As a child I had always enjoyed watching musicals and plays, from West Side Story to Sound of Music, from Gene Kelly to Danny Kaye. In Junior High School, however, my love became personal.
I was never really the funny one. I am not quick witted, and do not think well on my feet. Occasionally I can surprise others with an offhanded joke, but overall, I am not very funny.
One of my favorite teachers was my Junior High English teacher. Reading provided an escape, an escape I thoroughly enjoyed. It was not until my English teacher introduced plays that I discovered my love of reading could bring joy to others.
She assigned roles to each student, and we read the lines from the book as if we were in the play ourselves. We did not memorize roles or perform in front of an audience. We merely read the lines before us. In that anonymity, I learned more about myself than I thought possible. In realizing I could speak in silly voices I was funny for the first time in my life, and I loved it!
At the end of the year our class was going to put on the play, Snow White, in front of other classes! This was my chance to use my newfound ability to impress others, something we are all trying to do at that age.
I never made it to the play, though. I was saddened by the events that prevented this creative outlet, but I was not surprised. I was offered a role, a role I would have gladly taken, but sadly, I could not accept. Instead, I worked on sets, enjoying my time with my friends, painting, preparing for the big day. I still wish I could have seen the play, seen all of my friends trying their best to bring joy to an otherwise ordinary day of school. I tried to be there, but just could not.
Before I tell you what happened, I have to take you to the summer of 1993. Three years after my initial osteochondroma surgery I had to once again have a tumor removed. This time it was on my right knee. The surgery went great, and my doctor was amazing, as always!
My cast had been removed just in time for vacation! We were going to Tennessee for a family reunion, and I was going to swim like I had never swam before. I loved swimming, and was looking forward to getting in the water and pretending I was a mermaid! Sometimes, I live in a very beautiful fantasy world..lol
After a dip in the pool with my cousins I noticed something odd on my knee. The scar from my surgery had a hole in it. Coming out of the hole was a little string. It seemed a bit odd, so I showed it to my parents. My mom immediately called my doctor, who told my mom the worst news possible to my childhood self! I was not allowed to swim!
As soon as we returned home I was to see him, where we discovered it was a stitch coming out of my scar. He fixed the problem, all was well, except for my lost chance at happiness during vacation. Instead of swimming happily with my brother and cousins, I sat bored, waiting for someone to play with me.
As an adult I realize there are much worse things in life than not being able to swim, but as a child, all I saw was the fact that I was different. All I saw was a lost opportunity, simply because of the way I was born.
The following year I had my tonsils removed. Normal surgery, many have it. Nothing new on that front. It would be three more years before my next surgery. In 1997 I had another osteochondroma removed, this time my right ankle.
Recovery went well, and I was so excited to get my cast off, because that meant my mom would take me to the hospital’s cafeteria for a donut and Burger King! It wasn’t until after my appointment that I realized there was one HUGE problem!
Growing up in the hospital means that little embarrasses you. You get used to having people poke at you, look at you, and you have very little shame.
As a girl, I matured early. My mom told me about periods, what to do, and even showed me where the pads were kept in the bathroom. The day I started my period, I didn’t even tell my mom. I just went to the bathroom and did as she showed me just a few months prior. It was no big deal at all.
Because of my tumors, my mom helped me shave my legs the first few times. She helped me navigate all of the bumps on my legs, showing me how not to cut myself. No big deal.
The day I had my cast removed, in 1997, however, we forgot about one thing. At that point, I had my periods, and I was shaving. I was eleven years old. When my cast was removed, a cast that had been on for a few months, we discovered a forest of leg hair underneath!
This would have been no big deal had my mom not been in such a rush to return to work. She had no time to take me home to shave. As an adult, having had a job myself, I realize sometimes times like this cannot be helped. At the time, though, I was mortified! This was a BIG DEAL!
The reason of my agony was the fact that I had to return to school just in time for gym class, with one shaved leg and one GIGANTIC forest of leg hair on the other! Needless to say, everyone laughed.
As I said, though, when you grow up in the hospital, you get used to these kind of events. You learn to not get embarrassed, because that is just the way life is. You learn to deal with your life, no matter how different it is.
In the year 2000, I had trouble swallowing. My mom scheduled a doctor appointment, and a mass on my thyroid was found. Within a few weeks it was removed.
Just a few months later, at my yearly checkup with my bone specialist, the same year of my Snow White play, it was decided that I needed another surgery. I have tumors all over my body, but only ones pressing on a nerve or muscle, causing pain and stunting my growth need to be removed.
This tumor was very large, the largest one my doctor had ever seen. It was on the back of my left upper arm. I also needed one to be removed on the front of my left arm. It was a tiny, pointy one, that I always bumped and it hurt like crazy! Thankfully both could be removed during the same surgery.
For that reason, I could not be in the play at school. A week after surgery was when the play was taking place, and I would still be recovering. I begged my mom to take me to school to watch it. She was hesitant but conceded. We sat on the bleachers, talking to all my friends as they prepared. It was so exciting!
I don’t know if anyone really knows what recovery from surgery is like, until you have one yourself. It takes a long time before your body feels able to perform normal tasks. It is difficult to do anything at times. Something as simple as driving in the car and sitting on the bleachers with my mom was too much for my young body. I felt as if I were going to vomit, and for someone that always got the flu, I knew what it felt like to throw up! My mom took me home just as the play was about to start. I sat on the couch holding a bucket, while my friends enjoyed the fruits of their labor.
I am lucky. The disease I have hardly interrupted my childhood, as it does for others. But it is moments like this I will never forget.
I love the movie, Walk to Remember. In the movie, Mandy Moore’s character said something that I could relate to, “Without suffering, there’d be no compassion.”
I have learned to be thankful for what I have, and content in the life I am given. I learned early on that I have no control over what happens to me, but I can choose how I respond. Sometimes I chose poorly, sometimes with grace, but I always have a choice.
Without moments like these in my past, I would not be the person I am today. I am thankful for my experiences. They have taught me many lessons, and it is my hope that they inspire others.
We never know what will happen to us, and though in the moment we may be filled with anger and sorrow, we cannot see what good may come from what we have experienced. Maybe, just maybe, our experiences can inspire others and provide hope. Maybe our story can impact the story of another.
At the time I felt different. I felt as if I had no control. I felt alone. I know now that I am not alone. We all feel different. We all struggle. We are all in this together. So please, use my story as a beacon of hope. You are not alone. You are beautiful and wonderful. You are you, and that is all that matters!
Was there ever a time in your life you felt different or alone? How did you cope? Don’t forget to comment or reach out to me on:
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