Some Kids Left Behind: A Survivor's Fight for Health Care in the Wake of 9/11360
Some Kids Left Behind: A Survivor's Fight for Health Care in the Wake of 9/11360
On September 11, 2001, high school senior Lila Nordstrom watched from her classroom’s window as the Twin Towers, mere blocks away, fell. Weeks later, at the urging of local officials and assurance from the EPA, Lila and her three thousand classmates were returned to their school—even though the air was thick with toxic debris, dust, and smoke.
In this remarkable, empowering memoir, Lila shares how the illnesses and deaths of her classmates related to the effects of the 9/11 cleanup spurred her into action. She created StuyHealth and became involved in the fight for the Victim Compensation Fund, working alongside first responders and heavyweights like Jon Stewart, Hillary Clinton, and Nancy Pelosi, proving at every turn that her survivor community also deserves recognition and mental and physical health care and that her voice too deserves to be heard.
This timely tale reveals how tragedy lays bare the American health care system and how corruption and misinformation continue to fail victims of tragedies. An honest, at times humorous guide to advocating for one’s self and one’s community and navigating the cutthroat world of legislation and health care, Lila's story begs us to consider how we as a nation treat our vulnerable communities and how all victims of all disasters deserve care, truth, and respect. Also included is a section on the meaning of advocacy work, what it means to be an active citizen, and how to support a cause you believe in.
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About the Author
Congressman Jerrold Nadler represents New York’s 10th Congressional District, and has served in Congress for twenty-nine years. He is the current chair of the House Judiciary Committee, and served for thirteen years as chair or ranking member of its subcommittee on the Constitution, Civil Rights, and Civil Liberties. He also served as the ranking member of the subcommittee on Courts, Intellectual Property, and the Internet, and was the vice chair and founding member of the House’s Lesbian, Gay, Bisexual and Transgender Equality Caucus, and coauthor of the James Zadroga 9/11 Health and Compensation Act of 2010, later leading the fight for its reauthorization. Congressman Nadler resides in New York City.
Congresswoman Carolyn B. Maloney represents New York’s 12th Congressional District, and has served in Congress for twenty-eight years. The first woman to represent her district, Congresswoman Maloney was also the first woman to chair the Joint Economic Committee. She currently serves as chair of the Committee on Oversight and Reform and senior member of the House Financial Services Committee and the Joint Economic Committee. Maloney cofounded the House 9/11 Commission Caucus where she pushed for the legislation that created the 9/11 Commission. She also worked to create and fund what would become the World Trade Center Health Program, and fought to expand and reactivate the September 11th Victim Compensation Fund. Congresswoman Maloney sponsored the James Zadroga 9/11 Health Care and Compensation Act from its earliest iteration in 2006 to its passage in 2010, championing its reauthorizations in following years. Congresswoman Maloney resides in New York City.
Read an Excerpt
My senior yearbook photo was taken on September 10, 2001, and I rejected it immediately. It was only a couple of days into the school year so I hadn’t assembled the “look” I was hoping to be remembered by. Not that my ideal outfit was much of an improvement. It was just that when I looked at the picture that would identify me for posterity, I looked goofy. Young. Naive. Plus, having examined the photo with a self-conscious teenage eye, I was sure I looked fat. I didn’t want to be remembered as young and fat. I wanted to be remembered as a mature, sophisticated, latent genius.
We weren’t supposed to get our pictures taken twice unless something went drastically wrong on our first try. Acceptable grounds for a reshoot included a black eye or a broken nose, a hospital-worthy illness, or a morning-only natural disaster in Queens that kept residents of somewhere far away like Bayside from getting to school on time. Somebody behind me attempted to excuse themselves on the basis of their distress over a bad grade. At our school for overachieving obsessives, it was the only time in my entire high school career that somebody tried that defense and nobody sympathized. We, after all, were too busy trying to show our best angles.
Rumor had it that sneaking into another session was easy enough if you casually walked in with a different homeroom, never mentioned your previous picture, and dressed entirely differently, so I stealthily began preparations to get my picture done again the next day. The next morning, I obsessed over my hair, wore more makeup than usual. I carefully picked out a new shirt. I even wore new shoes because, although they wouldn’t be visible, it felt important I complete the outfit. My idea of fashionable, remember-me-for-posterity, shoes? Silver Velcro sneakers that didn’t offer much in the way of support but went with everything. (Or, more accurately, clashed equally with everything.) There’s no accounting for taste.
Despite my careful planning, there were no pictures taken on the eleventh. My high school, just three blocks from the World Trade Center, was evacuated before the photo company even arrived.
High school in the age of Y2K was already weird. The end of my freshman year at Stuyvesant was punctuated by what was, until then, the most transformational mass tragedy of my lifetime: the shooting at Columbine High School that occurred in April 1999 in Littleton, Colorado. Before Dylan Klebold and Eric Harris went on a violent rampage through the halls of their high school, the most traumatic thing that had ever brushed up against our consciousness was when Mayor Giuliani tried to ban jaywalking. We fretted about how we’d ever make it to school under that kind of tyranny, but we laughed about it. When Columbine happened, the media told us that life for students would be different and we believed them; still, the tragedy felt foreign. Maybe we had known cute acts of in-school rebellion like pasting pennies to the floor of the swimming pool or selling passes to a mythical cafeteria on the roof, but we didn’t know anything about guns. How students could have had access to a veritable arsenal was beyond us. In New York City we all lived on top of each other. We didn’t have room for secret arsenals.
In retrospect I can read visceral fear in the voices of the news coverage from that April night. That’s because I now know what it’s like to feel that afraid. What I felt at the time was a tamer kind of alarm at the realization that every student interviewed on CNN in the aftermath of the shooting knew the difference between the sound of semi-automatic and automatic gunfire. I hadn’t even known there was a difference.
It was from coverage of that event that we learned that the rest of the nation knew everything about guns. They weren’t just for gangs. They hadn’t been just an urban problem after all. My classmates and I were urban and many of us had never even seen a gun outside of a police holster.
Twenty years after Columbine, school shootings are a regular occurrence, but it took me years to make the connection that the two experiences, Columbine’s and ours on 9/11, would leave us in the same place. We would both be vulnerable, at the mercy of our healthcare system and its massive gaps. This broken system would compound our trauma by offering an inadequate response to our needs and inducing years of Post-Traumatic Stress Disorder which, even without the environmental toxins and respiratory issues, would make anybody more susceptible to serious illness.
Whether or not you’re a free-market person, a single-payer health care person, a libertarian, a socialist, or something in between, it’s hard to ignore the fact that, when we look at America’s response to most mass tragedies, we’re not exactly a nation of heroes. We’re in the business of protracting the pain of victims in this country every day, and this fact is just as related to how we handle the aftermath of tragedy as it is to why we allow tragedy to occur in the first place. My story follows this pattern, but you could just as easily ask the kids of Flint, Michigan, about it. The kids of New Orleans. The kids of Houston. The kids of Puerto Rico. The kids of Parkland. The kids of COVID-era America.
When I finally got my school photo retaken, it was November. This time there was no strategy for sneaking into the line. My classmates and I all silently agreed that nobody would speak of the first session. We were all different people now anyway. My new “look” for the year was a gaze comprised almost entirely of nervous expectancy. I don’t remember what I wore.
As I sat in front of the drop and tried to smile, all I could think about was a comment my mother had made the week before at dinner.
“Just think, three months ago all we had to think about was Chandra Levy.”
We had discussed Chandra Levy for the entire summer. Levy, a twenty-four year-old intern at the Federal Bureau of Prisons in Washington, DC, disappeared in May 2001 and the case had caused a huge media sensation when details emerged that she’d been having an affair with US Congressman Gary Condit. The story was driven for months by the bungled police investigation, Levy’s wealthy and well-connected family demanding answers, and, frankly, a lack of other exciting news to talk about. To the press and to the public, her disappearance was sad but also salacious, one part soap opera, one part British murder mystery. I’d felt especially drawn to the story because, though our circumstances were different, Levy was young, like me. She was interested in politics, like me. At the time Monica Lewinsky was still a fresh memory, and Levy’s case was yet another reminder that politics were not a safe place for young women. My family followed the story of her disappearance with a calculated air of casual disinterest, feigning concern with other topics but nevertheless regrouping every night at dinner to compare the newest rumors.
At that November 2001 dinner, however, my only reaction had been, “Who?” We had entered a new century, after all. We had become different people. Grown up. Left those recent gossip items back in the past alongside historical events like the Cold War and Iran Contra and 1968. Back in the pre-9/11 world, where a relatable young ingenue’s murder could still be headline news and nobody ever had to think to themselves, is wearing new shoes a worthwhile risk to take if I might have to run for my life today?
The answer, by the way, is always no. If there is anything that makes months of sheer terror worse, it’s blisters.
Table of ContentsForeword by Congressman Jerrold Nadler
Foreword by Congresswoman Carolyn B. Maloney
Chapter One: New Shoes
Chapter Two: Fleeing
Chapter Three: Brooklyn
Chapter Four: Return to Stuyvesant
Chapter Five: Debris
Chapter Six: Beginnings of Memories
Chapter Seven: Another September
Chapter Eight: A Modern Network
Chapter Nine: The Tooth Fairy Angel of Death
Chapter Ten: Never Enough
Chapter Eleven: Coming Forward
Chapter Twelve: Compensation
Chapter Thirteen: The American Disaster Victim