‘I cannot imagine watching the world go on around me and not being able to interact with it to the best of my abilities.’

Nadya Resnick, Merrick

“My dad, Wayne, passed away two months ago. In April 2022, he was diagnosed with ALS [amyotrophic lateral sclerosis], also known as Lou Gehrig’s disease. The news came as a shock to us all. It first began with a fall while my dad was on duty as a Nassau County police officer. He thought it was a moment of clumsiness until it happened again, and he went to the neurosurgeon and got the diagnosis. ALS is a terrible neurological disease in which your muscles start to weaken, and the things that we take for granted every day, as big as walking to as little as scratching an itch, get stripped away. I only heard of ALS once when I was in middle school, when the Ice Bucket Challenge was trending.

Tomorrow isn’t promised for anyone. Communication is key.

“Since then, I’ve heard nothing about it. It is quite a shame that a disease so debilitating barely has any audience. It seems like only those who’ve been through it know about it. I guess you can say they’re the lucky ones. Ignorance is bliss. My mom and dad adopted me and my four siblings from Kazakhstan. Growing up in a big family was super fun, but it also led to communication problems when I was a teenager. There was a long time when I didn’t speak to my parents. I tend to think a lot about those times now. Communication became the most important thing when it came to coping with my dad’s illness.

“Over the past year, my dad’s ability to speak went down to a hoarse, faint whisper. We communicated with him through an alphabet board. This made it super frustrating for my dad. His mind was all there, and he heard and saw everything, but couldn’t get the words out. I saw the sadness in his eyes when people pivoted the conversation when the topic wasn’t even finished yet. It was absolutely heartbreaking. I cannot imagine watching the world go on around me and not being able to interact with it to the best of my abilities. This situation made me grateful for what I have. Tomorrow isn’t promised for anyone. Communication is key. Do not let your grudges get in the way of building back relationships. Wake up overjoyed that you can walk, talk and eat, and watch your mindset flip. And most importantly, hug your dads.”

Interviewed by Hannah Fusaro

‘Long Island is home to the best bacon, egg and cheese sandwiches, so that became my niche.’

Merrick

“I walked away from my union job, and I haven’t looked back since. Everybody knows me as ‘Big Red.’ I weigh about 400 pounds, and back in college, I had long, red hair, so that’s how the name came about. I even have it tattooed on my body. The name has stuck since, and I created some skits on YouTube. I called it ‘The Big Red Show,’ and the skits were just about my life and the outrageous tasks I do daily.

“My younger brother and I started a podcast called ‘Red Hair Don’t Care.’ One day, we were jokingly arguing about something related to food. He’s the skinny version of me. He’s about 100 pounds soaking wet, and he was trying to tell me he knew food better than I did. I turned to look at him and I said, ‘Trust me, I’m fat.’ A light bulb went off, and that became the name of my food reviews and overall brand.

I’m doing exactly what I want to be doing right now. This is the best life I could be living.

“Long Island is home to the best bacon, egg and cheese sandwiches, so that became my niche. I try to fly under the radar — which is pretty hard, looking at me — but I visit local delis and review their bacon, egg and cheese sandwiches. I just set up my camera in my pickup truck and record my review.

“Aside from ‘Trust Me, I’m Fat,’ I’m also an entrepreneur. I co-own Dolce Bella, a luxury Italian ice brand. While working in security, I met one of my friends and now business partner, Brandyn. He started this business as an Italian ice cart and wanted me as a partner to help expand it. With the help of social media and the Long Island community, our business has grown tremendously, and we’ve even done private parties and weddings. We’re looking to expand into a storefront.

“We’ve spent the last six months together for 14- to 18-hour days, but it’s been great working with a friend. We can be really honest and bounce ideas off each other. Owning a business has its highs and lows. It’s a huge financial burden, and it takes a lot more to get started than most think. I’ve had maybe three days off this entire year, but watching our business grow makes it worth it.

“Being an entrepreneur was always in the back of my mind. I knew I wanted to be my own boss. I’m doing exactly what I want to be doing right now. This is the best life I could be living.”

‘We have a whole community of cup stackers. There are some people who do this on Long Island, but it’s mainly all over the world.’

Merrick

“Cup stacking is where you stack specially designed cups in certain sequences as fast as you can. I was inspired to start cup stacking by just seeing videos on social media. It just seemed very different from other hobbies. It seemed unique.

“I started just getting random plastic cups out of the closet, and just started stacking them randomly without even knowing what I was doing at the time.

“A couple years later, when I started realizing I was going pretty fast, it just kind of clicked where I could do this competitively — and right now, I am in the top 500 in the world.

“I would say this is absolutely an art form. We have a whole community of cup stackers. There are some people who do this on Long Island, but it’s mainly all over the world.

“I am also on Team USA for cup stacking. When I became a member, it felt like a huge, exciting thing for me. I felt really honored because just a select handful are a part of this team. It felt really good.

“I think going to California for a stacking tournament was really the biggest moment of my life currently. Oceanside, California, is where cup stacking was invented, back in the ’80s. And basically, I went to the place where it all began.

“My ultimate goal for cup stacking is to go to the world championships in Korea this year. I have been fundraising and hope to make enough money by October.

“Cup stacking isn’t always fun, and no one can be perfect at it. You will have mess-ups, and sometimes it is not just a good day for stacking, and you don’t want to overdo it.

“You don’t want to get frustrated doing one sequence repeatedly and then getting really mad about it. I mean, sometimes when you get a record speed, it’s absolutely that feeling of relief. But sometimes it’s just not one of those days. And that’s OK.”

‘It really is a great feeling to be able to help other parents.’

Merrick

“In sixth grade, for my yearbook, they asked, ‘What do you want to be when you’re older?’ and I said I wanted to be a chef. I loved watching my grandmother and grandfather cook. I wanted to go to culinary school, but I ended up going to a four-year college. I was looking for a creative outlet, but when I became a stay-at-home mom, everything stopped, and it was a big life change. It was just diapers and feeding, and you get wrapped up in it; you kind of lose yourself.

“I started my recipe blog in 2017. I share nutritious family-friendly recipes, mom hacks, tips to get your kids to eat veggies and fruits, and ways to incorporate your kids in the meal-prep process. When I started the blog, my daughter was 18 months old, and I was newly pregnant with my son. She loved being involved. Her name is Liv, and that’s where I got the name of the blog, LivLaughCook. It started just as an Instagram page, and one year, for Mother’s Day, my husband created a website for me. I get messages and questions from other parents, and it motivates me to keep creating. It really is a great feeling to be able to help other parents.

“I want to see kids eating nutritious meals, especially because I had a really unhealthy relationship with food. I spiraled with yo-yo dieting, and I got caught up in the diet-culture world as a teenager. Just drinking coffee for breakfast was a type of diet for my generation. I had no idea what the proper way to eat was, and it only got worse throughout college. When I met my husband, he said my eating habits weren’t healthy. I didn’t want my children to follow what I did. I wanted to break the mold. It’s really important that they learn healthy eating habits from the start so they don’t fall into that diet culture. I don’t even want those words mentioned in my house. I don’t want my kids to ever think about being skinny or wanting to diet. I want them to eat healthy foods because it makes them strong. I tell them certain foods will make them fast in gym class or will help their brain function so they can figure out math problems.”

I don’t want my kids to ever think about being skinny or wanting to diet. I want them to eat healthy foods because it makes them strong.

“Kids can be picky, so I had to get creative. We shredded carrots and put them in cookies, and since Liv was involved in the process and helped make them, she ate them. My son wanted to get involved immediately. We started slow. When they’re younger, it’s basically just mixing, pouring and measuring out ingredients. When they got a bit older, I started teaching them more skills, like cracking eggs and using kid-friendly knives for chopping. A big part of it for them is this sense of accomplishment of being able to do it on their own. It’s also a bonding experience for all of us when we’re spending time together in the kitchen.

“My daughter’s only 6, but I see that she actually enjoys spinach in her smoothies. I find that if you start early on, their taste buds follow. My son is very into sweets, so we make muffins, pancakes and cookies. We always incorporate healthy ingredients like spinach or apples. For some recipes, they double both as a great snack and a fun activity. When we go to the supermarket, I show them ingredients, so they understand which foods have chemicals, and explain why we don’t buy them.

“They are kids, though, and I believe in balance. My husband eats Oreos and Doritos, and when we go to the pool, they all have ice cream or Popsicles with food dye. We don’t want to be too restrictive because at one point, they might rebel when they’re older. When they’re out, they’re allowed to have whatever they want with their friends, but in our house, we eat clean and we look at ingredients. We want them to enjoy food.”

Interviewed by Melanie Gulbas

‘My sister, she is very resilient; me, I just had an extra kidney. For me, it’s a helpless situation, but clearly it’s worse for her.’

Merrick

“This is really my sister’s story, but I’m telling it; it’s like a donor’s narrative. She has a super rare autoimmune disease called IgA nephropathy. We grew up in Jericho. She first got sick when she was 5, and then at 15 was in the hospital for over a month. She had a normal college life, but in 2008 her problems flared up again, and she really started to go downhill. Her kidney function went down, and [she] was told she’d need a transplant. My mom got tested to be a donor first, because who wants their kid to donate a kidney if they don’t have to? But, as she’s an old-school type and never went to doctors, when they gave her a mammogram, it turned out she had breast cancer. They caught it early, and she’s been in remission since, but it was a blessing and a curse: She otherwise would have never gotten a mammogram, but when you have cancer, you can’t donate.

“I was next in line, and I was a match. I donated. I was in my 20s, and it really wasn’t hard on me. I have just a teeny scar, and I was walking around the neighborhood the next day after the surgery. My one kidney compensates well for both. She went on to have two kids and become a special needs teacher. She lives in Wantagh, I live in Merrick. Last Easter [2021], however, she developed a crazy fever that wouldn’t go down, and [she] was hospitalized. The doctors said she had a sepsis, which for someone with a kidney infection is a really big deal. Her kidney function went down, way down, fast. This is a person who eats right, walks every day. But about six months later, she was put on the transplant list. Now we have no one to donate to her in our family; my husband had thyroid cancer. We created a website and made a social media page to find a donor, and while a lot of people responded, they weren’t blood matches.

“Her kidney function is now at 15 percent and is close to needing dialysis. Getting a transplant when you’re on dialysis is not as healthy, so you want to get one before. And for a mother of two kids to be on dialysis three days a week, just imagine that; so we are really trying to get someone to donate before we get to that point. We don’t know when things could drop, so we have to get something going.”

She has to be the person who’s like, ‘Ugh, I’m the person who needs this to live … Thank you.’ It’s a terrible feeling.

“We’re trying to get people who aren’t blood matches to take part in a ‘kidney swap’ or a ‘kidney chain,’ where people donate to somebody else and then bring someone else in, and my sister would get prioritized for the next kidney that’s a match. That’s lifesaving for more than just my sister. She’s on a lot of medications, which can really mess up your body while trying to sustain her functions. Her legs get swollen, so it’s hard to walk, but she keeps pushing herself.

“She’s a very proud person, living with illness for most of her life. She’s very strong. She hates that I’m basically begging online for a kidney, but I have no shame. I’m like, ‘Let’s just do this, who cares?’ I don’t ever want her to feel guilty about getting a kidney from me. I don’t care at all, but sometimes I feel like she feels that way. But I don’t feel bad at all. I really don’t. There is an unfair power dynamic, and it sucks if the person on the lower end, the recipient, is a person who’s really strong. She has to be the person who’s like, ‘Ugh, I’m the person who needs this to live … Thank you.’ It’s a terrible feeling. I feel so much for her because of that. That she has to feel that way. It’s an indignity. You have to swallow everything, swallow your pride just to be able to live a normal life. No one should have to do that.

“My sister, she is very resilient; me, I just had an extra kidney. For me, it’s a helpless situation, but clearly it’s worse for her. People say, ‘You’re amazing. You donated a kidney.’ But she’s my sister. I had to do it; there wasn’t a choice. All I can do now is get the word out. The state list is like 10 years long, so we need to figure this out. People need to sign their licenses. People need to register to donate. Some think it won’t happen to them, but as more people are getting diabetes, they’re going to need kidneys. As a family member of someone who needs a transplant, you get like, ‘Why aren’t more people doing this?’ My sister’s kids are 10 and 7, and they need their mom.”

To be screened to donate a kidney to Helena, please call Northwell Manhasset at 516-562-0550 or go to helphelena.com to find out more.

Interviewed by Ian J. Stark

‘A love of film is really where it all started, and the career kind of chased me rather than the other way around.’

Merrick

“A love of film is really where it all started, and the career kind of chased me rather than the other way around. I always enjoyed films when I was young and was the kind of person who would stay up to watch the late show and the late, late show and the late, late, late show on my little black-and-white TV in my room.

“I ended up co-creating the Long Island International Film Expo and created and ran the Nassau County film office for 33 years until I left December of 2020 to concentrate on my writing and directing career.

You create worlds. You’re basically creating a world. It’s amazing.

“If I could only do one thing for the rest of my life, it would be writing. The reason I direct is I want to see the story told the way I see it. There are a lot of great directors, and there are things that I write that I would have no problem selling. But then there are certain pieces that are just very personal to me.

“The reason I love the casting end of it is because I love actors. I mean, there are ones that are so talented. Somebody asked me at the ImageOut Film Festival, ‘What was your favorite thing throughout the filming process?,’ and I said sitting there and watching the actors bring the words to life exactly like I thought they should be … and even better at times. It’s like magic, you know? Imagine you have this little idea in your head and then you manifest it into something concrete.

“I mean, if it’s a project that I’ve done, you’re creating something that didn’t exist before. And, if you do it well, people can watch it and get drawn into it and maybe learn things or have feelings or see things differently than they did before.

“With my series ‘Couple of Guys,’ an LGBTQ+ love story, I just fell in love with the characters, and I wanted to see what their life would be like. Could they have a happy ending to everything that they’ve gone through? What happened to the people they left behind? It’s sort of like eavesdropping in a diner, only you’re there pulling the strings, ha ha. Except the actors I usually work with are so great that you’re not pulling any strings.

“They know those characters better than you do at that point. So, it’s just incredible to watch them. You create worlds. You’re basically creating a world. It’s amazing.”

Interviewed by Jay Max

‘If I could give a message to children who have disabilities who are struggling in school right now with people bullying them, just tell someone about it.’

Merrick

“I’m 29 years old and have a learning disability. I also have anxiety (PTSD) from being bullied very badly in school as a kid. I’m an artist, and I’m working on a graphic novel about what it was like to have a disability and be in special ed. I want to help other kids who are going through what I went through and share my story.

“I was 14 when I realized that I wanted to pursue art. I was in middle school when I was the most bullied. It was difficult for me to communicate what was happening, so I needed a way to express myself. When I was young, I read books that made me feel that the person was having the exact life as me, like Shannon Hale’s ‘Friends’ series and ‘Thank You, Mr. Falker’ by Patricia Polacco, who wrote about having dyslexia. It made me feel like I wasn’t alone.

“I’m writing a children’s book to help other children with bullying when they have a disability. I hope that those children will learn that there are other people that have gone through the same thing. We’re hoping my book will be a sensitivity awareness for people who bully, to make them aware how hard other people are struggling, to be kind to everyone because they don’t know what battle they’re fighting.

You’re not alone, so you don’t have to feel like the only person in the world that this happened to.

“I went to an art therapist, and art became the best way for me to get my emotions out. My disability was the catalyst that helped me to perfect my art. I am self-taught through YouTube videos and books. I do everything from stained glass to pottery to abstract art to portraits.

“I also want to give back, so I do cake decorating and make cupcakes through Birthday Wishes for children who live in a shelter. And I cook for 25 people at Bethany House, a shelter for women and children who are homeless. I also volunteered with the Friendship Circle, helping children with special needs have a friend.

“If I could give a message to children who have disabilities who are struggling in school right now with people bullying them, just tell someone about it. Tell a grown-up. I think there were people that tried to ask me, but I didn’t tell them because I thought I’d make it worse. The message of my book is that you’re not alone, so you don’t have to feel like the only person in the world that this happened to.”

Interviewed by Liza Burby

‘Boxing with other people is kind of like a chess game. You have to figure things out; you don’t just start whaling on people.’

Merrick

“I started boxing when I was 15 or 16. My dad got me into it. When I was growing up, I had pictures of myself at 4 or 5 years old with gloves on, but I didn’t know how to box. My dad found this boxing coach and I figured I’d try it out. My entire family boxes: my brother, dad, cousins. I’ve been with coach Nic Gialourakis at Slick Sluggers Boxing in Mineola, and he’s been training me for about four years now.

“I started it for self-defense. I’m a small girl, 5 foot and 130 pounds, and growing up, my mom wanted me to protect myself. I love the sport so much that I’m continuing with it. I’m slowly transitioning into doing it as more of a sport, boxing against men and women.

“I’m 19 now; I manage the boxing gym with coach Nic. I’m not coaching yet, but if I sit down and study the program, I can do it because I have that foundation underneath me. I picked up a lot of skills and techniques.

You have to read people. Boxing is a mental thing; you have to study the sport like a science.

“I was going to John Jay College of Criminal Justice, and I took a semester off, but I’m going back to Nassau Community College for criminal justice. I’m probably going to be a cop in the NYPD; both my parents are retired NYPD, so I want to follow in their footsteps.

“In the first four lessons of boxing, you get a quick foundation — to understand your position, your straight punches, uppercuts and hooks, defensive skills like slipping, blocking and rolling. If you continue, you build up your skills and get a lot more comfortable with reacting. It’s all repetition. With anything you keep practicing, you get better.

“This would help me as a cop. I know you can continue it from there, even the NYPD has a boxing league. It’s 100 percent discipline. I’m very impatient and anxious where I like to get things done. Boxing with other people is kind of like a chess game. You have to figure things out; you don’t just start whaling on people.

“You have to read people. Boxing is a mental thing; you have to study the sport like a science. It’s not just throwing punches. Everyone has their own different styles; you can see what people are going to do.”

Interviewed by Rachel O’Brien – Morano

‘Just remember that you know your body best. You know when you’re not feeling well and when things are off.’

Merrick

“I have mast cell disease, a rare hematological/immunological disease. I had a stem cell transplant in July 2015, using my stem cells. It wipes out your immune system and tries to restart it. Sometimes that works for some diseases. In my case, it didn’t.

“Then I had another transplant in June 2018 from an unrelated anonymous donor. I know he’s male; he’s 35 and from the United States, but that’s all I’m allowed to know. To this day, I refer to him as ‘Mr. Anonymous’ donor. I hope sometime in the future we’ll have an opportunity to meet.

“It started in my 20s. I was having severe reactions and going into anaphylaxis, facial swelling and needed ER visits. I became gravely ill in 2006. It felt I was sleeping on rocks, and my muscles were always in pain. I got weaker, and I lost weight and muscle mass. My hair fell out in chunks and nobody knew what was wrong with me.

“They diagnosed me with a lot of more typical autoimmune diseases – lupus, rheumatoid arthritis, mixed connective tissue disease, chronic fatigue syndrome. My husband found a glaring correlation between my bloodwork and mast cell disease. He found a doctor who’s a world expert. She diagnosed me in like an hour. It was on April 1, 2011, and I said, ‘This isn’t a joke, is it?’

I’m 2 ½ years post-transplant and I’m still on a ton of medications daily; I have to go for treatments to prevent pneumonia. It’s still a challenge.

“She put me on a pretty intensive treatment plan right away and we started to see significant turnaround but not completely. I had a ton of complications after the second transplant. I was in the hospital more than I was home. I developed graft-versus-host disease, so I started rejecting my donor cells and had a reactivation of Epstein-Barr. I had two bouts of pneumonia, I was pretty sick.

“I’m 2 ½ years post-transplant and I’m still on a ton of medications daily; I have to go for treatments to prevent pneumonia. It’s still a challenge.

“Just remember that you know your body best. You know when you’re not feeling well and when things are off. Go with your gut and keep researching. If one door closes, open another.

“My daughter, Samantha, is musically talented, so we created nine songs to tell this story and there’s a new documentary based on that, talking about the power of music. It’s called Second Chance and it’s screening in film festivals all over the world.”