wa1lsh's story

I am going to attempt to write my NF story. As time goes on I am sure it will be added too. I am going to write about my 50 years of knowing that I have had NF.
My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone.
Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed if they bothered me. I can remember some kids in school remarking about these big lumps on my arms, some wanted to know if they could catch it. Being a kid myself I use to tell them that they were African Mosquito bites. I knew what I had and at times had to inform the school doctor when he came around the schools for our yearly check ups.
Other than the few operations that I had to remove tumors, I made it through school OK. It was 1969, I was graduating from high school and the draft was on. I was a low number and felt that I should go sign up and serve my country. I had a background in electronics and had my Ham Radio License. I took a test at the military base and they told me they would send me to radio school. I was glad to hear that news. They then sent me for my departing physical. As soon as the doctors seen me they said I could not be in the military because of my disease. I was kind of let down felt rejected or less than. Most guys in the 1960’s were trying to get out of the draft, Strange me wanted to and see some of the world. This was my first big let because of NF.
I then went into a local electronics school for two years 1969 to 1971. When I finished school I started my own business installing security and fire alarm systems. In 1972 I married my bride Gladys. Through this work I did knew people on the Fire Department and heard that they were hiring. I filled out the application and I got the job as a Firefighter that was in 1973. I still ran my business part time. Also that year I took some classes and became an E.M.T. I was thrill, despite my disease I was moving forward in my life.
In 1974 my wife and I had our first child a little girl we named Jennifer. You can find her story in her own words on myspace. She goes by Jen Neurofibromatosis. Then in 1977 our son Patrick was born, he too is on myspace and he goes by pokertramp. They both have NF and have had several operations.
While I was on the fire Department I did have a few tumors removed that bothered me while I was doing certain types of work. I was always back to work in a week or so.In 1980 I had some friends that were in the National Guard. They ask me to join too. I told them what had happened in the 1960.s where I was refused do to my medical problem. They told me to give it a try. So I signed and and I got accepted in the Army National Guard. I was sent to Fort Sil, OK for basic training. I went through basic training at 30 years old with tumors showing on my body. I made through basic training without any problems. I then came back to Massachusetts to serve with my unit. Within 2 yrs I made it to E-5 Sargent. I was very happy I had a good job as a fire fighter / E.M.T. my military and a nice family Then in 1983 I was having a problem with tingling in my hands and weakness grabbing things. I went to several doctors and they could not find anything wrong with me. I knew something was not right and I was able to get into Mass. General Hospital to get checked out. They found my problem the first day there. I had a tumor between C1 and C2 on my upper spine. They told me that they had to operate right away. I could move the wrong way and the tumor could cut off some major nerves in my neck area. The operation went well removing the tumor and preventing further damage. After the operation I had very limited use of my arms and hands. Because of this I had to give up my job as a Firefighter and E.M.T. I also had to leave the National Guard. All that I loved doing was gone from my life. This was another big let down in my life letting go of something that I truly loved to do. I also had to sell my alarm business, because I could not work. I was told that I was permanently disabled. I did collect for a while and kept forcing myself to do more. I was finally able to get a light duty job in a factory repairing machines. This disease was not going to keep me down. I would have more tumors removed during the 1980’s each time I worried what would happen if I could not work again. I found an answer to this and went back to school part time 1993 while working full time. In 2002 I earned a B.A. from the University of Massachusetts. Through those years I would have several more operations. During one operation that was going to be same day surgery, I woke up 3 days later in the I.C.U. I had another type of tumor on my pancreas called a Pheocromacytoma. I was told they lost me on the operating table and had to bring me back. It was removed a few weeks later.
At this time in my life I am still able to work in the maintenance trades. If anything happens I do have my B.A. where I can use my mind if I cannot do physical work anymore. I do have some tumors on my body that give me pain. The worst one is on the sciatic nerve in my left hip. At times it gives me great pain mostly it happens when I sit for over an hour and a half. I have been told many years ago that it is inoperable. Maybe someday I will check and see what is new and if anything can be done about it.
For now I mainly worry about my children, Jen and Pat. I hope that the doctors can help them and that they find new methods to help all those with NF.