When I was child, I was a happy kid and enjoyed my life. Growing up in a loving home in a sunny Southern California town, I had most things a kid would want until I turned three and the world around me started to change.

My mother was a nurse at a local hospital, and she noticed  a small bump on the right side of my face but at first thought nothing of it until it started to grow. I was not sure what was going on, so I just followed my parents in what they wanted from me with no questions asked. I saw dozens upon dozens of doctors that summer and still no answer. It came to the point I had no summer and wanted to hang out and play but the doctors appointments would not allow it.  It wasn’t until several months later that one of my mom’s coworkers recommended a doctor, and we went to go see him a week or so later.

As I am sitting in Dr. Ash’s office, I did not know what to think (since I had already been down this road before). After Dr. Ash asked a few questions and looked at my family history, he knew what I had – NF (short for Neurofibromatosis) is a genetic disorder that occurs in 1 out of every 3,500 people. During this time, I had to go through what was the start of hundreds of MRI’s and CAT scan in my life. Two years later, I was scheduled for my first surgery just after Thanksgiving in 1980.  Since I was so young I was terrified of needles so it took three doctors, two nurses, my parents, and my grandmother to hold me down to put the needle in my arm.

The following day after the  surgery Dr. Ash walked in to see how things were going and decided to give me a little speech that I can still remember 37 years later. He said: “Scot, I like you, and you are a good kid, but if you try that shit again I will no longer be your doctor.” So, my fear of shots and needles have changed over the years.

Over the next few years, things were more or less the same with doctor’s appointments and surgeries until 1985 when my father passed away from a heart attack. If I have one memory that sticks around over 30 years later (other than my mother dying when I was 22), it was losing him and not having him to see my sisters and me grow up. In the year after my father died, my mother really did not care what I did (since I was the only boy I was able to do things by myself).  So, in order to get attention from my family I set a few boats on fire. After I was caught, I spent the next few years in and out of juvenile detention.  After the incidents with the boats, I stayed out of trouble but lacked adult supervision. I was an okay student, but since I had to do to most things on my own (find food to eat and wash my clothes) it made my life as a 14-year-old a little harder.

When I decided to take my life into my own hands I reported my mother to Children’s Service and my family life was never the same. I was asking for help in the best way I knew how, but to some members of my family it was a stab in the back. I always thought if I made the right choices life would be better.  I was just looking out for my younger sisters and myself.  I spent the next few years in foster care in Los Angeles, and while these were not the best of times, it more or less saved my life and my sister’s life as well.

As time passed I went from losing my mother and being homeless to making the best decision in my life and leaving California to find my place in life. I moved around the next few years (Iowa, Toronto and New York City).  I knew I was home when I got to NYC. It was rough starting my life over, but I was more determined to find out what I was capable of in life. Since I was a social butterfly, I was able to make some amazing friends, and it lead to me finding the woman who I would one day call my wife.

I have come a long way in my 42 years of life, from a crazy kid who loved cartoons and fishing with his father to a young man who had his fair share of problems, but I knew things would get better. I look back and if it was not for knowing that my life has a meaning and I will one day find happiness and have good people in my life, I wouldn’t be here.


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