The first thing you should know about NF2 is the proper name: Neurofibromatosis Type II. There are actually two types of NF–NF1 and NF2. In short, NF2 produces benign tumors in the brain and along the spine (it affects the central nervous system), while NF1 produces benign tumors of the nerves outside of the brain and spine. Essentially, I have lots of brain tumors but they are not cancer. My doctors treat my tumors like cancer many times, with rounds of radiation, chemotherapy and surgeries. NF2 is a genetic disorder… it affects every cell in my body.
Each NF case is different!!! That is why NF is so difficult to understand, that and the fact that it is extremely rare. Usual statistics say NF2 occurs only every 1 in 40,000 people. I have only met two people in my life that have NF2. We have each had similiar treatments, but our bodies were all affected differently. You can get the drift of how mind-boggling this must be for doctors.
Why did I get NF2? Only God knows the answer to that question, but here is my journey so far. Let’s start at the beginning, shall we?
Click here to read the long version.
Click here to read the short version.
You might be wondering what sorts of challenges this disease brings to my daily life.
Click here to view my list of past as well as current challenges.
My physical condition and MRI scans say that I should not be walking, or doing many of the other things I do on a normal basis for that matter. Doctors are amazed at the strength that I have left in my body. But I know the truth: it is not my strength, but from answered prayer. I have seen God work in powerful ways during my journey–both in the good news and the bad news. I think Horatio G. Spafford said it best, “When peace like a river attendith my way; When sorrows like sea billows roll; Whatever my lot Thou has taught me to say, ‘It is well, it is well with my soul!'”
If you would like more information, here are some excellent websites about NF in general and NF2 specifics:
My Life with NF2 
Hello, Mel. My name is Steve. I don’t have NF2, but I have FMS and CFS/ME and doctors do not understand these very well, either. I just lost a friend to benign brain tumors, so I try to imagine how hard it must be to endure surgeries and chemo as a constant and it easily overwhelms me.
Like you, my faith in Jesus Christ is a strength and my health challenges me to seek Him everyday for what I need. Would you believe I found your blog by searching for Rich Mullins? I found him in high school in 1990 and his music has deeply influenced me. I only now got to watch Ragamuffin and it was almost like losing him all over again. That said, yes, I would watch it again.
I am working on getting a new blog up in the next few months. CFS makes me work slowly these days. When I do get it going, I will send you an invite. In the meantime, I’m praying for us both. 🙂
In the Land of My Sojourn (Colorado),
Steve
Steve,
Thank you for taking the time to write and share. We grew up on Rich Mullins and saw him in concert before his death. His music (lyrics) has always been a deep encouragement and worshipful tunes!! I stop remembering songs now that I can’t hear them–I doubt that will be the case with his…and a few others like Keith Green or Honeytree (yes, oldies!) 🙂
Thank you for your prayers, and I will pray for you a well.