‘We love our community, get involved in the local chamber and other events, and we’ve donated proceeds to various local organizations.’

Roberta Perry, Plainview

“So much of what I do now is because of my late sister. I started making sugar scrub because my own skin was so bad, and I hadn’t found anything I loved. I was just trying different combinations out on my own dry skin. My sister, Michelle, said, ‘Let’s go sell some.’ I had no intention of making it into a business — that I credit to her.

“In the beginning, I had my whole family involved. I was working side by side with Michelle. My kids were helping out; my parents, too. My mom’s 86 years old now, and she will still come in to put stickers on bags and jars. The fact that I got to work with Michelle and continue to work with my best friend, Wendy, is everything.

“I started selling ScrubzBody products at local craft fairs, expos, and any sort of holiday boutique we could afford and travel to easily. Business took off and, eventually, we were selling in stores like Whole Foods and online on our website. The amount of time I spent driving around to do demos in different stores, some in different states, to try and sell my products was exhausting. I was drained. I realized that I would rather put my energy into people. I wanted that relationship that small business owners have with their customers. We pivoted to retail.

“The timing of this all happening was so weirdly serendipitous and everything fell into place. We opened a storefront in Bethpage and then moved to where we are now, in Farmingdale. We love our community, get involved in the local chamber and other events, and we’ve donated proceeds to various local organizations.

“I am all about pampering and self-love. We use natural ingredients in our products, so I always say that Mother Nature made my recipe, but I made it easy for you to use and give yourself self-care.

“My sister had retail experience, and I had graphic design and business experience. I formerly worked in sales, and it made me realize how easily I could talk to people and how much I enjoyed it. Every piece of what I had done before led to this business – connecting with my customers and community members. There aren’t many places where people walk in and leave feeling better about themselves, and I’m happy my customers experience that at my shop.”

The parties are such a tribute to Michelle. She was always bouncy and so full of life.

“This place isn’t making me rich, but it makes me happy, and that’s worth everything. I get to own a shop that I started with my sister. I get to work with my best friend. I get to make people feel good about themselves. I get to work in this really cool town. How lucky am I?

“Before Michelle passed away, she would always push for hosting skin-care parties. I wasn’t as enthusiastic about them as she was, but I love them now. We host ‘Make Your Own Scrubz’ parties for people of all ages. Women come in with their friends or family, and we’ll pamper them with hand scrubs and lotions. Who doesn’t love a ladies night out? Even kids have parties here all the time. They love making their own signature scent of the Scrubz. We also love catering food from the Farmingdale area. One of Wendy’s great ideas was the phone box, where we tell parents that we’d like to take the kids’ phones away during their parties. It makes such a difference. They are so much more connected. I love seeing them talk and joke with each other rather than be glued to their phones.

“The parties are such a tribute to Michelle. She was always bouncy and so full of life. She radiated a beautiful energy, almost childlike. Every time we host a party here, I can hear her jokingly say, ‘I told you so.’

“After she passed, it was incredibly difficult. Her son lived with me for four years, so we got very close, and her daughter is truly like another daughter to me. I was fortunate to have a wonderful support system in my husband and family, and an amazing friend, Wendy, who stepped up tremendously with the business. Wendy has always shown up for me and for ScrubzBody, and I am so thankful. This business is a collaboration of everyone who ever supported it.

“Michelle was my biggest cheerleader. There’s not a shred of doubt of how much she loved me and how much I loved her. She would be so proud. She is so proud.”

Interviewed by Melanie Gulbas

‘We had a parent of a child with serious developmental issues who wrote on our website that we did “God’s work.” I could never imagine anyone would say that about my work.’

Steven Finkelstein, Plainview

“I was always in love with my bike. I lived on my bike, it was my world. As I got older, I was able to ride places. I grew up in Long Beach, and I did anything and everything on my bike. Now I’m in real estate management and investment; that was much earlier than the birth of my other business, Professor Pedals, but I’m still very passionate about bike riding.

“The original reason for the business, the spark so to speak, was when my son was a little over 3 and I was working with him on his little Diego bike. For some reason, don’t know why, we decided to take off the training wheels. At 3½, he learned on his own to ride a bike. I didn’t do much. That kind of triggered neighbors who saw him at such a young age learning to ride a bike. They thought I was a guru. I really wasn’t. He was ready, he wanted it.

“I still kind of live by that idea. When we are teaching students now, the only thing that’s really challenging to teach someone is interest. I can’t make you learn to play mah-jongg or golf if you don’t want to. If a kid has to be dragged out of the car, it’s probably not going to be the greatest experience. I’m more patient than many, but what’s important is that I wasn’t the parent, which gives the kid a teacher-student relationship. It can be much better than a parent-child relationship, where helmets could be flying, kids could be crying, moms and dads could be screaming and yelling. It’s a big deal.

I was always in love with my bike. I lived on my bike, it was my world.

“Sometime later, after teaching a bunch of neighbors’ kids, I said maybe there is something here. I loved this idea of incorporating bike riding and teaching and helping people, so I started this more formally as Professor Pedals. We quickly expanded; at one point we had eight locations. It took a rewarding turn into helping kids and adults with special needs — autism, vision impairment, developmental issues. We had a parent of a child with serious developmental issues who wrote on our website that we did ‘God’s work.’ I could never imagine anyone would say that about my work. Just when we think we’ve seen the most unique situation, there’s more. Yes, I’m still in real estate, but nothing in my life is as rewarding as this school, this service.”

Interviewed by Barbara Schuler

‘Dogs will come into your life for a reason.’

Josephine Ciuzio, Plainview

“Fifteen years ago, my husband and I got a bulldog, Bella, from a backyard breeder, thinking that was the right way to go about it. There is just so much overbreeding, especially with French bulldogs. This led me to look into bulldog rescues, and I now volunteer for the organization Hurley’s Heart Bulldog Rescue.

“Dogs will come into your life for a reason. I’m married with no kids, and for a time, I felt like I had no purpose. I would go to work then come home and repeat. After adopting Howard, our first rescue bulldog, I felt like I had a purpose again. He woke me up. He came into my life at the right time. Howard, named after Howard Stern, was invited to be on ‘The Today Show’ by Beth Stern, who I met through the rescue. He did campaigns for Tommy Hilfiger, Ralph Lauren and others. I even brought him to a local middle school for a reading event with students. Unfortunately, Howard passed away in 2019, but he threw us into this crazy dog acting world. Bella and Howard spent eight years together, and Bella was in commercials and starred on the show ‘Elementary.’ It was crazy when they first started getting gigs. I had no idea there were agents for dogs!

“I’m a bit of a dog ‘momager’ when it comes to my dogs. We currently have two English bulldogs, Luna and Minnie, who were foster fails, and a French bulldog named Barney. They’re all social media stars, and they’ve done commercials, modeling, campaigns, shows and live skits. Minnie currently stars on ‘Only Murders in the Building.’ I love being on set, meeting new people and seeing the dogs spreading smiles. I’m also a trainer for dogs on set, and I’ve worked on shows like ‘Blue Bloods.’ When it’s just me and one of the dogs on a gig, it feels like a mommy-and-me day out. It’s all thanks to Howard. He totally changed my life. I feel like he’s always with us watching his little bulldog buddies.

After adopting Howard, our first rescue bulldog, I felt like I had a purpose again.

“We donate some of the proceeds from gigs to Hurley’s, and we bring some of the adoptable rescue dogs to gigs so they can become part of the celebrity bulldog life, too. My husband and I are both so thankful to have our dogs in our lives and for the opportunity to support rescue organizations.”

Interviewed by Melanie Gulbas

‘My greatest wish is to live in a world where I can say, “I used to have MS.”’

Plainview

“I go by many titles – I am a mother, a wife, a daughter, a sister and a friend. I have had multiple sclerosis for 22 years. I am proud to be the team captain of Team RoRoRo, the top Long Island Walk MS team.

“In 2001, I was a newlywed just starting my life with the love of my life, David. We were looking to buy our first home and the future was so bright. While trying to have a baby, I got terribly sick. I was experiencing strange symptoms and double vision in my eyes. I went to many doctors to figure out this mystery. I saw a neuro-ophthalmologist and I was told, ‘This isn’t about your eyes; this is behind your eyes. It is your brain that’s malfunctioning.’

“The doctor admitted me to the hospital and ran more tests. They couldn’t explain what was wrong with me. They started me on powerful IV steroids. They also told me that I was pregnant. Here I was lying in a bed on the maternity floor as both sets of our parents arrived to see me. I needed to tell them that I may have a tumor in my brain, but that I was also pregnant. It was bittersweet and frightening.

“They did a spinal tap and an MRI of my brain and saw no tumor. The steroids began to restore my vision, and they released me from the hospital. The doctors told me, ‘Go have your baby. We hope we don’t see you again until you give birth.’

“About seven months later, I gave birth to a healthy baby boy named Jason. About three months after that, the unusual symptoms happened again, this time harder. After many more tests, the diagnosis was confirmed. I had multiple sclerosis. This time they had found the lesions that were hiding so perfectly. I had a disease for which there was no cure. I was devastated.

“Would I lead a normal life? Could I have more children? Within days of my diagnosis, I called the Long Island chapter of the Multiple Sclerosis Society and learned about the various resources, meetings and support that I could take advantage of.

“I went to a meeting called ‘But You Look So Good.’ It made perfect sense. To the world, I looked fine. But I was hurting physically, emotionally and mentally. I attended several meetings and began to wonder how I could give back to the society and pay it forward.”

Twenty-two years later, we have raised over $650,000 for the MS Society.

“Within days, Walk MS Team RoRoRo was created by me and my husband at my dining room table. We sent out fundraising letters to our friends and family. We were hoping to raise $1,000 towards a cure for MS.

“That first year, I think we raised about $1,800, and we felt like rock stars. As my son grew, he sat alongside us at the dining room table and helped us stuff letters. Three years later, my daughter, Emily, joined the team.

“Twenty-two years later, we have raised over $650,000 for the MS Society. Our team attends the MS Walk at Jones Beach boardwalk in May, rain or shine. We are surrounded by family and friends and are by far the largest team, and we remain the number one fundraising team year after year.

“Each year after the walk, we invite everyone back to our house for a huge celebration, with all proceeds going to the MS Society. I know our efforts have contributed to walkers, wheelchairs, homecare services, costly medication and most importantly, research and development, to find a cure.

“Over the years, I’ve also mentored many newly diagnosed people who have received this difficult diagnosis. I share my story with them and show them MS has not defined me.

“Several years ago, we started a yearly scholarship, the Birns Family Scholarship, at Plainview-Old Bethpage John F. Kennedy High School to give a college scholarship to a senior who has made a difference in the lives of others who battle a chronic illness.

“I still live with the hope for a cure of MS in my lifetime. My greatest wish is to live in a world where I can say, ‘I used to have MS.’ Staying positive makes all the difference. I have good days and some not-so-good days, but I push forward.

“MS did not stop me. It has made me more determined to live the best life possible. I embrace each and every day and take nothing for granted. I am raising two healthy, amazing children.

“I have my amazing husband, David, who has stuck by my side in sickness and in health. He’s been my true love, my best friend, my champion and my rock. Our team motto for the past 22 years has been ‘As long as it takes,’ and that’s exactly how long I intend to keep on fighting.”

Interviewed by Rachel O’Brien – Morano

‘She grabbed my face and kissed me. I was head over heels for her, and I wanted her to get everything she ever wanted.’

Plainview

“We met in our senior capstone class in college in 2019. I sat across from her on the first day. She thought I was annoying. I thought she was rude. We didn’t speak for about two months at first, and we had our first encounter when she needed help with a specific camera. We became best friends right off the bat after finally talking. Then, she visited me over winter break and made the first move on me. She grabbed my face and kissed me. I was head over heels for her, and I wanted her to get everything she ever wanted. I really never thought it would go anywhere, but the rest is history.

“We started dating in January 2020, and then when COVID hit, I moved in with her family. When we got back to school that fall, she took a funny video of me and posted it on TikTok. It got a couple hundred thousand views, and we thought it was the coolest thing in the world since it was her first upload. We got lucky. After that, we posted a few more videos, and one in particular about Pokémon, since I’m a huge fan. We didn’t think it would get any views, but it ended up with 24 million. We started off making funny videos just joking around, and it turned into thousands, even millions of views, and then we started getting a following. I didn’t even have TikTok downloaded at the time. She started posting videos every day, and I was just in the videos to make her happy.

“Eventually, I downloaded it and we created a shared account and changed the username to @austinandlexi. More and more of our videos started going viral with millions of views. After graduation, we realized this could pay our rent. The most we ever made was through TikTok. We could do this as a living. We moved in together and kept making videos. We sat down and really wanted to focus on what our niche should be – funny couple videos. We do follow some trends, but we like to stay unique to our own kind of content, and because of that, we’ve actually started trends. Lexi has started a few, she’s so creative.

Still, to this day almost two years later, the hate hurts. Imagine every insecurity about yourself that you’ve never spoken out loud, and now it’s being pointed out by strangers on the internet.

“When we first blew up on TikTok, it was really weird. For both of us. You go from being a nobody to now everyone knows you and wants to watch your videos. One word I became known for was ‘simp.’ It has such a negative connotation, and people commented that word on our videos to use against me. They used it as a derogatory word because they thought that me showering my girlfriend with love was not masculine. I hated how people were using it in that negative light. We flipped that word and turned it into something positive. So now, I’m referred to as the Simp King. We want people to treat their partner with respect and love, and to be able to show emotion without it being the butt of a joke. I shouldn’t feel insecure about the fact that I like to buy her flowers or do skin care routines with her. Nobody should feel insecure about that.

“After I embraced that originally hateful word, our fans started making videos of how they showed their love for their partners. Aside from this, we received our fair share of hateful comments. Someone made a video that got hundreds of thousands of views saying hateful things about us for 18 minutes long. All of this hate led to death threats. We even got our address leaked. It pulled me into a depression. I thought I had to fit some sort of persona. It was hard to be myself on camera and not worry about the judgment that might come from it. You go from having your own personal, private life to now everything being on social media. It was a struggle at first.

“Still, to this day almost two years later, the hate hurts. Imagine every insecurity about yourself that you’ve never spoken out loud, and now it’s being pointed out by strangers on the internet. The hate is still there, but it doesn’t bother me as much anymore. I accepted the fact that I can’t be liked by everyone. In high school and college, I felt like I had to look and act a certain way in order to fit in. That just isn’t realistic. Because of TikTok and our dedicated fan base, I was able to realize that I don’t care what the hateful people say. We are loved by so many of our fans. If someone doesn’t like me, then they don’t have to like me. I’m a nerd and I like being one.

I always wanted to feel accepted by those around me, and now I have that. I didn’t have to change who I am to get it.

“Even though we experienced so much hate, there is so much more love. There are more good comments and more love than there is anything else. The best part about being a content creator with a fan base is meeting the fans. I always wanted to feel accepted by those around me, and now I have that. I didn’t have to change who I am to get it. I get recognized by fans a few times a week and always take photos with them. We also use our platform to give back to our community. We’ve been told by some fans that we saved their lives. We were in Build-A-Bear and a young girl was picking out an Eevee Pokémon, which I have a soft spot for anything Pokémon-related. As we were leaving, the mom told us her daughter is a huge fan, so we started talking to her, and we found out her birthday was in two days. We purchased the Build-A-Bear for her, along with a bunch of accessories.

“It’s the little things that really make a difference, and that’s what a lot of creators, a lot of people, don’t think about. We truly care about our fans. We’ve recently been doing a lot of giveaways from our personal collections, as well as teaming up with another local entrepreneur from Long Island, for these giveaways. As a couple on TikTok, it can be overwhelming at times to work together all the time, but overall, TikTok has made our relationship stronger.

“We get to take our specialties and work together, which not a lot of couples get to do. We don’t always see eye to eye, but at the end of the day, we know the relationship comes first before the job. If we need to take time off and step away, we do. TikTok has brought Lexi and I even closer. The fact that I get to do this with my girlfriend and spend all my time with her has been one of the best things ever. I love working with her.”

Interviewed by Melanie Gulbas

‘We never saw this coming. I’ve been very emotional because it’s been five years since my diagnosis. It’s incredible to have come so far.’

Plainview

“Five years ago, I went through a routine mammogram and sonogram appointment. The mammogram was normal, but the sonogram detected a tumor. A biopsy confirmed that it was stage 2 breast cancer, with it also being in some lymph nodes. I didn’t have a family history. I was in pretty good shape, and I took care of myself. It was shocking and devastating.

“It was a long process, and I had to have surgery and radiation. It was six weeks back and forth to Manhattan for radiation. I was always on the go, and I would frequently just have a protein bar with me. That’s how I got through a lot of my days. Once I was done with everything, I made the decision to put myself back into shape, both mentally and physically. I was 52 at the time. There are things that you can’t control, but there are things you can control, like what you put in your mouth and how you take care of your body. I went to a nutritionist, and she said protein bars are processed and filled with sugar. She didn’t believe in sweets and desserts. She would tell me to take a walk around the block after dinner to get rid of any dessert cravings.

“That didn’t work. I started lying in my food journal and I would complain to Scott, my husband, because I just wanted something sweet. He went about looking for recipes, and he came up with this protein ball. It was exactly what I needed. I was still recovering, so for him to do that for me really just helped me be able to continue on in my healing journey. I wanted to take better care of myself and eat cleaner, healthier and be stronger.

“Fast-forward, and we partnered up with that same nutritionist to sell Scott’s Protein Balls to her customers. We were still making them in our kitchen when we first started selling them to bagel stores. Recently, we began donating 1 percent of all of our sales to the Breast Cancer Research Foundation. Scott calls us accidental entrepreneurs because we didn’t have any experience with this. We never saw this coming. I’ve been very emotional because it’s been five years since my diagnosis. It’s incredible to have come so far. We were so low five years ago, and it’s amazing to be here where we are now and that we’re able to give back.”

When your partner is going through something like this, it’s a very helpless feeling.

“When your partner is going through something like this, it’s a very helpless feeling. I can’t take the pain away, and I can’t take the procedures away. I would have done all of that if I could, but I couldn’t do anything besides be there for her. She’s tough. We got the diagnosis the day before her birthday, just as we were leaving for the airport for our son’s graduation in Michigan the next day. All that hit at one time, and she managed to get through it and come out stronger at the end of the day.

“When she went to the nutritionist and was told she couldn’t have any more protein bars, I could’ve gone to the health food store and figured something else out, but I wanted it to be more personal. I wanted it to be meaningful. I knew I could finally do something to help. I was always commuting to work, and she was always on the go as well. I wanted to do something for her. I found a simple recipe, and I started adding some ingredients. I needed a certain number of calories and certain grams of sugar. I started playing with a spreadsheet and adding how much of every ingredient to put in, and that’s really how I ended up coming up with numbers that worked. After a bunch of trial and error, I perfected it.

“We started with a peanut butter cacao for ourselves, and then our friends were asking for them. Then, we had people asking for peanut butter substitutes and nut-free and so on. That’s why I like to say we’re accidental entrepreneurs. It was a lot of back-and-forth and late nights to come up with flavors that work. So much of what we eat is processed, and since all the sugar products hit the market, all these other diseases have just exploded. It just feels like the time to have a cleaner product – something not processed – is right now. Our ingredients are thrown in the bowl, mixed up, made into balls and frozen. That’s it. It doesn’t use any processed ingredients or artificial colors or preservatives. It’s so important to eat healthy, and I’m just happy I was able to help her in any way I could.”

‘It’s never too late to follow your dreams and pay it forward.’

Plainview

“After retiring from teaching in Corona, I became a poppy for my grandchildren. My son and daughter each have two. I figured if I could teach a class of 30, I can manage first one, then two, followed by three and four. Then came COVID-19 and the months of quarantine. Now what? I decided to fulfill an early goal and write a children’s book. Finding an illustrator who was willing to partner with me fell into my lap through the Plainview Moms Facebook group.

“Bridget Bick, a mother of three young children, always wanted to be an illustrator, although she had been declared legally blind for the last decade. I am hearing impaired, so this was a natural fit. Months later we published our first book, ‘What Would I Be?’ I decided to donate my share to the Mid-Island Y. They do wonderful things for the community, such as food pantries, Alzheimer’s programs and day care.

Zooming my books into my grandchildren’s classes made them so proud in front of their classmates.

“They also run a great pickleball program, where I volunteer as a coordinator. I met some of the nicest people during these sessions. It isn’t easy meeting people with similar interests as you get older. My wife and I consider our new friends like family.

“I partnered with the Y to help sell our first book and then the second, ‘What Do You Get?’

“It gives me great pleasure on many levels. First, Bridget has been able to achieve her lifelong goal of becoming a successful illustrator. Secondly, the money I have donated to the Y is my way of paying it forward. If it wasn’t for my involvement, I never would have met all these wonderful people, lifelong friends.

“Zooming my books into my grandchildren’s classes made them so proud in front of their classmates. It was a thrill for me as well. They are all looking forward to our next books. It’s my pleasure and honor to donate every penny to the Y’s worthy causes.

“So, what’s next? At 73, I started taking guitar lessons. Maybe one day I’ll perform and donate those proceeds as well. It’s never too late to follow your dreams and pay it forward.”

Interviewed by Faces of Long Island staff

‘I always wondered if I went back to my emergency room that first time and they believed me, could things have been different?’

Plainview

“I had a crazy health scare during my sophomore year of college. I was a healthy student and soccer player. I was walking to class and had a headache like I’ve never had before. I remember feeling just very out of it, but I went to class anyway. I was a neuroscience major, so getting crazy headaches is something I knew was not right. I went to the emergency room, and they said it was just a migraine. I went back to my room and tried to recover for a bit, but the pain got worse.

“I went back to the ER that night and again, they said, ‘It’s just a migraine. You’re a college student, so maybe you’re stressed or drinking too much.’ As a science major, pre-med and student-athlete, I thought how crazy it was that they would say this, but I had no reason to question it. I tried to study and be a student again, but I was in the most unbearable pain. When a doctor tells you twice that you’re okay, then you start to wonder if you’re exaggerating like they said. I felt very foolish.

“About a week later, I woke up in the middle of the night screaming in pain. I went back to the ER and finally got a scan, after asking for one in the past two visits. They found a massive blood clot in the veins of my brain called CVST. They rushed me to the stroke center, and I got treatment with blood thinners and pain medications. They think this type of clotting could have been from my hormonal birth control medication. You know all the scary things on the bottle of your medication? For me, I was the one in a million it happened to. That’s why I’m a big advocate for women’s health and being that self-advocate for yourself. I always wondered if I went back to my ER that first time and they believed me, could things have been different? That initial headache I had was called a “Thunderclap” headache. It’s your baseline headache multiplied by 50, so you would know if you’re having one. It’s the worst pain you’ve ever felt – your eyes are blurred, and you’re disoriented. I was 19 at the time and in and out of the hospital. I learned a lot about patient care and what it meant to be on the other side and how sometimes, young women aren’t taken seriously.”

Brain injury is typically invisible. It’s not a broken leg where you can see me limping or it’s not a broken arm where you can see a sling. It’s much more invisible.

“I was trying to manage the clot while still in school with a full academic load. About six months later, I started getting this pulsating sound in my ear. I went back to the doctor and got a scan and they found something called a dural arteriovenous fistula (DAVF). It’s a very rare complication that can cause balance and coordination issues, abnormal blood flow, which is what I was hearing, and the very worst cases it can cause are bleeding, massive stroke and injury. When they caught mine, I was very lucky that it wasn’t bigger than it was. It’s very rare in someone my age. I ended up coming back to New York. My cousin worked at NYU and referred me to a surgeon there and it was nice being so close to home.

“Coming back home really did help. I think I underestimated how important it was to be around family and my lifelong friends, especially when they were at the hospital to support me. The family I have on Long Island really coasted me through. They were instrumental in my recovery. I had to have a cerebral endovascular embolization that involves surgically gluing abnormal blood vessels shut. It’s terrifying, but also amazing that they can do that. Afterwards, I still heard the pulsating sound and had excruciating pain so about two months later, I had another angiogram scan to see if my DAVFs had grown. That day started off as just getting an angiogram scan, but I had to be asleep for it because they weren’t sure if I would have to get the procedure or not. Not knowing was the most nerve-wracking part. I had to get a second cerebral embolization and according to my surgeons, if they didn’t intervene when they did, the vessels could have grown to a dangerous point. They were both considered minimally invasive brain surgeries, but there’s nothing minimally invasive about anyone poking around in your brain.

“Neurosurgery is probably the most personal you can get with any type of procedure, even minimally invasive, because your brain is you. It’s your emotions, it’s your psychology, it’s who you are. Brain injury is typically invisible. It’s not a broken leg where you can see me limping or it’s not a broken arm where you can see a sling. It’s much more invisible.

It’s so ironic that I was studying neuroscience and this happened to me. I think when you know too much about something, you lose sight of it happening to you. I was aware of the clinical science symptoms, but it was definitely jaw-dropping to think, ‘This is me.’ It wasn’t just a case study I was reading.

“Somehow, I finished college on time. My professors were so helpful. It was a crazy two years of unknowns and procedures. I had to self-inject blood thinners and get my blood tested every two days while in school. The nursing staff knew me so well. It’s ironic that I was studying neuroscience and this happened to me. I think when you know too much about something, you lose sight of it happening to you. I was aware of the clinical science symptoms, but it was definitely jaw-dropping to think, ‘This is me.’ It wasn’t just a case study I was reading. I’m extremely lucky.

“I see a neurologist regularly and pain management is something I still deal with, but nothing that’s stopped me from doing everything that I’ve wanted to do. I still have throbbing in the area and sometimes I get blurry vision. My nerves on the left side of my head became so sensitive after surgery that it’s super painful to brush or touch the left side of my head, which is why I usually always style my hair to the right. Other than that, I’m very thankful to be here.

“Even with every hiccup in the road, I was very blessed with the best doctors and team. I think for this type of thing, recovery is ongoing. Becoming aware of limitations is very important. I’m very active and I love to be involved but being able to take a step back and worry about one thing at a time was a learning lesson during recovery. Counseling was also important. I went to talk to somebody because mental health is a big part of any recovery. I played soccer in high school and college and it was kind of a coping mechanism for me in the middle of all this. Whether or not I was supposed to be playing was a different story, but it was always my safe space. A clinician that I worked with helped me through it and he said, ‘It’s not going to be easy, but we’ll get you back to it.’ Being able to play soccer was a goal of mine and I was able to play a bit my senior year; I had to wear a helmet guard for safety. When you go through something like this, it’s really important to take an optimistic approach. It’s easy to get very down and question, ‘Why me?’ On the very bright side, I’m healthy, I’m active and I’m still a soccer player.”

It opened my eyes to the importance of having compassionate and empathetic clinicians on my side because in some of the hospitals that I was in, I had the opposite of that.

“After I recovered, I became even more excited about the neuroscience because I understood the value of it. Going through it was challenging, but it’s helped me be more empathetic and become a doctor who wants to be there not just to help the physical, but also the mental and social. Seeing where that combines – that balance of body and brain – that’s what neuroscience is to me. It opened my eyes to the importance of having compassionate and empathetic clinicians on my side because in some of the hospitals that I was in, I had the opposite of that. I’m also very involved in a lot of recovery and advocacy groups for young people who are dealing with stroke and brain injury.

“I’m volunteering with an organization called SameYou and their goal is to improve rehab all over the world. I think it’s a really great opportunity for me to learn and to try and give back. Unlike different types of ailments out there, there’s not a lot that we know about brain injury. There are people who have severe injuries that alter their personality, their ability to walk and talk and be who they are. They need rehab options and I’m very passionate about finding new ways to help support people who need that kind of recovery.

“I just got into medical school and my spot is being held so I can do a 10-month fellowship in Poland to teach upper-level English to medical students. I studied European healthcare abroad in Denmark the year after all of my medical issues happened. I traveled with my class to medical centers in Berlin, Germany and Poznan, Poland. That was one of the things that got me most excited about coming back to Poland. I’m drawn to global health and I want to help communities that don’t have access to it. Through my experiences traveling and studying, I see myself trying to be an advocate for underfunded populations in brain injury and brain health. I would like to balance the public health side with the clinical side and find ways to support people who need it and may not get access to it. I think the key to understanding health and equity is to study and be open minded. Once I recovered, I got to go abroad for six months to Copenhagen and now, I’m about to start this fellowship and study public health even more. It’s important to put yourself out there and try and learn as much as you can and go where it’s needed. I’m not a clinician so I can’t do clinical things yet, but what I can do is teach and continue to learn.”

Interviewed by Melanie Gulbas

‘We knew a lot of people make donations to charities at Christmas houses, so we decided to have Frosty help get donations for Make-A-Wish.’

Plainview

“My family has lived at 33 Jamaica Ave. in Plainview for 30 years. We have been decorating our house for Christmas for a long time, and we keep adding more to it. In 2014, Newsday posted a story online about a person in Muttontown who had a big Frosty the Snowman, and he was looking for a home for it because he was downsizing. We sent him an email from ‘the characters on our front lawn’ saying they’d love to have Frosty join them! The search for Frosty’s new home was narrowed to 60 people. That June, we went by his house in our Christmas outfits, took pictures in front of Frosty, and sent his owner the pictures. He chose us over the Town of Oyster Bay and Bayville Scream Park, who also wanted Frosty! The only condition he gave it to us under was that we don’t sell Frosty. Frosty was special to his family, and he liked that he was going to another family that would take care of him.

That was the only time I thought I might not make it, like this disease was going to take my whole family away.

“When we got Frosty, he was in bad shape. We had to redo the fiberglass and repair the outside. We found out that Frosty was in the Macy’s Thanksgiving Day Parade from 1960 to 1972. He was auctioned off at Christie’s, which is how he came to Muttontown. We knew a lot of people make donations to charities at Christmas houses, so we decided to have Frosty help get donations for Make-A-Wish. We knew this is one thing we can do for kids facing problems. We didn’t realize it, but when you donate enough to Make-A-Wish, you get letters from children who have been granted wishes. We have a lot of fun with Frosty and the people who come to see him, but when you get the letters, you realize you really did something special. One little girl went to Disney, and she sent us pictures from her first plane ride. Another kid got to be a policeman for a day. We got a letter and picture from him. It touches your heart and you know you’re doing good.

“Frosty comes out at our house on Thanksgiving. Getting him up and running with all of our decorations takes three eight-hour days. This year, my son was Santa Claus and gave out candy canes. Little kids love seeing Frosty because he looks even bigger in their eyes. We get teenage girls that come and take selfies at all kinds of hours. It’s so cute to watch.”

‘I have a lot I want to do and try, but for sure I just want to figure out how to be happy. It’s about time.’

Plainview

“My family life was very chaotic. I never knew what school I’d end up in, or who I’d be living with. There was violence. I never knew when I’d be moving again. I managed to cope with it all through my passions like singing, acting and writing. I figured out it could help me, and then in the future, help others.

“I always enjoyed performing, but my parents never told me growing up I could just sign up for a school play or chorus. Once I got into middle school, I figured out that I could try out for the school show, and I got the lead. But when I came home, my mom thought I was lying. Middle school ended as the problems in my household were peaking.

“A family friend saw this and found a program where I could travel and get an education. I spent two years at a school in the south, which also involved mission trips to Jamaica. We were working with disabled children, abused orphans; I even remember a girl with cigarette burns all over her. I was 15 to 16 years old at the time, and it made me a different human. When I returned home things had gotten a lot better.

I ended up founding Drama for Disorder, a nonprofit where adolescents dealing with personal problems can have a safe space to express themselves.

“My dad said, ‘there’s hope, you’re going to find a college and you’re going to pursue whatever you want.’ He helped guide me to the Long Island High School for the Arts, which I joined as a junior. I took a course called ‘Activism and Performance,’ and it was inspiring to learn I could use originality toward creating change. I knew I wanted to do that.

“I ended up founding Drama for Disorder, a nonprofit where adolescents dealing with personal problems can have a safe space to express themselves. I’m also part of a band, and while my parents both have seen me, it’s my dad who has made the effort.

“One time while on stage, I saw him help sell our band’s T-shirts for us, and that’s an image I want to keep. I can’t say I forgive him for my hectic childhood, although maybe without that I wouldn’t be who I am today. It was beautiful, to see him really trying and supporting me.

“I got into the NYU Tisch School of the Arts, where I’m an acting major, but also double majoring in musical performance. I have a lot I want to do and try, but for sure I just want to figure out how to be happy. It’s about time.”

Interviewed by Ian J. Stark