Faces of Long Island celebrates the uniqueness of everyday Long Islanders. In their own words, they tell us about their life experiences, challenges and triumphs. Newsday launched this social media journey into the human experience to shine a light on the diverse people of this wonderful place we call home.

‘A mastectomy is not a free boob job. It is an amputation.’

Amy Safaty, Hauppauge

“I call myself a breast cancer previvor, someone who has a genetic predisposition to cancer. After my mother was diagnosed with breast cancer in 2018, my sisters and I underwent genetic testing. We were all positive for the BRCA2 mutation. The gene normally functions to fight cancer cells in the body, but the mutation increases the lifetime risk of developing breast cancer.

“I was completely shocked. My mother was negative for the mutation, so I assumed I would be, too. I was faced with impossible decisions: Either remove my breasts or undergo an MRI and mammogram every six months. At first, I said there’s no way I’m going to chop off my breasts. But there’s something called ‘scanxiety,’ having to go through those scans every six months. And it was expensive; I got a bill for over $2,000 for one MRI. Then a classmate in pharmacy school was diagnosed with breast cancer, and she gave me the push I needed to stop fooling around.

Over time, I turned my pain into power.

“In 2020, at 29 years old, I had a prophylactic double mastectomy, the first of five surgeries to remove and reconstruct my breasts. A mastectomy is NOT a free boob job. It is an amputation. It is raw, emotional, painful and heartbreaking. At the same time, I went through two rounds of cryopreservation so I could keep my fertility. I didn’t know where my life was going, but I wanted to have a family. Genetic testing is controversial, but there is a test that can detect the mutation, and if I do have the option of removing that mutation from my family tree, why wouldn’t I?

“Over time, I turned my pain into power. I began to make decisions to impact my future and turn my experience into a way to empower and educate others. I’ve partnered with amazing organizations such as The Breasties, The Previvor and BRCAStrong to help advocate for the breast cancer community. In October, everything is pink, pink, pink, but breast cancer is year-round. One of my biggest platforms is advocating for people to do a breast self-exam once a month, every month, on the first of the month. It’s part of a campaign called ‘Feel it on the first.’ If you feel something, say something. Early detection saves lives.”

Interviewed by Barbara Schuler

‘My biggest thing is, I’m not ready to go yet, too much to do. You have to stay positive; you have to fight.’

Hauppauge

“I wasn’t feeling good last summer, and I kept putting it off. So I finally decided to make a physical appointment. The doctor didn’t do much. I called my son at work, and I said, ‘Can you take me to the emergency room?’ Three-thirty in the morning in September, I found out that it doesn’t look good. I said, ‘Well how bad is it?’ It’s metastasized stage 4 pancreatic cancer, and it’s in the portal of the liver also. So they can’t do radiation ever. They can’t do the Whipple, which is a surgery to stop the cancer from spreading.

The more cells we can kill, the longer I’ll be here. I’m going to be here. I’m watching my son get married next year.

“So I’m on chemo for the rest of my life. I was upset when they first told me. In January, I was upset and angry because they gave me a timeframe, and that’s when I took back my life. I said, ‘No, I’m on God’s time. I’m on His time, His plan.’ I’m fighting hard, as hard as I can. The last few weeks, I’ve been very emotional. Has it been tough? Yeah. Has chemo kicked me down? More times than not. But I’m trying every day, and I have the best support group in the world. The LGBT community are some of my biggest supporters. I have rabbis praying. They pray for me in mosques. There are prayer chains for me everywhere. They want me to get better. For the longest time, I didn’t post anything on Facebook. And finally, after I shaved my head, I said, ‘This is what six months of stage 4 pancreatic cancer looks like.’ I wanted to keep my bangs, but as he was buzzing my head, they were coming off in his hand.

“So I’m going to keep it shaved for the summer, and then see if it’ll grow again. It’s a long battle. And to think, five years ago, the minute they said you had stage 4 pancreatic cancer, you went into hospice and died. There was no optimism. My faith’s gotten stronger. I’m like, ‘I know He’s got this, and I’ll get through this.’ I’ll never be cancer free. But the more cells we can kill, the longer I’ll be here. I’m going to be here. I’m watching my son get married next year. My biggest thing is, I’m not ready to go yet, too much to do. You have to stay positive; you have to fight.”

Interviewed by Jay Max

‘I was excited when her son was born. I cried when her husband died. I feel like she’s my best friend.’

Hauppauge

“I live in Hauppauge but grew up in Commack after moving there in 1957 at age 5, when it was nothing but cabbage farms. When I was a fifth-grader, my older sister was given a pen pal project in school. And if you have an older sister, you know you have to do what she does, so she asked her teacher to give me a name to contact, and he did. Her name is Betty, and she’s from the London suburbs. We started writing each other, and 60 years later we’re still doing it!

I feel like she’s my best friend. It’s truly one of the treasures in my life.

“I’ve moved around, but no matter where I lived, we stayed in touch, writing each other 5, 6, 7, 8 times a year. Her son just set her up with an email address this year, but before that, we’ve literally written each other letters. She’s had an influence on me as she provides a viewpoint of this country from an outside perspective. It’s so interesting to see how other people look at this country. I have an unbelievable letter she sent me after the 9/11 attacks, an outpouring of love for the American people.

“We’ve met twice, both times over there: when I was in college in 1971, and again in 2012 when we both turned 60. Her son is trying to arrange a trip for her to come here this year. I recently got an email from him, and he told me she cherishes our friendship. I feel the same way. I was excited when her son was born. I cried when her husband died. I feel like she’s my best friend. It’s truly one of the treasures in my life.

“She wrote me in May to celebrate our 60th anniversary of writing each other, and it had this poem”:

For 60 years we’ve both written, ever since we were both 10;
   letters sent out to the States, and those written back again.
We tell of all life’s ups and downs, our sadness and our pain;
   and we write about the good times, and when the sun came out again.
We write of summer holidays, and all the things we’ve done;
   places that we’ve been to, and how we had such fun.
And now we email letters, it’s spontaneous and new;
   immediate conversation to say what we’ve been through.
We’re friends across the ocean, close yet miles apart;
   and every word we’ve written comes right from the heart.
It’s good to have a pen friend who is forever dear;

Interviewed by Ian J. Stark

‘We saw other children living in the hospital and realized theirs was a world we knew nothing about until we were in it.’

Hauppauge

“In 1989, my wife, Angie, was pregnant with our second child, and, unfortunately, at birth there was a major accident. When my daughter Angela was born, she had lost a lot of blood and was oxygen deprived, suffering severe brain damage, which left her very medically frail. She was transferred to another hospital and was there for six months. Angela was gorgeous, with beautiful brown eyes.

“Midway through her life, she stabilized to a point where we could get her off oxygen support and even take her out in front of the hospital. One of my favorite photos shows her and my son sitting on the lawn.

No longer would parents have to leave Long Island to see their kids.

“At that time, home care services were not great for children requiring long-term medical support, and there were few options in the area for rehab or long-term care. Then I found the Hospital for Special Care in New Britain, Connecticut. We visited, and it ended up being our only reasonable alternative, so we transferred Angela there. We would drive back and forth to visit her from Long Island.

“We saw other children living in the hospital and realized theirs was a world we knew nothing about until we were in it. We started advocating to politicians on a federal and local level, writing letters and calling every assemblyperson and state senator on Long Island, saying this is a bigger issue than people understand.

“Around that time, a researcher at the state Department of Health completed a report showing how many kids were stuck in hospitals throughout New York State. I reached out and got permission to use his data to make the public aware of this population — we used the term, ‘medically fragile children’ — and held two or three conferences, workshops and fairs a year for five years to help educate the community about these children.

“Angela made it to her first birthday before she passed. I was working in Garden City when I got the call from my wife that Angela was rapidly failing. On the way to the hospital, our car broke down and we arrived too late.

“After her passing, I was lost as a parent. It was just devastating, and the lack of services for children like Angela made the situation even worse. We had started this advocacy, but there was a brief moment when I wasn’t sure whether I could go on.

““Our daughter, Angela died in 1990, about a month after her first birthday, having lived all her life in a hospital. We decided that the best way to continue our relationship with her was to find a nonprofit organization to assist families caring for children with special health care needs.

“As part of my advocacy, I spoke to legislators and held workshops for the New York State Department of Health and the state Office for People With Developmental Disabilities.

“A state official told us, ‘If you’re not getting anybody to pick up these services, why don’t you do it?’ We applied for and received a small state grant to cover unreimbursed expenses for parents bringing children home.

“Over the next six years, I continued speaking anywhere I could to raise awareness. At a legislative breakfast, Assemblyman Harvey Weisenberg of Long Beach was in the audience. He said, ‘We’re going to make this work for you.’

“By the time funding was approved in the New York State budget, we had affiliated with Independent Group Home Living, an agency operating adult homes for individuals with developmental disabilities.

“We began planning the first group home in East Moriches. As a parent starting from scratch, my research brought me to multiple Northeastern states to see what other people had done. I didn’t want an institutional setting. I wanted something warm and homelike, like any other home except with 24-hour nursing, with oxygen hookups disguised in rooms decorated like a home environment. No longer would parents have to leave Long Island to see their kids.

“It took 10 years from Angela’s birth to open that first home in East Moriches. Five years later, we opened a second home in Smithtown. The most recent one is in Stony Brook, close to Stony Brook Medicine, to accommodate children with severe medical issues who need ventilator support and home visits from pediatricians and pulmonologists.

“In its 30th year, Angela’s House assists hundreds of kids, children with developmental disabilities and health problems, children injured in accidents, children with rare diseases. Angela’s House allows them to live beyond the expectations of their diseases and have the most fulfilling life they can lead.”

Interviewed by Jim Merritt

‘I work with kids with special needs, and I’ll be honest, before working with them I was losing my love for the game.’

Hauppauge

“I’ve played baseball all my life, and many people helped me along the way, but my high school coach was probably the biggest help. Coach Bob Ambrosini showed me more than the ins and outs, but also how to get the most out of myself. He and other coaches would say you need to ‘give back to the game.’ When you’re a kid, you’re like, ‘What does that mean?’

“I got drafted by the Philadelphia Phillies, and I always enjoyed meeting fans. I’d sign every autograph, stayed after to talk, give kids broken bats. Sometimes the organization would send you places to do these things and one time when I was in Double-A, I got sent to this place in Pennsylvania, not knowing there was a kid there with special needs. I realized the kid, about 7-8 years old, often came to my games. He saw me and said, ‘It’s my birthday, could you come to my house?’ I thought, I’m off today, so I told him sure, and I went to his house to celebrate with his family. They cooked me dinner, we played wiffleball in the backyard, and I was there for a few hours at least. At the time, I didn’t think I was taking it to heart, but I know now I did. It was really gratifying.

With these kids, it’s just for the joy of the game. They really saved me, and I love it.

“Since leaving the professional game, I coach and also work with an organization that helps people with disabilities play baseball. I work with kids with special needs, and I’ll be honest, before working with them, I was losing my love for the game because in the standard baseball world, there’s an unrealistic thought process. Some players assume they’re heading for the major leagues and expect to be treated like stars.

“These kids, I love them and their families. After we play, the parents and kids are thanking and hugging me, but no one is saying ‘Am I batting first?’ or ‘You batted my son ninth, he’s better than that.’ With these kids, it’s just for the joy of the game. They really saved me, and I love it. I teach them the same way I would any kids, and we make jokes, we laugh, we dance. It’s amazing.

“One of my players recently won an award, and in his speech said ‘Thank you to coach for believing in me, and not just believing in me but always being there with your heart.’ I just started crying like crazy.

“I get it now. This is my way of giving back to the game.”

‘I had a fantastic support system in my family when I came out, but any young gay person will feel othered at some point.’

Hauppauge

“I was a child actor in local theater, and what I loved most about it was being in rooms of like-minded weirdoes who felt like they didn’t fit in. Everyone was able to come together and enjoy telling stories. I certainly felt “othered” as a gay kid on Long Island. I had a fantastic support system in my family when I came out, but any young gay person will feel “othered” at some point.

“I grew up in a Roman Catholic household. I had to recontextualize my relationship with the church because I grew up closeted and afraid of what that might mean for my faith; I’ve come to a place where I have a relationship with my spirituality that I am proud of. My parents are artistic, so they understood that I had a sense of passion and that I always knew what I wanted to do.

“I got the start of my career as a composer, lyricist and playwright with “Balloon Boy the Musical,” for which I wrote the first draft when I was in seventh grade. I would write shows in spiral bound notebooks in math class. The show was loosely based on the 2009 scandal where a Colorado father said his son was stuck in a homemade weather balloon. That show premiered at the NY Musical Theatre Festival when I was in the incredible theater program at Hauppauge High School.

The beauty of theater is that it’s the act of empathy at its core. Those are the type of stories I like to tell.

“I’ve also been lucky enough to write the score for Off-Broadway’s “A Musical About Star Wars.” I recently put out a concept album called “Little Black Book,” which is a rock musical loosely based on the life of the former Hollywood madam Heidi Fleiss. I’m fascinated with telling stories that three-dimensionalize humans whom the tabloids have two-dimensionalized; I treat them with empathy in a surprising way.

“The beauty of theater is that it’s the act of empathy at its core. Those are the type of stories I like to tell. I grew up watching videos of musical theater writers performing songs at 54 Below, like Pasek and Paul, Joe Iconis, Adam Gwon- people who are my age now, and were premiering weird songs that were unlike anything I’d ever heard on a stage. I thought, ‘That’s what I want to do!’ There’s something really special in that I am playing in the same venues as them. I miss the innate intimacy of theater and can’t wait until I can get back to it.”

Interviewed by Iris Wiener

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