Bohemia. Many may research and unearth the title as a kingdom from long ago, placed in Europe, and filled with gorgeous mountains. For me, when I hear the term roll off a tongue, I associate it with my present-day home. Bohemia is a small town centrally located on Long Island, New York. It harbors mountains of automobiles and classic American families. It is made of many cul-de-sacs with identical housing neatly aligned, fenced in, and isolated. It is the faultless balance of properness and roughness, applicable to any aspect of life, like dialect, crime, education, friendship, and so on. An outsider might see our civilization as easy, simplistic, and maybe even boring; however, this promotes me to remember specifically the memories that deal with overcoming this, finding excitement, and originality, or the memories that do not fit this Bohemian pattern at all.
There were blizzard conditions on December 27, 1993, but this was the day of my birth. I was born into a family that consists of my father, mother, my sister and me, Andrea Marie Baatz. My family has always been the average middle-class household of individuals trying to make it through life together. For my parents this means juggling jobs, housework, and raising two children.
My mom has been in the nursing profession for countless years. Sometimes her career kept her away from us through late, forbidden hours. On these occasions, when my father said, “Come on, it’s time for bed,” I would blatantly use the excuse of, “I’m waiting for Mom,” when in truth, I stayed up to watch the late night cartoons.
As years have gone by, it is hard not to think of how my mom’s career affected my sister’s and my upbringing. On one hand, it enabled her to shelter us and pamper us, but otherwise, my mom was not home extensively, which left my dad with the challenges of raising us. If we did not like food, we would spit it out, hide it under our plates, or give it to the dog. We made him learn to braid hair and re-learn elementary math. Within our shallow walls of suburban perfection, we had food fights, burping contests, crayon-colored walls, and booger covered playpens.
As my sister and I became older, my dad focused more on his self-employed careers. The new alone time together allowed my sister and me to develop both our relationship together and our individuality. Frequently, I was questioned how we ever got along; we were born polar-opposites. My sister is quite the athletic, extroverted type. I, on the other hand, am the nerdy, introverted kid. Still, growing up, we were the dynamic duo. She used to lug me around in our Barbie car, yet she stuck up for me on the school bus. We danced, rode horses, played video games, and compared muscles. This is when the trouble started, though, as life became more complex than either of us could have ever imagined.
When I was born, I was born with Multiple Hereditary Exostoses (MHE). MHE is a disease that causes the extra growth of bones. Having the disease doomed me to severe babysitting with X-rays and doctor’s visits every six months to a year. This meant leaving school for hour drives, in order to see the tickle doctor.
One casual muscle comparison had led to great worry with my parents, and I remember being aggravated. I always thought my dad took all of my condition excessively seriously. I did not want to have to go back to the doctors, but we did.
One unforgettable moment of my life was waiting for my parents to come back after leaving me in this new doctor’s exam room. For the first time, I had witnessed my father’s wet eyes and reddened face.
My family already understood that my condition made me individualistic. One in 50,000 people are born with the situation; however, in my circumstance it was even furthermore unique when the osteochondroma, benign bone tumor, in my right humerus became a chondrosarcoma, a cancer of the cartilage. This is what my parents had learned, with the additional fact that I became the youngest aged person recorded with this condition, nine years-old.
The drive home was confusing. My mom tried to explain what was going on. She began with, “You know those extra bone bumps that you have?”
“Yes,” I replied.
“Well the one in your arm is a bad guy, and he’s eating all your good bones now.” Not even until recently do I think I have understood the severity of the situation.
The new discovery led to a series of tests: an MRI, bone scans, cat scans, X-rays, physicals, blood tests, and a biopsy. The bone scan was a different experience. It required a shot to make my insides illuminate. Certainly, I was crying, which made the resident nervous, and so after putting the blue elastic rubber band around my arm, he left for a long period. I tugged and tested the flexibility of it waiting impatiently. My arm was changing colors and becoming itchy. I was gaining anxiety and my parents were simply furious. It turned out he went to retrieve an actual doctor to do the procedure.
I had the biopsy done at Schneider’s Children Hospital. The place appeared incredible at first, but after waiting in the lobby, we were relocated to the waiting room, which could only hold the feeling of tension. I met with the anesthesiologist who saw my weary face and told me all about her Husky dog. I got into my hospital gown and walked into the room. It was sterile white. I went to sleep and afterwards I had two stitches. I hoped never to see that room again. Unfortunately, it was revealed, I would indeed return, the next time for surgery.
The night before, my aunt met me at my horseback riding lesson and gave me a big black stuffed lab. That rests as one of the last times I ever got on a horse again.
The next day, we went to the same waiting room. The anesthesiologist was there as well, and she showed me a picture of her dog. I returned to the detrimental white room, my stuffed rabbit, named Fuzzy, in hand, and hospital gown on. I received a shot and a mask smothered me. There was counting and I was asleep.
Upon waking, I was most upset that my aunt did not say goodbye to me, although she had and I just did not remember. My mom surprised me with Fuzzy. He had on a bathrobe and a sling on his right arm just like me. This initiated my stay at the hospital.
The first room I shared with a roommate who had an upside down stomach. I was embarrassed for my family member who could not bear to stay and visit due to the smell of vomit lingering from the little girl lying in the next bed over. I was so astounded to experience the feelings that I felt for that young girl. Always sheltered, I never would have thought that things like that existed, and to this day, I wonder how she is.
In my second room, I was by the window. One day my mom asked my roommate if she would like her blinds opened but the act was refused because she was allergic to the sun. I was shocked at the disability this girl had, but she became my new friend. Her name was Ariel. We played cards together. She taught me how to play Kings in the Corner.
There was a terrible doctor there who would wake me in the early hours and shred my bandage off. I loathed him. The first time I saw my scar I became a wreck. I was disgusted at the sight of my staples, and I stopped eating for a week, until the best night of my stay, when my mother made a Thanksgiving dinner. My family was there and so was Ariel’s, and we all dined together. It felt like suburban living once again.
On one of the last days there, I went with my mom to do arts and crafts. I made a doll there, but more important, I experienced deep jealousy of this young girl. She had had a brain tumor, and she had to wear a plastic protector of her IVs. For this reason, my mother had to help her make the doll because the protector restricted the girl from constructing it herself. I was her daughter; she needed to be helping me. I felt guilty afterwards.
While there, I also made Ariel a colorful leaf from tissue paper. Before I left, my mom hung up the leaf on Ariel’s corkboard. She was not there for me to say goodbye.
The day we left, I visited the Ronald McDonald house, which is where my family stayed. I often wonder how the experience affected my family. How had they perceived the situation?
Upon returning home, I was home schooled. When the tutor came, she often scolded me for not completing my work, although I was always an “A” student. I remember feeling obstinate because “the strange lady most definitely did not understand me and my circumstances.” I had physical therapy from a man with weird salt and pepper hair that called me a “schooch.” I was not fond of these meetings.
Although I visited class on picture day, reintegrating into school completely was a challenge. So many people wanted to know what was wrong, and suddenly wanted to be my friend.
The experience took a great toll on my outlook of life. I began seeing and thinking more maturely. In addition, it was difficult for a young child like me to understand the circumstances and severity of the whole thing. However, these complications helped me to morph into the person I am today.
Today, I am sure that hardly any days go by without me being reminded of my past. During my daily activities, people often see my scar and make remarks about it. I tell them a watered down story refraining from any use of the word “cancer,” worrying about others’ judgment. Quite often the responses I receive show I have misguided them as they remark things such as, “You should tell people you were bit by a shark.” It bothers me that in society a person’s survival story has to be entertaining in order to be thought deeply about, when in fact just each ordinary day a person lives is a miracle worth a moment of sentimentality.
For people who do know the truth of my story, however, they too often remind me of it. Since the day I returned home from the hospital, I have been told that some things I will never be able to do, being too strenuous for my arm. When told this, I am inclined to think how my life would have changed without the surgery. For one thing, I might have been an athlete, but for another, I might not have been an artist. Having the surgery meant limited amount of physical activity and no participation in elementary school gym class. So instead, I went to art classes. I believe that this time truly started my interest in this creative outlet which has lasted through to my age now.
I may have hated the idea of physical therapy, a loss of independence, the painful bandage changes, and the questions and fake friendships. However, until now, I have never so much appreciated the experience and the effect it has had on my life. It is strange, but sometimes I feel closer to the people I met in the hospital than to my current friends I have. While I have not seen those roommates and nurses for roughly eight years, I know that they have an understanding of life that we can share.
Overall, by embracing the fear a hospital bestows upon any patient and encompassing the feeling of love, which my friends, family, and doctors expressed, I have realized that no family suburban life could ever be typical. Our houses may look the same, and our cars may run through the same process, but you will realize that in no way is anyone perfect or exactly alike in comparison to another. If you have not realized all of the surprises life has in store, such as this, perhaps it is time to open that freshly painted white picket fence, and explore the world you just do not understand yet. Understand the impediments that all people are comprised of and have learned to live with. Understand the deeper meaning in your surroundings and make sense of humanity. Understand how you can make a difference.