Guest Blogger: Erica, Twin-Sister of Ethan
Here come the holidays! A time to be thankful and full of hope. Yet each morning, after restless sleep, I wake in fear of just how long I can keep my twin brother alive. I share his life story now because only awareness can save him and others like us.
Ethan was hard-working, charismatic and selfless.
His misfortune began abruptly in college when he suffered a freak traumatic brain injury playing football with friends. Beyond clinical expectations, Ethan awoke after many hours. It took months of family support and therapy but Ethan rallied; he was able to complete his college degree. He felt ready to pursue his passions and moved to Manhattan to become a stock trader on Wall Street. Ethan was immediately well-liked and enjoyed putting in long hours at work.
But then, Ethan was struck with two major emotional traumas: his love interest since childhood was one victim of a heinous mass murder and our mother passed away after a six-year battle with ovarian cancer.
Ethan was briefly hospitalized for depression. Our father contributed his personal savings to provide access to an intensive day treatment program to transition Ethan back to wellness. Dedicated to therapy and faith, Ethan made a comeback once again. He even began earning a six-digit salary at his trading firm and was blessed with a large support system of colleagues and friends. Finally, some relief and happiness.
Ethan had just arrived at his office in the Trinity building, across the street from the World Trade Center, when the first hijacked airplane struck the North Tower.
Ethan witnessed the horrific sights, sounds and smells: the twin towers in flames, people jumping to their deaths and running for uncertain safety among the crumbling towers, enveloped in the dust cloud. He recalls that it “felt like being inside a black and white movie because everything, and everyone, was coated in dust” and “the air tasted like metal.” But Ethan doesn’t remember how he got home that day.
In a distraught fog for many weeks, he experienced paralyzing flashbacks as he observed cleanup efforts from the windows of his firm’s temporary location. Gradually, Ethan became unable to get out of bed to go to work. Our family managed to support Ethan for a while until it became apparent he could no longer afford, financially or emotionally, to live in New York. He moved in with our sister’s family. Since our application for Social Security benefits on his behalf was denied, we continued to diminish family savings for Ethan’s medications, health appointments and living expenses.
We were elated to hear when the World Trade Center Health Program (WTCHP) was finally created, nearly 10 years after the tragedy, to assist 9/11 survivors and responders. A multi-billion-dollar federal grant is funded to cover medical treatment and follow-up, through United Healthcare, as designated by the James L. Zadroga 9/11 Health and Compensation Act of 2010.
This is what is publicized; however, we have found the reality to be tragically different.
By the time Ethan’s application trickled through a two-year process and he finally became a certified and eligible survivor, his progressive deterioration was requiring resources not easily found or afforded by family members alone. He had moved into our father’s home, confining himself to the basement, gravely disabled by severe PTSD and agoraphobia.
Countless professionals insist that there is still hope for Ethan. He requires comprehensive services as provided in an appropriate residential treatment program as well as access to PTSD-specific treatment modalities. Yet World Trade Center Health Program has refused to help. They consider residential programs out-of-network and offer no in-network equivalent services for the treatment of severe PTSD. Residential programs are ready to accept Ethan but are beyond out-of-pocket affordability by ordinary families. WTCHP offers only basic mental health benefits to most survivors and responders: coverage for a medication or two and occasional visits with certain outpatient doctors. Even after the WTC registry itself and New York City health department estimated 61,000 survivors in the disaster area likely experienced PTSD within six years of the tragedy, guidelines and medical billing remain severely underdeveloped for mental health care.
With our unrelenting advocacy, Ethan’s case is discussed almost weekly by the leadership of WTCHP and their governing agency, the National Institute for Occupational Safety and Health (NIOSH). We are told WTCHP is a “limited healthcare program.” Tragically, what is most “limited” is the amount of informed oversight by actual mental health experts.
Therefore, over the past 9 months, Ethan has endured 10 revolving-door, acute hospital admissions with only minimal improvement.
Most Americans also don’t realize that World Trade Center Health only recently began releasing funds to adequately aid physical injuries suffered by 9/11 survivors and responders as well. This deserving mission gained public attention last December, once spearheaded by Jon Stewart of The Daily Show. Awareness for mental health parity for the innocent people directly devastated on 9-11-2001 is long overdue! Mental health claims are even excluded altogether from a separate huge federal grant, the 9/11 Victim Compensation Fund.
Through the enormous tragedies my brother has overcome, the 9/11 disaster immobilized him and has cost him his quality of life to date. Our country just commemorated the 15-year anniversary of the tragedy; our family continues to suffer its effects daily. Now, our father is diagnosed with metastatic cancer as well. Our life savings and emotional energy are spent.
Ethan has been displaced to a sub-optimal Medicaid-based group home among developmentally delayed and severely schizophrenic patients. He is afraid and hopeless.
Yet Ethan is a proven survivor, many times over. He has a history of loyalty to his employers and compassion for others, despite the many trials of his own journey. He wishes to work hard in an appropriate treatment environment, regain life skills and earn the privilege to contribute to society. He desires to enjoy the outdoors without immense fear and, if possible, return to meaningful work.
New York’s Memorial Plaza has been completely restored with inspirational monuments of strength and renewal; lives that crumbled on that tragic day deserve to rebuild as well.
Please spread awareness of the desperate need for mental health parity for 9/11 victims and in our American healthcare systems in general. We would also greatly appreciate your consideration of a donation in support of Ethan and other survivors in need: