Sunday, April 28, 2013

the battle he didn't choose

All photos are by Angelo Merendino and are used with his permission


Jennifer Merendino was back in the hospital again. It was a warm May morning, and the 39-year-old was a few days into yet another stay at Memorial Sloan-Kettering to treat her metastatic breast cancer. It had spread to her bones by then, making it hard for her to stand. But she was standing then, in front of a mirror in her hospital room, while her husband, Angelo Merendino, prepared to shave her head before she lost her hair to chemotherapy again. He stood behind her, wielding an electric razor in one hand and holding a camera with the other, finger on the shutter.  

He said, “I've got to make a quick photo of us doing this, of you and me.” She assented, holding onto a support pole attached to the bathroom wall. “I just fired off two quick photographs, then I put the camera down.” The resulting photo was one of many black-and-white portraits that comprise “My Wife’s Fight With Breast Cancer,” which documents, through Merendino’s lens, Jennifer’s 20-month illness and eventual death at age 40 in December 2011.

When Merendino began to post the photos chronologically to his Facebook page leading up to the first anniversary of her death, his friends, family, and fans had the agonizing experience of watching her die, in real time, again—a breast cancer story with a starkly different ending than most that reach the public eye: triumphant survivors bedecked in pink ribbons.   

As that one-year mark approached, Merendino was living in a cramped apartment in Hell’s Kitchen, two narrow rooms with noticeably sloped floors. (He recently moved back to his native Ohio.) Photos of Jennifer from a recent exhibition overwhelmed the space—there were frames, cocooned in bubble wrap and duct tape, stacked on the floor and leaning against the walls, impeding access to the bathroom and kitchen. The only free space was a path that allowed Merendino’s desk chair to move between two computer monitors, the larger of which he was using to edit and organize his complete photo collection of his wife. Still more shots—the photo of Jennifer and her father in law clowning in wigs, the couple curled up together on a couch—filled the walls. Merendino couldn’t move—or even look at his own body, tattooed with the date they met, their wedding vows, and a quote from shortly before she died—without stumbling over remnants of his wife.

Now “My Wife’s Fight With Breast Cancer,” is spreading Jennifer’s image far beyond Merendino and his apartment, fulfilling a promise he remembers making to her the day before her death. "I told her the world was going to know about her,” he said. In the last few months, his photos have trickled into the news cycle, featured at CBS, BuzzFeed, the Huffington Post, Upworthy, The New Yorker, the New York Daily News, and a host of international outlets. More than 63,000 people follow his Facebook page. Merendino handles all press requests. He publicly thanks and links to every outlet that covers his story and intersperses these thanks with more photos of Jen, as well as newer shots of his sprawling immediate family. He is a widower, grieving in public—and his grief is giving Jennifer a second life.

There is no cure for stage IV breast cancer; a “good” outcome is preventing tumors from growing so that patients can continue to live with the disease, at least for awhile. Oncologists prescribe a course of chemotherapy that they think will keep the cancer from spreading. At the end of the treatment, patients get scanned. If everything remains stable, the treatment is a success. If the tumors grow, they try another treatment. Even when a regimen works, though, the end is preordained—a woman with metastatic disease will, eventually, die from it.  


This makes all the focus on “hope” and “awareness” in the pink-ribbon, “Save the Ta-tas” world of breast cancer fundraising community absurd to some stage IV patients. “Jen wasn’t crazy about the pink thing,” Merendino told me last summer. “It wasn’t that she thought it was bad, it just wasn’t what was real to us.” In Peggy Orenstein’s wonderful New York Times Magazine story on breast cancer awareness, she wrote, “[M]etastatic patients are notably absent from pink-ribbon campaigns, rarely on the speaker’s podium at fund-raisers or races.” The Susan G. Komen Foundation, the largest breast cancer charity, has donated only 3.6 percent of its budget to metastatic research in the past six years, Orenstein noted, though 30 percent of early-stage breast cancers metastasize. Still, some support groups exclude metastatic patients because they are too depressing for members without terminal cancer.

This all fosters a sense in the “mets” community that the women most affected by the disease are also the most underserved—and underrepresented. They don't fit into the upbeat survivor narrative. In Barbara Ehrenreich’s words, “[M]artyrs count for little; it is the ‘survivors’ who merit constant honor and acclaim. They, after all, offer living proof that expensive and painful treatments may in some cases actually work.” Merendino’s photos show that treatments can fail, and there are people who don’t want the reminder.

Last July, a cancer support center in Cleveland called The Gathering Place hung an exhibition of Merendino’s images, all pre-approved by staff there. But six days after the show opened, he was told to remove his work. He declined to discuss the incident, but it was covered in local media at the time.

Shortly after the exhibit was hung some of our volunteers (many of whom are cancer survivors) and our participants found it very difficult and emotionally upsetting to see the exhibition,” officials from the center wrote in an online statement. “Because our mission at The Gathering Place is to provide a peaceful, healing and nurturing environment where our participants feel supported and encouraged, we have chosen to remove the exhibit so as to not add to the emotional challenges a cancer journey creates.”

Though the show finished its run at another space in the city, the metastatic advocacy community expressed outrage at the thought that viewers couldn’t handle breast cancer imagery without a happy ending. Merendino’s images document the ravagement of Jennifer’s body—bald, bloated, cut, burned, poisoned. But they also show the persistence, as long as she retained consciousness, of her feisty spirit.

Metavivor, a prominent activism group that raises funds for research grants on mets, helped Merendino mount another show in Washington, D.C., in early March. Metavivor cofounder Dian “CJ” Corneliussen-James said that the show was well-received—one couple drove up from North Carolina to attend. But even some visitors with metastatic disease preferred the companion show depicting women living with, rather than dying from, breast cancer. They’d rather focus on living for as long as possible.

To Merendino’s mind, that’s exactly what Jennifer did, and he’s working on a book about her—with editing help from New Yorker photography director Whitney Johnson—to convey that. “I don't want to make a coffee table book. I don't want to make a book for photographers—I want to make a book that's beyond all that and is more about humans, and life" he said. “I want the world to see this amazing woman who was faced with cancer and her own mortality, and she chose to live." (Case in point: I was trying to find Jennifer’s personal blog, typing in variations of “My fight with breast cancer.” Her blog was actually called, “My life with breast cancer.”)

“I miss taking care of Jen,” Merendino said last summer, sitting at an outdoor cafe around the corner from the 105th Street apartment they shared, which in turn was just a short walk from the spot in Central Park where they married, six years and a lifetime ago. “It was the best time of my life. I think we both got to know happiness in a way that—mortality was right in our face, so we could either be angry, and rightfully so on a lot of levels, or we could live every second.” Now, he lives for both of them.


3 comments:

  1. Kira.
    Your voice here is the guarantee that Jennifer's will survive. Exactly what a documentarian's job should do. Thanks for coming up soft and kind and compassionate in the viewscape of columnization.

    ReplyDelete
  2. Alex!! Hope you're well.

    ReplyDelete
  3. breast lift delhi surgery website details virtually all aspects of cosmetic surgery

    ReplyDelete