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.

‘I went from being an average teenager to being stuck in bed close to 22 hours each day.’

Massapequa

“Ehlers-Danlos Syndrome (EDS) is a genetic condition which affects the collagen in your body. My joints are loose, and things pop out easily because of it. EDS is also the underlying cause of my other conditions.

“I have Postural Orthostatic Tachycardia Syndrome (POTS), which means that I have low blood pressure, my heart races, I have improper blood circulation, and it causes neurological symptoms. I was first diagnosed with EDS in the eighth grade when I had minor symptoms. I started a campaign in the ninth grade to raise awareness, and continued to do it for three years with the help of my friends. I’m really proud that I raised $4,500 for the EDS Foundation.

“Things got worse quickly in the 10th-grade. I found out that I had Tethered Cord Syndrome, which meant that my spinal cord didn’t allow proper movement. I went from being an average teenager to being stuck in bed close to 22 hours each day. That summer I had my first surgery to have my spinal cord de-tethered. I was mostly in bed in 11th-and 12th-grade because I had another surgery to relieve high brain pressure. I had no muscle control so I couldn’t support my weight. I wasn’t even able to hold my head up anymore. I had to use my few good hours in the day to get schoolwork done.

I want to do biomedical engineering and then go to law school to do disability rights law so that I can help people with rare and unusual conditions; after all, I spent so much time in high school advocating for myself.

“In November of my senior year I had a fusion, which was a really big surgery that helped significantly. The day I was finally able to go back to school, it closed because of Covid! I wasn’t willing to let being sick stop me from taking AP classes.

“I poured my little energy into college applications. I learned that I am a very driven and positive person. I focus on the small silver linings, such as my great dog, Fritz. If I needed help, he would alert my parents. Recently, I was excited to play piano again, and now I can learn how to drive. I’m going to the University of Virginia in the fall after deferring for one year. I want to do biomedical engineering and then go to law school to do disability rights law so that I can help people with rare and unusual conditions; after all, I spent so much time in high school advocating for myself, like having them install a handicapped door button. At this point though, I’m just looking forward to being pretty normal.”

Interviewed by Iris Wiener

‘I wanted to challenge myself to do something influential.’

Lou Bernardi, New Hyde Park

“I’m a college baseball coach and my season was canceled due to COVID-19. People can sulk or use this opportunity to help others. I decided I can’t just sit home and do nothing.

“I didn’t get sick, and I didn’t lose my job. I was lucky, so I wanted to challenge myself to do something influential and effect change in a positive way. There were a lot of people who helped with the collection, donation and distribution of food. Overall, we probably fed over 5,000 people. A lot of restaurants helped out and donated meals along the way.

“I led a huge toy drive for Toys for Tots, donated over 500 toys to the Marine Corps in Garden City. We donated 150 lunches to the Randall’s Island counter-terrorism unit for Christmas, handed out gloves, masks, hand sanitizers, whatever I could get my hands on. We donated some food to some hospitals; we went to some food banks with various organizations.

In light of the pandemic, ordinary citizens are giving above and beyond what they’re expended to do and just care for others.

“Our mission was first responder-based. They were out there on the front lines and getting sick. It was great for morale to go to these various precincts. When the whole ‘defund the police’ and anti-police movement happened and we took that as an opportunity to double down and say, ‘A month ago we were praising these people and now we’re bashing them and telling them they shouldn’t exist.’

“So, it was another way to use our platform and influence something good and give back and help others. In light of the pandemic, ordinary citizens are giving above and beyond what they’re expended to do and just care for others.

“I’m a New Hyde Park resident and we just donated a batting cage to the New Hyde Park Police Athletic League to let the kids develop their skills.

“My motto throughout this whole journey is giving back and helping others. Stand for what you believe in; if you have any outlet whatsoever, whether is social media or email, use your network to promote some good because there’s a lot of bad stuff that we see.”

Interviewed by Rachel O’Brien – Morano

‘The last time I got arrested, I said I can’t do this anymore.’

Pamela Neely, Huntington Station

“At 26 years old I was in college, I was working full time, had mutual funds and I was saving to buy my own home. My mother died. She taught me everything about life, but nobody teaches us about death. After I lost my mom, and I had a breakdown and I started using drugs.

“I got involved with a lot of the wrong people, I was naïve and gullible, and I thought people were loving and caring because that’s what I came from but it’s an evil world. I kept getting arrested and continuing to go in and out like a revolving door. Part of why I kept returning was there was never anything available to me when I got released. I couldn’t continue to live that way.

“The last time I got arrested I said, ‘I can’t do this anymore.’ I went cold turkey; I didn’t go to a hospital for detox. I got clean on my own. That was in 2000 and I haven’t looked back. I’m not that person anymore.

“I had a little Yorkie that was my baby named Lightning. I called her Light Light. She got very sick and I had to put her down. After that, I had to figure out what I was going to do with the rest of my life because she consumed my life. She was like my physical therapist, I had operations and she was always with me.

None of us are bad people. We just make some bad choices.

“I’d be feeling sorry for myself, but I had to get out of my bed and walk the dog and take care of her. She gave me a reason to get up. Then I got involved with New Hour for Women and Children. I was part of the first cohort of the emerge program a few years ago. It’s been amazing. I became a peer leader in an advocacy program, a 10-week program to become an advocator. They give you support.

“I got the chance to see women coming home from incarceration and they’d get involved in the program and say, ‘I don’t have a job, I’m living in a shelter.’ Then the next week, they’d say, ‘I found a job, it’s gotten better.’ It’s like watching a flower grow, blooming and blossoming.

“I became very empowered, that helped me a lot. Now I’m the social justice coordinator for New Hour. I’m a team leader advocating for two parole bills for elderly people in prison and so people who are eligible for parole get out unless they’re a risk. None of us are bad people. We just make some bad choices.”

Interviewed by Rachel O’Brien – Morano

‘I realized I could be an effective teacher for all students.’

Wayne White, Amityville

“I decided to get my master’s in education because I had reverse motivation. When I was growing up, I had a teacher who wasn’t good, and I always thought I could be a much better teacher. I’ve been teaching at Bellport High School for 22 years and I currently teach AP U.S. history.

“When I first started teaching, being a Black male, it felt like I had been hired to help Black students pass. I received an award from Farmingdale College after I was nominated by a former student, who I impacted. It was a white student, and it blew my mind because it was a quiet student and I never expected it from him. That’s when I realized I could be an effective teacher for all students.

“It changed my whole outlook on teaching. It opened my eyes to see I had an effect not just on students of color. I’m also in my fifth term as president of Bellport Teachers Association.

“When I started teaching AP, I was the only Black teacher in social studies for a while; there are a few more now. I’ve seen the number of students of color in AP go up, and I’ve heard from Black and white students that they took the AP class so they could have their first Black teacher.

“One of my most memorable students is a student who in ninth grade wasn’t doing well; he was not focused, so I sat down and spoke to him.

“He went from being left back in eighth grade to graduating in the National Honor Society and is now a world-renown photographer. He’s one of those people you needed time to get to know, and he’s one of my most memorable students. He always had the potential. It just needed to be unlocked.

I’m involved with a team to create a roadmap for how districts can address the diverse needs of our children and families by looking at the complex system of structural inequalities and biases. I have some too, and I have to fight through them, but as long as I’m aware of it, I can fight it.

“I’m also director-at-large for New York State United Teachers, and I’m involved with a team to create a roadmap for how districts can address the diverse needs of our children and families by looking at the complex system of structural inequalities and biases.

“I have some too, and I have to fight through them, but as long as I’m aware of it, I can fight it. It’s important to know what other people are going through. I’m not the person you would expect me to be when you look at me. You have to get to know me a little bit better.

“I’m starting to see now that recently people’s ears are opening up, which is a good thing.”

The person profiled here has been a guest on Newsday Live.

Interviewed by Rachel O’Brien – Morano

‘At first, you feel like you don’t know what you’re doing but slowly, as you start memorizing more and more, a sense of accomplishment really drives you.’

Mariyah Rajshahiwala, New Hyde Park

“I finished my sophomore year, and nothing had panned out in terms of internships. Other people were completing internships and I felt like I was wasting my time. I had been on and off memorizing the Quran the past eight years, but didn’t get far, so to deal with the anxiety of feeling left behind I started to refresh what I knew already. I felt at peace every time I was doing it, so I decided to take the year off and see how far I got memorizing. I knew that if this was something I wanted to do, I wouldn’t be able to do it in my current environment. I was not in the right headspace here. I was struggling with college and didn’t know if what I was doing was what I wanted to do.

“I needed to leave New York. There are a few centers around the world where you can memorize the Quran. I had known a couple of people who had gone to Nairobi, so I decided let me just go and see how it is. Going to Nairobi was a completely fresh start. It was Quran all the time. I had never gone through such a rigorous program. At first, you feel like you don’t know what you’re doing but slowly, as you start memorizing more and more, a sense of accomplishment really drives you. If I could do five parts, there’s nothing stopping me from doing 10, or 20, and then pretty soon you’re done.

Now I’m doing stuff I’m passionate about and I’m happy. Quran really helped. I know it’s a holy book but for me it’s so much more; it’s part of me.

“Memorizing the Quran is physical, but it’s also such a spiritual journey. You have no motivation other than wanting to do it for yourself on a spiritual level. It took me 15 months to memorize the 30 parts. Once I was done, I didn’t believe it. It was bittersweet. All I had thought about for 15 months was the Quran—to all of a sudden not have it be an integral part of my life was hard to deal with. I was initially pre-med and it took memorizing the Quran and realizing how much fun I had with this insane task to see I was not happy pursuing pre-med. It gave me courage to say pre-med’s not what I want to do; I want to pursue publishing and magazine editing.

“Before, I was super busy because of science labs and all that but I was always lacking. Now I’m doing stuff I’m passionate about and I’m happy. Quran really helped. I know it’s a holy book but for me it’s so much more; it’s part of me.”

‘To write a book was my lifelong dream, and it’s even better to have it be about the subject that I love the most.’

Debra O’Fee, Massapequa Park

“At the age of 3, Ryan was diagnosed with Pervasive Development Disorder. At the time, I didn’t realize that PDD was autism. When my son was 4, I wasn’t sure what his abilities should be. I decided to keep a journal of what was going on with Ryan. Later, when I would read back, I’d be crying or laughing, or I’d be frightened because I couldn’t believe we had lived through the experience.

“We eventually learned that Ryan would elope, which happens in 48 percent of children with autism. He’ll wander or disappear. There was one episode when he was 5 and he was missing for 20 minutes. It was terrifying because he is nonverbal and unaware of things like cars, streets and bodies of water. Luckily, it was resolved. Later that day, I went to find books on children who wander and I couldn’t find any. There were plenty of books about autism parenting, but none focusing on our immediate concern. I took my journals and turned them into my book, ‘I’m Sorry Jimmy Muscle: Why My Son with Autism Wanders.’

I feel like the book is a love letter to my children. This, along with my children, will be my legacy, no matter how many people read it.

“Readers are telling me they laughed so hard they cried and that they learned so much from it. To write a book was my lifelong dream, and it’s even better to have it be about the subject that I love the most: helping special needs children and their parents. Plus, I got to write it about my two sons.

“What I find even more fascinating than Ryan and his autism is watching my older, neurotypical son, JT. He doesn’t have pre-conceived notions or judgments. When something was going on with Ryan and we wouldn’t know how to deal with it, sometimes we would look to JT to see what his natural response was.

“‘I’m Sorry Jimmy Muscle’ is named after a boy that I grew up with. I believe he has autism, but we didn’t know about autism when I was growing up in 1982. Jimmy Muscle got that nickname because he would come up to us and say, ‘Can I feel your muscle?’ Many kids would be mean and run away screaming. I hadn’t thought of him for more than 20 years. Then I had Ryan and all of those memories came back. Now, Ryan is 11 and JT is almost 13. I feel like the book is a love letter to my children. This, along with my children, will be my legacy, no matter how many people read it.”

‘I have always been afraid of taking a leap into something that I don’t know. My wife taught me that without change and growth, you’ll spin your wheels in life.’

Ian MacManus, Huntington

“I remember the moment I first laid eyes on her. I was in my final clinical rotation for occupational therapy school at Cerebral Palsy of Nassau County. She was walking across the parking lot as I was pulling in, and I immediately thought she was stunningly beautiful. Her blonde hair and big smile caught my eye. To my luck, I went to pick up my first student of the day to treat, and she was in the classroom as an aide for the summer.

“I found out she was an OT student in Boston while I was finishing up at Stony Brook, and, on my last day of work there, I finally mustered up enough courage to ask her out. It has been a magical ride ever since.

“She was going back to Boston, so I only had a week to date her before she was three hours away. We talked on the phone for hours every night and found that we shared so many of the same ideals. This April, we will be married for 15 years.

“Three years ago, we started our own business, MacManus Occupational Therapy. Aside from our family, that was when we really had the pleasure of growing something together. I have always been afraid of taking a leap into something that I don’t know. The business side is new to me. My wife taught me that without change and growth, you’ll spin your wheels in life. Now, we’re providing occupational therapy for neurologically impaired patients, as well as people that have upper extremity injuries.

A lot of people ask, ‘How can you work with your wife?’ I had no idea how exciting growing a business and living out our dreams would be.

“When it comes to working with people who are neurologically impaired, it is so dynamic and diverse in its practice; you’re always learning, and there are opportunities for growth with patients. It’s helping recover life skills and building on lost opportunities. It hits home deeply.

“A lot of people ask, ‘How can you work with your wife?’ Doing it together has been more fun than anything else. I had no idea how exciting growing a business and living out our dreams would be. Working with her has been an adventure and an amazing feat. I look over and see my best friend treating a patient two tables down and I’m excited.

“We continue to grow as a couple, as a business, and as a family. We now have four little ones at home. I knew from the day I met her she was the girl I was going to marry.”

‘I have learned not to waste time because the road in front of me is shorter than the road in back of me.’

Woodbury

“The Year of Living Dangerously is a movie that is on my top 50 list. However, I would call 2020 the year of hitting a brick wall. I have lived in a nursing and rehabilitation facility for six years because I had a blood infection and lost the use of my right arm below the elbow. We have been locked down for one year which means I couldn’t leave my floor or go outside.

“Many people I socialized with died. A few weeks ago, I tested positive for COVID. I have had no symptoms, but because it happened after all this time, I feel like the universe is somehow punishing me. I wasn’t afraid I would get it at this point, so I was shocked. Being away from my family and friends has affected my mental health in strange ways. I revisited things from the past that I hadn’t thought about for a long time. This quarantine-within-a-quarantine has given me a heightened sense of failure in running my life.

“Through being in this type of facility I have learned not to waste time because the road in front of me is shorter than the road in back of me. Before there was always time; soon you blink your eyes and years are gone. I have an aptitude for language and I always imagined that I could have learned Arabic or Farsi and worked for the government. I’m hoping it’s not too late to learn a second language and help somebody in that way. I still feel like I have something to contribute.

I have experienced very dedicated nurses and physical therapists that will discuss their lives with me. It helps me remember that the world is still turning, even though the search for a freer life came to a halt this year.

“One day I would like to join a book club or volunteer to teach people how to read. I am mentally and physically capable of doing well in a subsidized apartment with minimal help from an aide. I’d love to do the mundane things that people feel are drudgery, like making my bed and doing laundry. I try to remain optimistic. I do puzzles, crafts and decorating for holidays. When everyone else here tended to gain weight this year, I lost it! It feels good.

“I have experienced very dedicated nurses and physical therapists that will discuss their lives with me. It helps me remember that the world is still turning, even though the search for a freer life came to a halt this year. For now, there is still this persistent and constant feeling of unreality, sort of an existence one would see on ‘The Twilight Zone.’”

‘It’s important to acknowledge that animals have a profound impact on the well-being of people. It should be recognized more often.’

Levittown

“I was working at a vaccine clinic upstate when a woman brought Tucker in and mentioned that he was going to wind up in the shelter that night. She said that she found him 2 miles off of her backyard tied to a tree barking. I immediately knew that he was mine because he literally fell in my lap and gave me his belly. He became my best friend. He has always been so sweet and kind in nature. We started going to dog parks and I found other things to do with him on Long Island, so we grew close. He has always been attached to my hip. He’s a big cuddler!

“Now, Tucker is an emotional support animal. I had diagnosed anxiety, and I didn’t like the medication I was being prescribed. I felt like it would dull my happy even though it tamed my anxiety. My therapist and I felt that Tucker and his presence calmed my anxiety as a whole. My doctor doesn’t really believe in emotional support animals, but my therapist does, and she could see the difference in my body language when I would bring him with me to meetings. She would have me bring him and then sometimes I was told not to bring him. I would glow when I would talk about him. She thought it would be beneficial for me to have him with me at work for when things get stressful. I work at a school, and when I bring him to work he brightens everyone’s day.

He greets everyone as individuals—each person gets a different greeting. Tucker is so receptive of when people are not in a good mood or they’re sad.

“It puts a smile on my face when I’m walking into the school and everybody says Tucker’s name as he rolls over on his belly. He greets everyone as individuals—each person gets a different greeting. Tucker is so receptive of when people are not in a good mood or they’re sad. When students come into the main office seeking medical help or they’re upset and want someone to speak to, Tucker greets them at the door and you just see a sigh of relief come over them.

“To see the true impact that he’s having on a child is so overwhelming to witness. It’s just so warming and beautiful to see how much he affects people on a daily basis, myself included. It’s important to acknowledge that animals have a profound impact on the well-being of people. It should be recognized more often. People are generally happier. I certainly am.”

‘When we left the hospital, they said the longest we’ve seen a kid live with this is five months.’

Commack

“Our daughter was born on Nov. 8, 2019 — the best day of our lives. Everything was storybook perfect for the first five weeks. December 15, that’s when every parent’s worst nightmare came into fruition. She would look downwards, and her eyes would just be stuck. We called a friend who is a radiologist and found this massive brain tumor. She was in surgery within 12 hours. After three hours, the surgeons came out. They said she was bleeding so much and couldn’t get the whole tumor out. We posted this on Facebook and all of our doctor friends were making calls on our behalf, asking around, and sending us information.

I’m not a particularly religious person, but I felt like that was like a divine intervention of some higher being watching over us.

“When we left the hospital, they said the longest we’ve seen a kid live with this is five months. But once we went home, she was just getting really sick. We took her back to the hospital and they said, we think maybe a couple of weeks. And then as we’re pulling onto our driveway, there’s a number calling and it’s the chief of neuro-oncology from St. Jude. His exact words were, ‘I’ve cured 12 kids of this before. I don’t know if I can cure her, but she’s too young. We have to try at least, don’t we?’ I opened the door to our house and my head just went down in prayer. I’m not a particularly religious person, but I felt like that was like a divine intervention of some higher being watching over us. We flew down five days later.

“We were in the hospital for almost a month just to get her stabilized. We started her on chemo. The words that you want to hear as a cancer family is something called gross total resection. That means they’ve gotten the entire tumor out. And in the case of our daughter, it was all or nothing. Even if a small sliver of tumor was left in her, she had a 0% survival rate. So, when the Dr. came out from surgery and said we got GTR, I collapsed in his arms and kissed his hands. That’s when we saw the light at the end of the tunnel.

“Our daughter is now almost 15 months old and just a happy, normal kid. It’s like she has no idea what happened last year. She’s crawling all over the place like a little rocket ship. It’s incredible. She really has been such a source of inspiration. Not just for us, but so many people.”