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Query re Emotional Consequences of NF-TYPE ONE

The following is a copy of a query I sent to Jane Brody (at the New York Times) this past June (2012) re my writings on Neurofibromatosis.

Dear Jane Brody,

As I write this to you, I am aware that this "merry, merry month of May" will end next week. It's a month associated with "spring flowers" brought on by "April showers," but in New York City, where I live and have a lovely container garden on a terrace, it's the May showers that are taking away April's flowers!

But, flowers are not the only thing associated with May. In fact, the month of May is not always so merry. It is also a month filled with attempts to raise awareness for causes and medical afflictions including AIDS, Breast Cancer, and Neurofibromatosis. I am afflicted with the latter which brings me to why I am writing to you:

I am legally blind and on a recent visit to my eye-doctor’s office, his optician suggested I contact you regarding something I’ve written about the emotional consequences of living with NeurofibromatosisType One (NF-1). 

She thought perhaps you could offer me suggestions as to someone at The Times who might be interested in it, or know of places where I might submit it for publication.

I have been legally blind since birth. Additionally, I was born with the rare neurological disorder now known as Neurofibromatosis-Type- One (NF-1). I felt inspired to share my story of the impact chronic illness can have on the emotional life of a child as he/she goes through young adulthood after I had a chance encounter with a frantic female stranger on Columbus Avenue.

The situation went like this: A woman had chased me up the Avenue to ask about how I dealt with having NF. She told me she had recognized the bumps on my skin to be the growths associated with NF because her eight year old daughter had just been diagnosed with the neurological disorder. The woman had never seen anyone else with this condition. She was fearful for her daughter and thought that I looked carefree; and therefore insisted I share my experiences with her child. She did not realize that I was very self-conscious and ashamed about having NF. At the time of this chance encounter, it had only been recently documented that NF-1’s onset begins at birth. For the most part, the disorder is inherited. However, in rare instances, it can be the result of a mutation occurring on chromosome #17. The symptoms progress in childhood and adolescence. The consequences of having NF-1 can be severe; even fatal.

While NF-1 is a neurological disorder, it manifests itself in the form of bumps on the skin known as neurofibromas. These are growths of the cells that surround the nerve. They may occur anywhere on the body where there is a nerve and initially appear as small bumps –usually the size of mosquito bites but often become much larger.

Moreover, adolescence, which can be a particularly testing time, is the stage when they start to become more prominent. The general public’s discomfort with the disfigurement brought on by these growths sometimes causes unpleasant situations for which the result can be an enduring legacy. It is this emotional component of having NF-1 that interests me.

I have compiled some incidents that occurred as a result of growing up with legal blindness and NF in my manuscript; and the strength of my written work is that it follows a child’s emotions surrounding chronic illnesses, then links them to the framing power this has on the view she has of herself as she grows older.

My piece begins in a precocious child’s voice as she tells her story of growing up in the tumultuous 1960s and 1970’s while coping with the consequences of having two chronic illnesses. The time frame is central to my story as there was little information available about NF-1 which made for uncomfortable situations with family and at school.

During my research for this project, I received an e-mail from an official at an NF organization that said “I have been in contact with a mother in the xyz area. She has a son named xyz, who is 11 years old. He is having a tough go with NF-1 and would like to talk with other
kids who have NF-1. If you know some kids who would like a pen pal, his e-mail address xxxx.”

For me, the request in this e-mail, and that chance encounter on Columbus Avenue, confirm a need for my story. My main readership would be those who know children in the young adult through adult age bracket who are afflicted by any illness, but my work would also be useful for teachers, doctors and psychologists or those (i.e. siblings, parents, extended family, or classmates) who wish to understand the inner workings of a person living with a medical affliction or anything else that makes them feel different.

However, my readership is not limited to NF-1 or even to illness in general, but can be appreciated by anyone who feels isolated or lonely because of their “difference.” My story Hidden Sandwiches, does not offer any solutions; nor does it preach, but I hope this highly personal and specific chronicle will provide some insight into the world of those who feel alienated from the rest of society for whatever reason.

I am looking to publish Hidden Sandwiches and thought that given your sensitivity to a variety of issues, you might know who would be interested in my piece.

Please feel free to contact me if you have any questions. Thank you for your time and consideration.

Patricia Youngquist 

As of today, November 19, 2012, I've not gotten a response.

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