By Paul Anthony
My name is Paul Anthony. I’m 35 years old. I’m a husband, a father and a police officer. I love my life and I love my career but it was a long challenging journey to become the man I am today. Here’s my story.
I was born on February 2nd 1988 in Brooklyn, NY. My mom was just 21 years old when I was born and my father was MIA. I was born with a condition called Bladder Exstrophy which caused my bladder to be outside of my body when I was born. There is no known cause for this birth defect and it happens to about 1 in every 45,000 births. I have been through 21 surgeries and over 100 procedures. There were many ups and downs throughout my life and sometimes I felt like the fight was hopeless, other times I felt like a warrior who was built for battle. While growing up I often felt like I was cursed with a condition that I did not have much control over but as I got older I realized I was also blessed, I had a huge support system. I had a mom that was by my side for every single doctor’s visit and surgery, I had 2 brothers, Dom and Joey that were there for me my entire childhood and never let me use my condition as a crutch to not play a sport or try something challenging, including getting beat up by dom, who happens to be younger than me. i ‘ still convinced he was lucky every time he beat me… all 728 times. I had a large number of cousins who were just as supportive as well as a stepfather who was there for me in his own special way. I also had a handful of aunts, an amazing uncle and a grandmother who all helped raise me. My grandmother was my absolute guardian angel who made me feel like anything was possible. This support system never let me down and they gave me everything I needed to overcome every challenge of growing up with exstrophy, including a bit of tough love which I definitely needed growing up. Considering some of the more severe cases of bladder exstrophy i was on the lesser end of the spectrum in regards to complications and effects on my body.
My moms name is Alice. She tells me my bladder was repaired in the few weeks after my birth but after about 2 years my bladder literally fell apart inside of my body. When I was 2 years old I had a surgery called bladder augmentation. This surgery left a scar across my entire lower back. It also left me in a body cast for several months. I’m thankful I don’t remember much this. The Doctor that performed most of my surgeries was a pediatric urologist/surgeon called doctor Kenneth Glassberg. Dr Glassberg saved my life multiple times and while I certainly dealt with many challenges growing up due to bladder exstrophy, Glassberg improved my quality of life unmeasurably. There were times I didn’t have insurance and he would still welcome me. He even continued treating me well into adulthood even though he was a pediatric doctor. I’ve called him after he retired several times and he has still given me advice and referrals. I know I can call him right now and he will answer. I am beyond grateful for dr. Glassberg. So after my bladder was no longer working Dr. Glassberg took a piece of my intestines and created a bladder for me. This led to a lot of difficulties at first including bad infections, self catheterization, hernias and multiple surgeries to follow. I don’t remember much about the younger years. I do remember being in the hospital a lot, as well as renting Nintendo’s and watching Willy Wonka with my mom every time I got admitted to downstate hospital in Brooklyn. I would even dare to say i got more comfortable in Hospital’s and chaotic situations than I did with most normal activities such as school and the day to day activities of being a kid. The scary thing about being in the hospital all the time is it becomes normal. The prospect of death and chaos finds a place in your heart and head and you become complacent with both. On the other side of the coin, I also became stronger and more resilient with each surgery. I became comfortable with leaving my comfort zone.
Fast forward a few years. I was 11 years old living in Brooklyn. By this time ive had most of my major surgeries and a few very close calls. I was a pretty normal kid. I went to school, played basketball for a church in Brooklyn called saint marks, hung out with my cousins and brothers every chance I got and slept at my grandmother’s house every single chance I got. It was winter of 1999. I was experiencing severe abdominal pain that would come and go throughout the night. This had been going on for several weeks but discomfort was normal considering all of the issues I was dealing with. One night while sleeping at my grandma’s, this familiar pain decided to peek it’s head but this time it was relentless and unbearable. My grandma called my mom and an ambulance. My grandma lived in the projects in sheepshead bay Brooklyn so lights and sirens were pretty normal. It was a rough neighborhood but grandma got along with everyone which led them all coming over to make sure everything was ok. When the ambulance arrived they brought me to the hospital which led to exploratory surgery. The doctors removed my appendix. When I woke up I wasn’t fully aware of what had taken place. My stomach was itchy and very tender. When reaching under the cold white sheets to scratch my stomach I realized there was a rectangular bandage stretching from just under my sternum to just below my belly button. My mom was at the foot of the bed crying. It wasn’t a cry I was used to seeing. I knew I was ok but I could sense her anticipation of me seeing what was underneath the bandage. I slowly removed the bandage. Once I started peeling it down and revealed staples in my stomach. The more bandage I removed the more staples were revealed. My stomach had 18 staples keeping my stomach closed. It looked scary and disgusting. I immediately started crying. I was really good at hiding my lower back scar. I’d Just wear my shorts or underwear a inch higher than normal at the pool, beach or on the basketball court and you couldn’t see it. There was no hiding this scar, it was huge and hideous. My first thought was everyone will know, I won’t be able to hide this.
I returned home the same evening and since it was just an ambulatory surgery. It only took 4 hours for the pain to return. I returned to the hospital where Glassberg was waiting for me. Glassberg was not there for the ambulatory surgery but he was there when I arrived. They ran a few tests and it took Dr Glassberg less than an hour to realize i had an abscess in the lower part of my abdomen. The solution was very simple. They had to drain the abscess. In order to drain it they basically stuck a thin pipe into my stomach while I was awake and let it drain slowly. I still remember the scream I let loose when they inserted the pipe into my lower stomach. I also remember my moms face rushing to the mall window of the door crying while watching 2 doctors holding my arms above my head to keep me still, which I would not have been able to do without them. That’s the thing about being a sick kid, it’s challenging and awful but being the parent of a sick kid, I don’t think I understood how challenging that was until I met my wife and had children. I would get every surgery 10x over just so my boys don’t have to know what it’s like to be comfortable in a hospital. Being a parent of someone with exstrophy, you have to be a warrior too. I hope i never have to be that strong but i’d be ready for it if it happened
After the procedure I was back to being a kid but My back scar crippled me emotionally for a short time after the surgery. At one basketball practice I wore my boxers super high in the front because the scar was worse around my belly button. My teammates laughed of course. Looking back on it, the embarrassing aspect wasn’t hiding the scar, it was feeling that I needed to hide the scar. I realized it back then as well. My family began telling me not to worry what others think. They began to teach me not to be afraid of my story and my truth. This was the beginning of me learning to be comfortable in my own skin. My mom always emphasized how important it was to not care what people think and to be comfortable being yourself. This lesson is one that has never left me.
Through high school I had a few more surgeries but I stayed relatively healthy. As many people know, bladder exstrophy affects every aspect of your life. I had a few serious relationships in my early 20’s. By then I was completely comfortable with my scars and condition that I was just open about it to almost anyone that would ask. Sometimes it was someone at the basketball courts at the park who saw a scar and had an hour conversation with me. Other times people would stare. I never took it personally. If someone judges you without knowing your story, well that says more about them than it does about you.
Fast forward to the age of 21. Most of my surgeries are in the past at this point and I’m living a very stable life when it comes to bladder exstrophy at this point but my life is about to be turned upside down. I was living with my grandmother in Staten Island and I got a phone call from my mom one day. Mom tells me she brought gram in for some testing and she has stage 4 lung cancer. The doctor said she had about a year to live. She was dead in 2 months. This was by far the hardest part of my life. I lost the 1 person I could completely count on. Being a kid dealing with a sickness definitely toughens you up but nothing prepares you for a loss of this caliber. I carry this with me every day. I found a necklace/chain in my grandma’s drawer when she died. Its only left my neck a handful of times since then.
The prospect of death often enters your mind as a child when you go through traumatic Events often. I used to even wake up crying to my mom worried, not about dying from a surgery or in the hospital, instead I couldn’t wrap my little brain around the fact that no matter what I do In life I’m gonna die one day and the world just keeps going. Now I know that is part of the value in life. We only get 1 life. Do not waste it. It’s easy to feel like you’re on borrowed time and adopt an “I don’t care attitude” when you’re growing up spending a lot of time in hospitals but I promise. This is a mistake. Every day counts. Every decision counts. Life isn’t about just making a big decision one day and all of your problems disappearing. It’s about making hundreds of small decisions and the culmination of those decisions. That’s how you create a good life building good habits and shedding bad ones.
If there’s 1 lesson I can pass on to other children that have bladder exstrophy it is this; don’t take too long to get comfortable in your own skin. Everyone has scars on the inside and outside, Don’t let yours define you, but if they happen to define you…own it.
I met my wife Andrea when I was 30 years old. She is literally the best this world has to offer. Kind, beautiful, an amazing mom and has extraordinary taste in men. Ha, Seriously though, meeting Andrea, Levi and Logan was the single best thing to ever happen to me. All 3 of us fit together right away.
We covered most of the hardships of dealing with bladder exstrophy. Here’s some positive things. I learned how to be resilient. An empathy for children grew inside of me that I still carry to this day and anytime I see a child in any kind of duress I want to help. I also learned the importance of not judging a book by its cover. You never know what someone has had to endure. I dealt with a lot of bullying growing up as well. This gave me a great disdain for bullies. There’s many reasons why I became a police officer. I love serving my community, and i’m obviously comfortable with chaotic situations. I also like setting an example for my kids and people around me. I’m a true believer in teamwork as well. But if I had to choose 1 reason for being a police officer it’s because I dislike bullies. I do not like seeing people taken advantage of and I am so thankful that I have a career that allows me to help stop things like this from happening or continuing. Growing up with bladder exstrophy also made me realize that even though I got dealt a crap hand before I even took my first breath, life is what you make it. I now have an amazing wife, an amazing set of step sons, a great family and a career with a great department.
I’m now 35 years old, I’m married to an amazing woman named Andrea and I’m a step dad to 2 amazing boys that make me smile every single day, Logan and Levi. I’m in the process of trying to have my first biological child by utilizing IVF which is of course very expensive. One of our close friend, Paige even started a go fund me for us which also shares more of our story https://gofund.me/943c0815. I’m also a police officer for a great department full of great people. I’ve even met some of my best friends here and I look forward to going to work everyday. I’m also an aspiring writer trying to become an actor. It’s been a very long journey but I’m still climbing. I recently finished my first screenplay and have been taking acting classes as well with the hopes of acting in the movie that I wrote. I guess my point is that everyone has hardships and obstacles thrown at them. Don’t let them get in your way. They may slow you down but keep pushing forward.
So, what am I saying? I’m saying if my difficult, challenging journey brought me where I am today…. I am grateful for that journey. If you’re reading this and feel like giving up or feel hopeless, I’ve been there. Never give up because my journey brought me to an amazing wife and 2 amazing little boys. A great career with great friends. Where’s your journey going to take you…..Better yet, where are you going to take your journey.
You can contact Paul at: PaulAnthony@courage-to-shine.org
© 2023 Paul Anthony and Courage to Shine™
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One Comment Add yours
A beautiful story