac arrest, like Dr Phil said sufferers of eating disorders were doomed to do. Maybe my mom was right. Maybe I was the crazy one. Or maybe I was just as crazy as my mom. These were the thoughts I’d struggle with for years to come.

* * *

My panic attack at the scoliosis clinic convinced me I needed help. I found a therapist named Katie – 40ish with short, red, choppy hair. The artwork in her office was hung too high. I told her this, and she didn’t take it personally. She knew it was just my anxiety talking.

When I first described my mom to Katie, I used the words I grew up with: “She’s just one of those really overprotective moms,” I said. “She loves me too much.”

But when Katie heard the details of my childhood “illnesses”, she gave me another term.

“Have you ever heard of Munchausen by proxy?” she asked.

I laughed out loud. “That’s where the parents poison their kids, right?”

Katie didn’t laugh. Instead, she explained that Munchausen syndrome by proxy – classified under “factitious disorder imposed on another” in the latest American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – doesn’t always, or even usually, involve poison. It’s a rare form of child abuse where a caregiver (usually a mother) invents or exaggerates illnesses in a child for sympathy and attention. The caregiver wants to be seen as a hero – fighting to save the child – and views the child as an extension of him or herself, instead of as an individual.

Katie said it was pretty clear to her that I’m a survivor of this form of abuse. I didn’t want to believe her.

I crossed my arms and legs tighter and picked at the cuticles of my ring fingers enough to draw blood, rationalizations and denials racing through my mind: Abuse? How could this be true? My mom loves me! It’s obvious. Maybe my memory is wrong. Maybe there weren’t so many doctors’ visits and tests. Maybe I’m the exaggerative one.

I left Katie’s office and ordered my childhood medical records. Within two weeks, a three-quarter-inch stack of papers confirmed my memories and forced me, at least momentarily, to accept the truth.

I was never seriously ill growing up. Never even really had symptoms. I leafed through photocopied pages of typed and handwritten medical notes – some with recommendations that my mom see a therapist. The doctors’ words are concise, objective and unemotional. Holding physical evidence of emotional abuse is rare – often impossible – yet this was what I was doing.

I was furious – not only with my mom, but with all the adults of my childhood. Why didn’t my teachers question my absences? Why didn’t the fucking doctors stop testing me for stuff they knew I didn’t have? Why didn’t anyone call my dad? I was also angry with myself. How didn’t I know this was happening to me?

After a few years of therapy, the anger is gone, but my self-doubt and anxiety remain.

My mom is now “dying”, and our monthly phone calls revolve around her sharing detailed and opposing descriptions of her countless, incurable physical ailments. I usually let her talk because I know she’s sick – just probably not sick in the way she believes. Confronting her with the idea that she’s mentally ill and has exaggerated her physical symptoms – as well as those of my childhood, of course – has gotten me nowhere. I’ve never used the word “abuse” with her. There’s no point. Doctors who aren’t on her side are wrong. Anyone who isn’t on her side is wrong.

When it comes to my body, I still catastrophize any physical imperfection. Now I just have journaling and breathing exercises to calm myself down and remind myself that I’m probably not sick.

But sometimes I forget to journal or breathe. I have a small mole on my left cheek that my dermatologist generously calls a beauty mark, but I believe it’s a precancerous growth that will have to be removed. I regularly picture an absurdly large area encompassing the mole being sliced out of my cheek like a piece of pie. After the surgery, I’m still sick and suddenly sickening to look at – left with large, railroad-track scars and a lopsided eye from a haphazard stitch-job. I kill myself rather than go through chemotherapy.

I know I imagine things like this because I was abused, but I don’t always feel like I was abused. Too often, I still think the way my mom trained me to think. It’s hard to feel something you can’t physically see or describe without hauling around medical records. Sometimes, I wish she’d just poisoned me and eliminated any doubt.

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