Monthly Round Up September 2021

Monthly Round Up September 2021

September marked the 20th anniversary of 9/11, and it was our privilege to welcome to the show retired NYPD detective Tom Frey. Following his rescue work at Ground Zero, Tom contracted Hodgkin’s lymphoma, and as a result of treatment for the cancer, he continues to live on borrowed time with pulmonary fibrosis.

As Tom told us, on that fateful day, “the bell rang and we all just went to work.”

It was a gut punch that day … and 20 years later. Two more guests in September also shared with us the health issues that keep them severely sidelined.

All three stories are heartbreaking. But, as is always our aim, get ready to be inspired …

Episodes Featured:

Episode 134: Sara Naveed is Fabulous & Fatigued

At age 16, Sara Naveed was hit by a car driven by a fellow student at her high school. At first, she felt shaken but OK … then slowly her teenage life began to deteriorate. At age 30, she has been left with the devastating, widespread pain of fibromyalgia. A chronic illness advocate, Sara is the creator of Fabulous & Fatigued: A Journal of Life with Fibromyalgia, Depression & Anxiety, in which she chronicles her journey from disbelief … “I was constantly crying, because up until that point in my life, I thought I was going to be okay. I looked at myself in the mirror, and I still didn’t have the concept of a chronic illness or invisible illness” … to feeling isolated and alone because both her family and her family doctor initially dismissed her pain and symptoms.

It took years for Sara to receive her diagnosis and finally to be believed, but through it all, she says, “I knew that I really had to do something. I really had to help people, and make people realize, people that are just newly diagnosed with these illnesses, that they’re not alone; that there are people out there that will hear them out. I want people to know that their life does not end when they get diagnosed. I want them to realize that, yeah, there might be certain things that they’re limited to, but there’s so many other things that they can still do. There are adjustments that you have to make, but you can still live a normal life.

“I look back at the Sara that was lost and confused when she got diagnosed — when her pain was diminished, when her mental illnesses were diminished. When she was constantly fed toxicity. She was so alone. She was isolated … And I really wanted to do something for her. And for anyone else in that situation.”

Episode 135: Defining Heroism – 9/11 First Responder Tom Frey

While very different situations, Tom Frey’s story aligns closely with Sara Naveed’s. It has only been in recent years that the causation of illnesses suffered by 9/11 first responders has been acknowledged by government agencies, and that finally those afflicted are being believed. Tom was working as an NYPD detective when he was called to action on that fateful day. He spent months searching through rubble in an environment which has now been officially deemed toxic. He developed cancer, which he battled alone — financially. The good news is that the cancer is in remission. The very bad news is that the chemo medication has resulted in a diagnosis of the fatal lung disease, pulmonary fibrosis.

In his interview, Tom recalls being given that diagnosis by a doctor who told him, “There’s nothing we can do for you.” Tom recalls: “I said to him, ‘Well, any medication?’ I thought he was going to add to my list of dozen medications. No, no medications or anything. He sent me home to die.”

Five years later, and reliant on oxygen … “Every breath you take is a reminder that you have this disease; every breath is work…”  Tom continues his heroic struggle with the same kind of determination that sent him running to the World Trade Center 20 years ago.  Like Sara Naveed, Tom’s diagnosis knocked him for six. He tells us how shocked and alone he felt. But, like Sara, he found support and community — in the Pulmonary Fibrosis Foundation, for which he works as an Ambassador, spreading the word about the disease and sharing coping strategies.

This episode was an especially important one for Lauren, not just because she’s a New Yorker, born and bred… but because on 9/11/2001, Tom left from his desk at the 13th precinct — on the block where Lauren grew up — on his rescue mission. We honor those whose lives were lost that day…and those who are still fighting for their lives, 20 years later. May we never forget.

Episode 136: When It Hurts to Hear — Hyperacusis Awareness Founder Jemma-Tiffany

The third patient hero who joined us in September, Jemma-Tiffany, has yet another amazing story to share. Hyperacusis is a rare and poorly-understood disorder where everyday sounds cause physical pain; for Jemma, the ringing of a telephone or turning on a washing machine results in excruciating pain accompanied by migraine — and sometimes seizures. She has suffered from this condition from age 6, but (yet again) the extent of her condition was not acknowledged for some time, and growing up she endured several painful treatments, none of which turned out to be effective. Attending school was torture. 

But throughout her journey, Jemma found a focus.  “The more and more different types of things that I went through, as painful as it was, I kind of got this resolve that I was going to do something so that other people did not have to go through that. And that I was going to change things.”

Now, at the ripe old age of 17 (!!) and despite her very limited capacity to function outside of her sound-proofed bedroom, Jemma has become a tireless advocate for her condition, creating the support group Hyperacusis Awareness and working on such advocacy projects as getting telepresence and high-level sensory modifications added to Title VI; collaborating with research scientists and the American Academy of Audiology to establish clinical practice guidelines to protect those with hyperacusis; establishing a national awareness week for the condition; as well as a campaign to extend distance-based learning (implemented during the COVID-19 pandemic) for disabled students in need. 

This month, we were reminded of the lovely quote from another of our heroes, mister Fred Rogers: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’”

Come meet our heroes and helpers.

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