I really can’t remember when I was diagnosed with NF. My first memories of having to deal with the plexiform tumors was in junior high school when I had to deal with the ridicule from classmates and had to deal with their delight in poking me in my right side ( I have a rather painful one there) and seeing me jump.
In addition to NF. I had polio when I was about 6 years old. I was told that I would never walk again. But due to my own stubbornness, and the grace of God (mostly the grace of God), I can walk - I even ran a marathon several years ago.
I was also the victim of sexual, physical, and emotional abuse at the hands of my father. It has taken me years to get to the point in my life where God has allowed me to deal with my father’s sins against me and to place all of that garbage in a pond and put a "no fishing" sign on it. I never really had the self-confidence during high school and college to date much. I managed to get through high school and college and after several years found myself working here in Raleigh at a major computer manufacturer.
After yet another failed relationship, I found myself sliding into what turned out to be clinical depression (It’s hard to do your job well when all you can do is avoiding killing yourself.) The lead doctor at the company I worked for was convinced that my performance problems were due to NF and put me through a series of tests (MRI, etc.)
I was sent to a nueropsychologist who discovered neurocognitive deficits due to the NF As I result of that finding I was placed on long term disability. Being on disability has been one of the most disheartening things that has happen to me because I really would rather be working. (You know, guys tend to draw their significance from what they do.)
During the first year I was on disability, I took part in the US ARMY test at Duke University where I gave myself daily shots of alpha-interferon in hopes that the chemo would make the tumors go away, or at least stop their growth. It didn’t. All that it did was make me sick and deplete my bank account by several thousand dollars in lab and doctors fees that were not’t covered by my deductible
I have no idea of why God has allowed all of the things that have occurred in my life. The one thing that I do know is that I have a choice - to become bitter or I can try and do what I can with what God has given me.
My deepest desire is to meet a woman who can love me for who I am and look past the NF as I would love to be married. So far that hasn’t happened. But I must not give up hope.
David / added March 1999