‘Mom said, ‘You aren’t coming home.’ My sexuality was a sin. I was punished for making eye contact. The chance I’d pull through was slim.’: Woman survives accident, cancer, ‘I’m ALIVE for the first time’

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“When thinking back to my childhood I am filled with some of the most wonderful and happy memories. I grew up in suburban Long Island with my two amazing adoptive parents, Cathy and Pete. I was an only child and loved every minute of it. I was given so much attention from my parents and close relatives, which I did not have to share with any siblings. However, it was not until I was 14 years old that I found out that I was adopted.

Courtesy of Jen Costa

I remember as far back as elementary school my weight had been an issue. I was chubbier than most kids my age, and so began the bullying at school. Kids would sing mean songs about me that I remember even to this day. ‘Heavy jenny, walking down the street. Heavy jenny, the one you wouldn’t want to meet,’ To the tune of Billy Joel’s pretty woman. I was picked on and pushed around daily. This led to me feeling isolated, alone, and inevitably made me turn to food for comfort.

Courtesy of Jen Costa
Courtesy of Jen Costa

My parents took me to several different doctors and even to therapy. They tried different methods to control my weight and mental health for quite some time, with little success. I would always manage a way to sneak food while my parents were working or not around. As I reached my teens and started middle school, the bullying continued; As did the emotional eating. It was like a cycle I could not seem to break. It started to really take a toll on me emotionally and I began to feel depressed and experimented with cutting myself. I was unsure of my sexuality at this time which just gave the kids another reason to pick on me.

By the age of 14, I was starting to act out and fight with other kids. My mental health was spiraling out of control and my behavior at home began to change too. I was not listening, and I was becoming argumentative. My parents had recently divorced, and it was just a challenging time for me all around. My mom had custody, so I lived with her, but I still spent time with my dad every week. During this time, I was still sneaking food and eating to numb the emotional pain I felt. I did not have many friends and spent most of my time alone.

Courtesy of Jen Costa

My mom tried her best to help but didn’t know what else to do for me. She started to seek outside help, and before I knew what was happening, my mom told me to pack my bags one morning. She said, ‘You’re going away to get help.’ I had no idea what this meant but I did as my mom said, and the next day we were on a plane to San Diego, California. When we arrived, we started the long drive to Julian, California which is nestled in the mountains, close to the Mexico border. I still had absolutely no clue where I was going or what to expect.

We finally arrived and that’s when my mom broke the news to me that I would not be returning home with her. I was being dropped off at an all-girls Christian school for troubled teens. Julian Youth Academy, or JYA for short. This would become a major turning point in my life. To sum it up, I missed my entire first year of high school and instead was at JYA. My mom left shortly after we arrived, and I’d only be able to see her once a month for a couple of hours. I was only allowed to call my mom because she was the parent with custody. One call here and there for a few minutes.

I had NO contact with my father, grandparents, or other family for almost a full year! I couldn’t even write to them. That also meant no contact with friends either. I felt completely alone and even more isolated across the country. Again, I was only 14 years old. My mom was just doing what she thought was best for me. She wanted to help me so badly, but JYA was not what anyone had expected.

Though I was not physically abused, there was some emotional abuse. I was made to feel that my sexuality was a sin and I was not allowed to talk about it at all. They had strange rules such as NO talk, where they would punish you if you were caught talking to or making eye contact with certain girls. The punishment was running up and down full flights of stairs 50 times or writing hundreds of lines repeatedly. You also had an ‘up buddy’ who was just another student who had been there longer. You had to ask your up buddy permission to do anything, even to use the bathroom. Sometimes we were not even allowed to pee with the door closed. We had no privacy and could not express ourselves as our own person.

We were forced to do a bible study and had to honor their beliefs. It became like brainwashing. I was starting to struggle emotionally and did not want to be there anymore. I decided I was going to run away, and that is exactly what I did. I snuck out one night and ran into the woods. We were surrounded by forest and even had mountain lions spotted on campus some nights, but that did not deter me. Eventually, I was caught and taken back to JYA. Soon after this incident, my mom showed up and told me I was going home. FINALLY, after a long year, I was going back home.

My issues seemed to only increase after this. I had missed my first year of HS while away and was enrolled in an alternative school upon my return. I had to do 9th grade all over again. I would not be graduating at the same time as the other kids I grew up with. Because of this, I didn’t take school too seriously. I reached the point of not caring and just did my best trying to make it through each day. When I turned 17, I dropped out and got my GED immediately and passed the test. I was finally done with school.

I soon turned 18 but still struggled with depression. Now that I was done with school, I found myself self-medicating with food again. I was alone often and had a lot of insecurities from being bullied for so many years. I was having some problems at home too and decided to move in with my father. Things were going alright for a while after I moved in with my father. I still struggled with depression but I led a somewhat normal life or so I thought. Things were soon about to change though.

I was 19 years old. Then one night, on December 17th, 2003, I left my house in Westbury, Long Island, and was driving into Queens to pick up my dad’s Girlfriend from work. I was driving on the northern state parkway westbound around 11 p.m. when I came around a bend in the road and happened upon a stalled motorist in the middle lane of the highway. It was late and snowing lightly. It was also just a week before Christmas. In my heart, I just could not drive by without offering to help this man who was all alone in his car.

So, I pulled up next to him and asked him if he was okay. He told me his car stalled and that he needed help pushing it to the shoulder of the highway. I agreed to help and decided I would park in front of his disabled vehicle rather than parking on the shoulder and crossing 2 lanes of traffic to get to him. After parking, I got out of my car and approached his window. He was on his cell phone and told me to hang on one second. As I was waiting, a rush of cars started coming and they were not slowing down. The cars were whizzing by at 60 to 70 miles per hour. It scared me as I was standing in the middle of the highway. I decided I would go stand in front of his stationary vehicle, which was behind my parked car. I was standing between both of our cars as I waited for the rush to pass.

I looked back and suddenly saw headlights coming straight up behind him. It all happened so fast. I heard the brakes screeching, the glass breaking, the metal crunching. I felt myself flying through the air. It almost felt like I was lifted up. As fast as it happened, it was over. All I remember was the deafening silence. I looked up and saw the snow falling and I remember thinking to myself that I must have just died. Soon, the ambulance and police arrived. I could hear them talking amongst themselves and asking each other, ‘How did she not get pinned between these cars?’

I was lucky to have made it out alive. A car plowed into this man’s disabled vehicle which I was standing in front of. He hit into me and then hit the back of my car and pushed it completely out the way. This lady hit us so hard she moved 2 parked cars over 100 feet. The impact was so great, I was thrown out of both sneakers! It was like something out of a movie. I was rushed to the hospital. The accident had snapped my left knee. All the cartilage, muscle, and ligaments were torn, and my knee dislocated. My leg was being held together by my skin. The recovery was long and painful. I was unable to walk or put pressure on my leg for over a year. I became bed-bound and the depression started to sink in again.

Each day that passed I would feel lower, and I would slip into an even darker place. I turned to food for comfort. I spent my days ordering take out and sitting in bed eating. My life had hit an all-time low. I continued to spiral downward. As I kept eating, the weight began to pile on. After several years, I had put on so much weight I was topping the scales at over 650 pounds. I became inactive and lived in my bed. It was a sad existence and I did not care what happened to me anymore. I began to turn to drugs to self-medicate and help me escape my reality. I was a prisoner in my own body.

Courtesy of Jen Costa

Over the next 10 years, I continued this downward spiral of self-medicating my depression with food or drugs. I had become addicted to angel dust, also known as PCP. Anytime I smoked it my tongue would feel funny, but I ignored it. I was unbothered by the risks I was taking. I was becoming angry and lashed out at my friends and family. I hated myself and I didn’t want this life anymore. I figured I had already lost so much, what more could I lose? I was alone. I pushed away everyone who loved me because my drug use had turned me into someone I did not know. But still, I did not care. I ended up losing my apartment and living out of my car. It was not easy being obese and living in a car. The drug use continued. Finally, my mom helped me get into a small apartment and I stopped using the PCP. Things were slowly getting better.

Just when I thought I had been through the worst of life, I noticed a small painful white spot on my tongue. Did my use of PCP finally catch up with me? I went to my primary care doctor, and after being puzzled herself, she suggested that I see the dentist. So, I did. The dentist, also puzzled and unsure of what it was, then suggested that I see an oral surgeon. So, again, I did just that, but I still could not get an answer. The oral surgeon being unable to help me, suggested I needed to see an ENT. So, I did that too! I saw 2 different ENTs from that office, but they still could not help me or figure it out.

None of the 5 doctors I had seen, could tell me what was wrong. This went on for several months. I was told it was an infection. I was given medication after medication. Nothing was working. One day I went back and asked flat out, ‘Doc, do you think this could be cancer?’ To my question he responded confidently, ‘No way! You’re too young for cancer!’ So, I left it at that, but it had gotten a lot worse over the months. The pain had become unbearable. It was getting difficult to eat, and even to talk. We decided to see one more Doctor. The 6th Doctor.

After a 5-minute exam the doctor told me, ‘I’m sorry to tell you this, but that’s definitely cancer.’ Everything went dark. I had…what?? I could not even process what was being said to me! I had asked months ago If it could be cancer and I was told no! He then told me I had been misdiagnosed, and I needed a biopsy right away. After I awoke from anesthesia, I remember not knowing what was going on. However, the looks on my family’s face said it all. The doctor came over to me and told me it was bad. He informed me that I had a very aggressive form of squamous cell carcinoma and that it was already beyond stage 4 and had metastasized to the lymph nodes in my neck. The chances I would pull through this were slim.

I met him again a week later to discuss the plan for surgery, but when I got there, he broke the news to me and my family that he didn’t think I would be able to successfully complete treatment necessary to save my life, because I was so obese the radiation would not get through my neck. He did not feel comfortable performing the extreme operation on me. He then suggested I get my affairs in order and look into palliative care. I was just given a death sentence. Confusion and dread do not even begin to describe the emotions I felt. Suddenly I felt so small and the world felt so big. I felt like I was in a nightmare. Everything was spinning. This was the end, or so I thought.

I did some research and I found Memorial Sloan Kettering cancer center. Coincidentally, they were rated to be one of the top cancer hospitals in the country. To my surprise, they seemed a bit more optimistic. If I had ANY chance to survive, I would have to have my ENTIRE tongue removed! I would also have to have my jawbone sawed in half with a small electric saw to have easier access to the tongue. I would need a neck dissection because the cancer had spread to my neck.

I would also need a forearm flap reconstruction. That is where they take skin and nerves from your forearm to build a ‘new tongue,’ and although the new tongue is in there, it has no movement and no feeling. I would also need a feeding tube inserted into my stomach, and this would remain there for the rest of my life, as I would never be able to eat food again. Despite maximal therapy and surgery, I’d still only have about a 30% chance to survive the next 5 years. I was completely numb. I felt like my life was over. It had to be over. Even if I survived, I would not want to live this way.

Not even a week after my 32nd birthday was the day of my 19-hour surgery. 2 weeks after my surgery, I suddenly could not breathe. My trach tube got plugged up with tissue and I could not speak to tell anyone I was in trouble. I turned blue, blacked out, and my heart stopped. They did immediate CPR, which in turn broke my ribs, and punctured and collapsed my lung. My heart stopped 3 times but finally started again after the 3rd try. The doctors told my family I might not wake up, or If I did, I would most likely have some brain damage from how long I was without oxygen. 3 days later, I woke up with not one memory of what happened. I woke up in good spirits and had no permanent damage. That is when the name strongheart was born!

Courtesy of Jen Costa

The next several months were extremely difficult. I was still so heavy. I could not breathe. I could not speak. I was in a wheelchair and I was so depressed, alone, and miserable. All I wanted was to be normal again. I felt hopeless. I began to seek God and pray, even though I was not really a believer. I felt that I had nothing to lose. So, I prayed. Everyday. Soon after, slowly, but surely, I noticed small miracles begin to happen. Like being told I would never breathe on my own again. Suddenly, my nose opened, and I could breathe unaided! I ripped the trach tube right out of my neck and threw It out the window as I was driving! Soon after, I began to drink liquids. I taught myself and practiced daily. I puzzled the doctors because they could not figure out how I was drinking and not aspirating. Since I had no tongue, nothing was covering my airway when liquids went down. I practiced until I was not using the feeding tube anymore.

Courtesy of Jen Costa

Within months, my weight was FALLING off. I could breathe again! I could even speak again! and I could sustain my own nutrition without a feeding tube! The weight kept dropping and dropping. I used to be an obese, sad, miserable, depressed, angry, suicidal, drug user whose bad choices had given me cancer. But finally, here I am 4 years later, from my heaviest at almost 700 pounds, to a healthy, strong, happy, sober, humble, God-fearing individual. Coupled with 3 excess skin removal surgeries I am now 160 pounds! God had really heard my prayers and answered in the most unusual way. He allowed me to battle cancer and make me appreciate all I took for granted in my life.

Courtesy of Jen Costa
Courtesy of Jen Costa

He made me see for myself that I was stronger than I ever believed. He used me as a tool to help others, to make them see that they too are stronger than they believe. God chose me as his soldier to share the message that sometimes he allows our hearts to be broken so that new light can shine in and eradicate the darkness that was taking over. To make others see, that no matter what we go through, you must remember this life is a blessing!! All the struggles we’ve faced were only just lessons!! In my darkest days, I finally saw the light of GOD and found my true purpose. I was reborn. I had to die a little in order to learn to appreciate how it felt to truly live, and I am ALIVE for the very first time in my life. GLORY BE TO GOD ALMIGHTY!”

Courtesy of Jen Costa

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