I grew up near Ground Zero. I worry about what that means for my health.
As our school grew overcrowded with parents holding their children close, we were brought up to the roof. The air smelled of ash and burned plastic. “What’s that?” I asked, pointing to where the lost monument once stood.
My 9/11 story continues into the days and weeks that followed. I incessantly asked my two moms, Maddy and Julie, if another plane was coming and if the apartment building we lived in, just 10 minutes from the twin towers, was safe. I’d spend the next several years afraid of planes in the sky and, when my moms didn’t answer their phones on the first ring, fearful they’d been caught in a burning building.
As it turns out, my childhood fears following 9/11 were valid but misplaced.
It was not a plane crash or burning building that threatened my family’s safety, but a silent killer — the environmental toxins released during and after the World Trade Center attacks. According to the World Trade Center (WTC) Health Program, a federal program that provides monitoring and treatment for certified WTC-related health conditions, more than 71,000 people have been diagnosed with physical and mental health conditions as a result of exposure to the dust, smoke, debris and trauma of the Sept. 11, 2001, terrorist attacks.
Two of those 71,000-plus people are my moms.
My moms loved our home in downtown Manhattan, in no small part because of our vibrant community of queer families there, a rarity in the early 2000s. While many New Yorkers left the city after the attacks, my moms decided we’d stay. We lived south of Houston Street, a zone now referred to as the “disaster area.”
Sixteen years after the World Trade Center attacks, Julie, who I call mama, was diagnosed with Stage 4 ovarian cancer, one of the medical conditions said to result from 9/11-related toxins.
In 2019, Maddy, who I call mommy, was diagnosed with head and neck cancer, another certified World Trade Center-related health condition. Maddy’s diagnosis erupted through our family like a lightning strike. Two moms with cancer. Two World Trade Center attack survivors.
Today, Maddy is in remission, but Julie died this summer. Her death has felt like something I am tumbling into — a black hole, an abyss. And that abyss widens when I face the truth head on: My sister and I — and so many other young people — were exposed to the same toxins as our mothers. We share the higher risk of cancers and other WTC-related health conditions, such as respiratory and gut diseases.
But there are probably other health risks facing young 9/11 survivors that have not yet been identified due to a lack of adequate research and data.
Up until this point, the list of certified WTC-related conditions eligible for coverage by the WTC Health Program has relied primarily on research involving the 9/11 responder cohorts. Of this group, 87 percent are male and all were adults at the time of exposure. This means that women and, in particular, children, the population that research suggests is most vulnerable to environmental toxins, have been significantly understudied.
As a result, conditions disproportionately affecting these groups are less likely to be covered by the WTC Health Program. For example, reproductive health issues and autoimmune diseases, ailments significantly more common among women, have been consistently denied coverage due to a lack of sufficient data, according to information provided by the World Trade Center Health Program Scientific/Technical Advisory Committee.
My sister and I are two of 35,000 children exposed to environmental toxins during and after 9/11. Lila Nordstrom, now 39 and founder of StuyHealth, a nonprofit advocacy group for students in Lower Manhattan during 9/11, was a junior at Stuyvesant High School, only five blocks from the twin towers, at the time of the attack. “It’s frustrating that so little of the WTC Health Program’s data is focused on this large cohort [of youth], and that, as a result, our 9/11 health needs are frequently overlooked or deprioritized,” Nordstrom explained.
What’s also missing as a result of the dearth of research on youth survivors is data on the long-term mental health effects on us.
In my experience, there is the mental health impact of the trauma of 9/11 itself, and there is the mental health impact of watching loved ones grow sick as a result of the toxins from the attacks. A study showed that one year after 9/11, those suffering from a loss experienced then were more than twice as likely to be diagnosed with such mental health condition as anxiety, depression or post-traumatic stress disorder.
But what about those of us suffering from a 9/11-related loss over 20 years later?
I was 22 when my moms had cancer at the same time. The experience fractured logic, eviscerated reason. I temporarily left my job as a management consultant and moved home to care for them. I kept meticulous track of concurrent doctors’ appointments, chemo and radiation treatments, and meal plans for my moms’ respective dietary needs. I slipped farther and farther away from my life as a 22-year-old and into the role of premature caregiver. A year later, I was diagnosed with PTSD.
Watching loved ones grow sick — and die — as a result of WTC-related health conditions will continue to disproportionately affect those of us who were young on 9/11.
In December 2022, a new WTC Health Program youth research cohort was established to study the health effects on those 21 or younger at the time of the attack. The goal of this new research cohort is to close the gender and age gaps in existing WTC-related research and understand the effect that 9/11 related toxins and traumas have had and will have on those who were children at the time.
This work is critical. “We deserve data on our population so that we can ensure the WTC Health Program is treating us equitably and fairly,” Nordstrom said. “We are frequently treated as less deserving victims of 9/11, which only compounds the complicated trauma many of us have around these events.”
Like me, she feels strongly that this youth research cohort is needed to gather the representative, longitudinal data required for equitable access to consistent coverage for youth survivors.
My 9/11 story has spanned my lifetime. It began at age 5 when I watched the twin towers fall. It was there when I was 10, breathless with fear that my moms would be killed in another sudden disaster. It was there when I was 22, caring for two moms sick with simultaneous cancers. And it is here today, as I grieve the loss of my mama, a loss so incomprehensible it reminds me of that morning when the towers fell.
But my 9/11 story hasn’t ended yet. It extends into the future, where I and the tens of thousands of others whose stories began on the third day of school, face known and unknown health risks.
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