Body

Published on July 28th, 2021 | by Jessica Phillips Lorenz

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RIP’d Off

I read about my daughter’s death as she sat on the couch a few feet from me, begrudgingly playing a math game on her tablet. Frozen, I stared at a photo my husband had taken of us when she was in cancer treatment. It must have been toward the end of her last round of chemo, based on her peach fuzz and the hope in my tired and trying eyes.

There is a kind panic that originates in the skin, like shrink-wrap under a heat source. What I was reading was phrased like an obituary and I hovered above the words. Had my daughter not survived the cancer that had come so close to killing her? Was I in some sort of dissociative denial propelled by grief? Was she real? Was she here?

I have felt this taut sensation of shock and disbelief before. We were in yet another Emergency Department of yet another hospital when doctors pulled my husband and I into what was called “The Family Room.” “Nothing good happens in this room,” I thought. “The furniture is too nice.” I remember my husband, who works in film and television saying, “That’s not how they shoot these scenes. That’s not how it’s done.” He longed for the comfort of an editing bay and the ability to cut. I hovered then too, trying to account for the unaccountable fact that we had just been told that our six-year-old daughter had cancer. I looked at her that day with the same unmoored fears: Is she real? Is she here?

Photo by Shot by Cerqueira on Unsplash

But now, more than three years have passed. I scrambled to survey another surreal reality: Schools are broken now. More broken, anyway. That’s why she’s on the couch. These days we all wear masks outside of hospitals. That’s right. How odd. Wait… Had I just imagined a tween-ager launching an eye roll in my direction? Yes, it was coming back to me. The world isn’t working right now. We all live inside. Everyone is afraid of germs—not just us. And so many people are terribly sick. But not her—she’s ok. I stare at her breathing; both she and I. Suddenly, gravity grabbed me by the ankles. Every switch-a-roo movie had become as plausible as a documentary. Sure, a thirteen-year-old could wake up in the body of an adult, the result of a wish granted. Why couldn’t that happen? Mothers and daughters switch bodies all the time. It just takes a generation or two instead of one especially “freaky” Friday. Subway doors could slide open letting commuters off to an alternate path, another lover, a different life. There are so many ways things can play out differently. Maybe denial is a creative way of squinting at the moments in life that are as true as they are absurd.

That’s how I found myself reading a post on Quora—a shared community website—which sold me in an admittedly grabby headline, “You’ll never believe how I found out my husband cheated—My daughter told me right before she died.”

I quickly scanned the “article” where I saw some familiar words and phrases. It said my daughter had died from Burkitt’s Lymphoma—the actual disease she was treated for but has NED (No Evidence of Disease) for the past three years. It claimed that she died shortly after revealing to me that my husband had been unfaithful. In this artifice, they were her dramatic last words. None of this was true. But the photo was real. As were the first few sentences, which in fact, I realized I had written and published a couple of years earlier. I looked back at the couch. There she was. Dimples, quirkiness, long thick brown hair. Simultaneous relief and gratitude collided with the realization that our identity had been stolen. We had been copy-pasted, plagiarized and used for profit. When you see a photo of yourself with your “dead” child, it’s hard not to feel a personal sting. “Who would do this to me?” I thought. As I read further, I remembered something that has comforted me most of my adult life: This has nothing to do with you.

my daughter’s hospital bed

My mind was reassured by the simple, grotesque truth: It was just a stupid scam. She is real. She is here. At the end of the lies was a link to some sort of “How to Know If He’s Cheating” site with a paywall eagerly awaiting credit card info.

In poorly written English, listed under the heading “What is the strangest way you found out your significant other was cheating on you?” was the fabricated post. This fake story apparently seemed just true enough for thousands of people to believe it. Or at least want to believe. What would be worse than to have your dying child tell you your partner had betrayed you? It would be so universally bad that it might help a person feel a bit better about their own hard life, “Hey, at least I’m not that lady.” I bet it felt good to hate my Fake Husband. Fake Husband was getting around with all these women he met online while Fake Me was taking care of our Fake Dying Child.

Actual Husband was terribly upset. As he scrolled through the comments, he shook his head saying, “All these people think I did this to you.” The comments were full of revenge plots and karmic retribution. It was a barrage of a cruel sort of kindness that comes from betrayed people attempting to comfort one another. Strangers started to rally a support community around my imagined broken life—just as strangers had rallied around my real one. As Actual Husband scrolled, I pointed out with a wink that one lady simply wrote that she thought I could do better. I was almost impressed with my Fake Husband’s ability to juggle working all day and sleeping at the hospital at night with multiple affairs. Actual Husband and I tag-teamed being with our daughter day and night for several months as she went through intensive chemotherapy treatment. Our then three-year-old son was living with grandparents so we could get through the minute-to-minute marathon of our lives. Actual Husband and Real Me didn’t see each other for more than a few transitional moments a day. High fives or brief collapses at the start and end of hospital shifts. Somehow Fake Husband sure had a lot of time on his hands and he knew what to do with it.

Sadly, real husbands and real partners and real wives do crumple under the duress of having a child with cancer. I’ll never forget the anger and screams I heard through the hospital walls as parents lashed out in their grief at one another. I heard a mother scream to whom I assume was the sick child’s father, “NOW you come here? GET. OUT. OF. HERE.” It wasn’t the words that were haunting. It was a vocal quality and tremor I have never heard before. Swirling with loss and fury, it was a pitch both high and low at the same time. Then I heard something or someone slam into the sanitized wall behind me. Later, I saw the doctors speaking in hushed tones to the mother in the hallway. I heard the words “home” and “comfortable.” I knew that it meant it was the end of the child’s treatment, the beginning of hospice. The doctors stood in a practiced formation of body language. If that moment were a painting it might be called “There is nothing else we can do.” But maybe “Untitled” would be enough. My daughter was in isolation at the time and I rarely left her room. The next morning, I walked down the fluorescent-lit hallway to get fresh, weak coffee and I saw the mother weakened by the news. Or weakened by her screams to her child’s father. Or both. A loosely woven shawl half covered her shoulder as if she dressed in a dream state, evoking a lost-in-time period. Her tichel had slid back revealing a sliver of her dark silver curls. As she dragged herself past me, I considered reaching out to touch her arm to let her know she was not completely alone. But I didn’t. Hours later, the next time I left my daughter’s room for fresh weak coffee, the cleaning staff was wiping down the walls and sanitizing her child’s empty bed.

Often one parent is left to manage the care of the child. The other parent, if there is one, is forced to try to keep up with job responsibilities and the grind of being a functioning person. As lousy as working from home has been during the pandemic, you haven’t seen anything like a parent taking a work call, using their work voice, while pacing the hallway of a pediatric cancer ward. If there are two parents, they may start living separate lives with their separate griefs, drowning alone together. If there is just one parent or grandparent, they drown alone.

Photo by Janko Ferlič on Unsplash

With my outward facing anger, I began tilting at the internet’s windmills. Searching for the enemy, the villain, the liar. It didn’t last long. Of course, I reported the fake article to the host website, demanding it come down. I pleaded with strangers in writing groups and cancer groups so waves of individuals logged on to report this falsehood, which they did. I filed a copyright infringement thingy. I let the original publication, from where my writing had been cribbed, know.

I never would have known about the fraudulent post without the help of a chivalrous internet truth seeker. A tip of a ten-gallon hat in the wild west of social media came in the form of an email that read:

“I’m hoping I’m not the first to notify you about this but someone is using pictures of you and your daughter… and it’s had hundreds of thousands of views.”

Quora, from what I can gather, is a lesser Reddit? I don’t know either site. I have been too busy navigating community sharing sites for caregivers of children with pediatric cancer or helping to advocate for new, less invasive treatments and more equity in care. Within twenty-four hours, the post came down, though I have no idea how long it was out there before we found it.

My own essays haven’t enjoyed “hundreds of thousands” of views. When I first started writing about my family’s experience, I felt compelled to use photos of my daughter and me. She was my kid. I wanted people to see us. This is what pediatric cancer in my family looked like. We are real. We are here. And a weird thing happens during cancer treatment, kind of like during a pandemic, you almost get used to it.

my daughter’s hospital schoolwork

I was horrified by this Quora fiasco, but it wasn’t even the first time my kid’s photo had been stolen—in 2017, someone on the other side of the world created a fake Go Fund Me using our story to lure browsers to “donate.” In fact, pediatric cancer families are notoriously preyed upon. There is just something about that smiling bald kid that disarms. It sells. It also motivates millions of people to support amazing, worthy causes such as The Make A Wish Foundation, The Ronald McDonald House, St. Jude’s, and The Hole in the Wall Gang Camp. Childhood cancer is a quick, nonverbal story. If you see a photo of a bald child with a feeding tube coming out of their nose, you can figure out what’s happening. It is rare, heartbreaking, and very expensive. There are plenty of cruddy childhood diseases out there but not all of them are as easily identifiable. Childhood cancer clicks with the familiarity of a crappy hand dealt. A dear friend has a daughter with a dangerous and severe form of epilepsy. For years their family has lived on the edge of cliff, but you wouldn’t know it to look at them. You can’t tell from a photo.

my daughter’s hospital pillow

You won’t see her face here.

If I am honest with myself, I’ve also used our image. I’ve used it to tell our story, to get attention from editors, to build my own readers, to advocate. But if anyone is going to give voice to the crappy hand we were dealt, it’s going to be me. Not some stranger. Not some scammer. Me.

I watch my daughter now, and watch her grow more into her tween-ness. You can’t ever scrub the internet fully clean. I wonder what she might think if she were to stumble upon a story of her own death. Maybe she would embrace her post-modern Tom Sawyer moment—walking into her faux-funeral? Or maybe she would be angry with me. Her bald, smiling image didn’t post itself, did it? Or maybe she will look in the mirror and ask, “Am I real? Am I here?”

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About the Author

Jessica Phillips Lorenz is a writer, educator, and cancer-mom. Her work has appeared in Real Simple, Parents.com, Romper, MUTHA and a theatre festival for babies in Northern Ireland. Jess is a member of the Coalition Against Childhood Cancer, Momcology and Emerging Artists Theatre. She lives in New York City with her husband, two children and pet snail.



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