Hi, my name is Danielle Preiser. I am 21-years-young, an undergraduate student at CUNY Hunter, and a very proud sister. Jonathan, my brother, is 26-years-young and a complete miracle. Jonathan has Fragile X Syndrome, a genetic disorder that is very similar to Autism. Jonathan has completely surpassed the doctor’s expectations. He is an inspiration to all. Let our story show you his magic:
Through His Eyes
He ran to me.
When my brother, Jonathan, at age thirteen, came down from the stage after receiving his middle school diploma he ran right to me. Not to my mother or father, but to me. He threw every ounce of his being into me. At that age, he towered over me. Every bit of love and vulnerability was encapsulated in that one hug. It was so tight and so sincere that neither my family nor I would ever forget it. With this hug came the realization of an everlasting duality. I lived in two worlds: Jonathan’s mentality and commonplace normality.
Jonathan has Fragile X Syndrome, a mental impairment resulting from a broken X chromosome. There is no way around the harshness of this diagnosis, it means brain damage. I witnessed the crudeness of such a diagnosis the first time Jonathan and I tried to read the “Dick and Jane” books together. Jonathan was eight. He stuttered as he tried to make out recognizable words like “yes”, “no”, and “dog.” He turned to me and his huge brown eyes conveyed everything. As Jonathan awkwardly laughed, I secretly cried. Jonathan then turned this bleak moment into an extraordinary one; he hugged me. He never does this. Jonathan had never offered this tactile affection to anyone. He does not touch anyone, not even my parents, but I was different. I am still the only guest Jonathan welcomes to his physical and mental world.
Jonathan’s world is a fairytale. It is Cinderella’s slipper, and Aladdin’s New World, in which everything is fantastical and anything is possible. His vision is like that of a tourist who visits New York City for the first time; everything glistens and catches his attention. He is encompassed and overjoyed by the lights that surround him. As we ride in a taxi, I stare out the window and pick out the corporate names: Citi Bank, Trump Towers, Metlife. I identify the superfluous: Gucci, Chanel, and Prada. Jonathan, contrarily, has the eyes of a child. He is blind to the names and marvels at the wondrous architecture, and all of the buildings’ different colors, textures, and sizes. As the taxi storms through the bustling streets, and the buildings briskly escape our window’s views, I forget the previous ones, but Jonathan does not. He is deaf to the horns of the angry drivers and the screams of the careless people; he is so fixated on the desire to connect with each structure. He is so captivated that he will never forget each building’s individuality, each building’s story. Even if the surface is rough, even if the paint is decrepit and the stairs are rickety, each building is perfect in Jonathan’s eyes. This is the same practice Jonathan employs when meeting people. Jonathan is “eXtra” special.
All humanity lives on the same earth as Jonathan but within other conventions, those of normality. Here, the world is a much darker place. Jonathan is Ariel from The Little Mermaid, trying to leave the sea and witness the land. In hopes of teaching Jonathan monetary value and responsibility, my father hands him a twenty dollar bill to get a pack of gum from a local convenience store. As my father and I patiently wait in the car, Jonathan goes into the store. He is so jolly as he skips into the store. Jonathan comes out chomping away on some bubble gum, with the pack in his right hand and a one-dollar bill in his left. My father asks Jonathan for the change and I can not articulate his reaction to the one-dollar bill. I sit in the back seat, disgusted. My father walks back into the store and comes out with the other seventeen dollars and twenty-three cents that the cashier “forgot” to give to my brother. Jonathan did not and will not ever know the malignance behind that money. He will never inhabit this polluted world.
Because of Jonathan, I have come to re-envision my own world. My actuality is two-dimensional.Peering through Jonathan’s unjaded lenses and society’s tainted lenses, I see light and dark, heaven and hell. This perspective penetrates my actions. I believe that there is still good in this world; there are still those who are genuine. With this core concept, I have created One World. This up-and-coming national organization works to unite the special needs and mainstream populations through volunteer service, fundraising, and peer education. However, such integration is not the only goal. I also wish to collaboratively eliminate the stereotypes and factions within each sector. After all, as One World prides: “The strongest force is the power of togetherness.” Although an ideal world is not plausible, Jonathan’s nurture has shown me that hopefulness is. Everyday as I walk down the city streets I smile, knowing the smiles I receive in return prove Jonathan’s world is there, even beyond Jonathan’s binoculars.
My duality makes me the pilot of two lives. Jonathan’s credo, “Pilot your own life,” has been modified to suit our worlds. Being that Jonathan has inborn limitations, I do everything for the both of us. I study, skate, run, debate, and am motivated knowing that everything I do is for two. Our gratification is escalated and our celebrations are exaggerated because every time we both succeed. This merriment will pass over to our adulthoods in which I will be the sole caretaker of Jonathan; eventually it will just be he and I. Yes, I am scared, but I know my hero and his vision will always be the impetuses behind my fire. With this backing, I will do all that I can to sparkle our futures.
Jonathan’s world is a utopia, a place where I sojourn to escape the complicated world. It is a world that many people need religion in order to find, a world that some doubt. But I’m more than just a believer; I see this world with Jonathan. I can spot the spectacle of the buildings in the ghastliness of the dollar bill.
My duality allows reality to surpass normality. Jonathan and I have given each other love and created an eternal bond– the strongest force I have ever experienced. When I picture my brother back up on that stage receiving his diploma, I have dual emotions. In Jonathan’s eyes, this graduation means maturation. In my eyes, my older brother will grow in size, but he will always be the same innocent Jonathan. He is the pristine forever child who colors my world.
He will always run to me.
Now I run for him.