I’m a 9/11 survivor. I still don’t know how these programs can help me.

Pedestrians walking through Ground Zero after the collapse of the Twin Towers on September 11, 2001.
Pedestrians walking through Ground Zero after the collapse of the Twin Towers on September 11, 2001.
Anthony Correia/Shutterstock
One of our best op-eds of the year was on 9/11 survivors.

I’m a 9/11 survivor. I still don’t know how these programs can help me.

First responders aren’t the only ones still reeling from the deadly attacks.
September 10, 2019

“What’s this for?” my primary care doctor asked me the week after Labor Day. 

He wanted to know why I was taking gabapentin – a medication used to treat epilepsy and prevent nightmares caused by post-traumatic stress disorder. So I told him, “It’s for 9/11-related PTSD.”

“9/11?” he asked. “But you’re so young. That was so long ago. How can you even remember what happened?” 

But I do remember 9/11. I’ve thought about it almost every day for 18 years.

Sept. 11, 2001, the morning of my 10th birthday, I made my daily trek from Bay Ridge to Tribeca to attend P.S. 234 – about five blocks north of the World Trade Center. 

My mother dropped me off with the rest of my fifth-grade class in our school’s courtyard. We lined up, prepared to head inside, and that’s when we heard the first airplane approaching. We all watched in stunned silence, paralyzed by the deafening sound of the plane’s engines and gazing up at the aircraft’s white underbelly as it glided overhead. Frenzied chaos ensued as it made contact with the north tower. 

I can’t remember what happened next. I only remember my mother returning to school to fetch me – and that at the exact moment we left the school building, the second plane crashed into the second tower. 

My mom and I took shelter in my friend’s loft off of Canal Street. We heard the towers fall from inside the loft. The screams of people running to escape its fall filtered into the loft like waves, slowly crashing into us.

Later that evening, my friend’s father surprised me with a chocolate frosted Entenmann's cake to celebrate my birthday. He had gone out as things began to quiet down earlier in the evening, to see what had become of our city, and found that a neighborhood bodega was still open, despite everything. 

Rubble, dust and asbestos lined the streets of lower Manhattan after the attacks. What had once been the World Trade Center was a Dante-esque pit of fire and smoke, one that burned for what felt like months on end. Determined to bounce back quickly, New York City did what New York City does best: It moved on. People returned to work and I returned to school. 

Eighteen years later, the World Trade Center has been resurrected. It has transformed from a heap of metal and silt into a modern, American-made triumph composed of One World Trade Center, several other very large office buildings, an underground mall, the Oculus transit center, reflecting pools where the twin towers once stood, and a museum to honor their memory and document the events that happened there.

But the attacks of 2001 continue to claim victims, as New Yorkers gradually develop illnesses stemming from the toxins they were exposed to when they went to clean out the rubble and search for survivors, or after they went back to their offices, schools and homes downtown. It’s estimated that by the 20th anniversary of 9/11, more people will have died of 9/11-related illness than those who died during the attacks. Survivors often are unaware of what resources are available to them, unclear on how they can apply for them and uncertain as to what benefits they qualify for.

This year, the New York City Fire Department will add the names of 22 firefighters who died from 9/11-related illnesses to the FDNY World Trade Center Memorial Wall in Brooklyn. It’s becoming more and more apparent that first responders are still feeling the effects of 9/11, developing respiratory illnesses and receiving cancer diagnoses

First responders aren’t the only ones who are suffering. “People don't really know that people lived there (in the area surrounding the World Trade Center),” Dara Gell, a close friend of mine and fellow 9/11 survivor who grew up in Battery Park City, told me over the phone this week. “People really have no concept that there were other people there.”

I wasn’t fully aware of what PTSD was until my freshman year of college, when I began suffering from flashbacks more regularly. For a long time, I only knew of PTSD as a problem military veterans suffered from. I didn’t know how PTSD worked and I certainly didn’t realize that I was experiencing it. Flashbacks, intrusive thoughts, nightmares and a constant sense of impending danger suddenly became a very real part of my life at 17. I didn’t address my issues with mental health care professionals because I didn’t think that what I was experiencing could even compare to what first responders were dealing with, and I certainly didn’t feel like revisiting my most painful memories. 

Three years ago, exhausted by my daily struggles with PTSD, I attempted to make use of whatever resources were available for 9/11 survivors. I’d heard you could receive some money for 9/11-related health issues through the World Trade Center Health Registry, which tracks the health of people who lived, worked or went to school in the area of the disaster. My mom signed us up for the registry the moment it came into existence. But when I attempted to find the resources I’d read about on the registry’s website, I found myself confused about next steps: Who do I contact? How do I get help?

Eventually, I found a phone number for the registry itself, but after calling it several times without getting an answer or even a voicemail recording, I gave up. Frustrated and without the financial means to pay for mental health care, I put my needs on hold. It wasn’t until this year that I finally decided to seek treatment for PTSD. 

Like all psychological or psychiatric treatment, it ain’t cheap. It costs about $125 per session to meet with my out-of-network PTSD therapist, whom I see roughly twice a month. I spend a $50 copay on appointments with my psychiatrist about once a month. The medicine I take to treat my PTSD, which includes gabapentin, the antidepressant Lexapro and Sonata (when insomnia takes over), cost about $30 per month. It all adds up to a monthly total of $330. I’m fortunate that insurance covers most of it, but imagine the costs you could rack up trying to seek care without coverage.

Gell also struggles with PTSD and has also paid out of pocket for her mental health care. Like me, Gell is enrolled in the Health Registry but lacks a general understanding of what other resources are available to her. “I'm sure if I contacted them, they would give me some other resources, but I really don't know what they are,” she said.

Another friend of mine, who also attended P.S. 234 and grew up in the area, and who asked to remain anonymous to protect her privacy, is enrolled in the World Trade Center Health Program, a federal program which provides medical monitoring and treatment for first responders and other 9/11 survivors. While seeing a psychiatrist roughly two years ago, she realized her mental health issues most likely stemmed from trauma she endured witnessing the attacks as a child. 

Her parents encouraged her to sign up for the Health Program to lighten her financial load – but things didn’t go as planned. Applying took close to 10 months, she told me. She was subjected to multiple phone interviews and a rigorous physical, and was required to submit all of her medical records, including records kept by the child psychologist she saw immediately after the attacks. Her application was accepted and after she was enrolled, she was sent a card and letter to present to her doctors, to let them know she was enrolled in the program. 

Neither she nor her doctors are clear about how she can claim benefits from the program, which she believed would operate as a secondary insurance. “I asked them (the World Trade Center Health Program) and they told me once your first insurance steps in, then you can use this card and it pays the difference,” she explained to me. “But my doctors have, so far, been baffled by it and have basically put it back on me to figure out, like, ‘I don't know how to take this, why don't you call them and figure out what I'm supposed to do with this?’”

She suspects this is because she now lives in San Diego, rather than New York City, where she assumes doctors are more familiar with the program. She hasn’t yet figured out how to fully access her benefits. “I probably just need to call the World Trade Center Health Program’s 1-800 number and be like, ‘What do I do?’ I just haven't done that yet,” she said.

Speaking with both of my friends about our experiences seeking help for 9/11-related issues, and seeing our collective frustration with the way information is dispersed and the lack of benefits we’ve received, I realized that most 9/11 survivors have no idea how to obtain funding or other resources.

Hopping around the numerous crudely built government websites for 9/11 survivors and victims and digging for tidbits of information is a drag. It’s hard to determine which fund or program is relevant to your needs and whether or not it can provide you with benefits. The city and federal government need to do a better job of informing us how we should be monitoring our health and how we can acquire resources, so we can prevent further harm. 

“It's hard for me to say what information was given out early on (following 9/11), because I was so young,” Gell said. “But now I'm an adult, and I still suffer from it and I don't know what resources there are. And, I think, of course, there's a responsibility (for the city to inform survivors), because this is still something that affects our city.”

Amanda Luz Henning Santiago
Amanda Luz Henning Santiago
is a staff reporter at City & State.