Living with Neurofibromatosis

The effects of NF vary from person to person and can be as mild as a few birthmarks and freckling to thousands of small tumors or even brain and/or spine tumors.  Sometimes accompanying the tumors and birthmarks are learning disabilities, bone deformaties, scoliolsis, and disfigurement.

Also verying widely are the ways in which we who have NF deal with our disorder.  For me, I cannot believe God would intentionally give a tumor causing genetic disorder to any person for some grand plan—I believe, however, I have received a great deal of strength from living with this disease.  This strength is, of course, challenged constantly and renewed by those challenges.

It was over 15 years ago that I noticed the tumor on my ear.  I had other tumors by then—small ones that looked like red blotches just below my waistline.  This one was different because it was a smallish lump in the skin next to the ear.  After consulting with an Ear Nose and Throat doctor (and an MRI) I agreed to have surgery.  The ENT, not fully knowing the extent of the tumor’s reach, tried his best and I suffered through seven and a half hours of surgery.  I was 14.

Even while the wound was still healing, I felt changes.  The rapid reappearance of the growth spread beyond the confines of the ear canal and onto the very visible area of my face.  All through high school this persisted, turning the typical uncomfortable experience of high school into a huge ball of introverted self-doubt.  Looking back from my late twenties, I think playing the clarinet in band and running cross country helped save me from becoming reclusive and depressed.  All the while, this inner strength was building and I have journals which contain entries to remind me how hard I worked to stay positive.  What a difference that has made in my life!

It was not until after my freshman year of college that I had the second surgery.  This one was more extensive, done at the University of Chicago Hospitals and nine hours long.  There was no guarantee this would fix anything except that the bulge on the side of my face would be gone for awhile.  The trade-off being several months of recovery to heal the wound that extended from my chin, along the cheek line to behind my ear.

Meanwhile other tumors have appeared over the years, though to much less fanfare.  And I face the reality of this progressive disorder that yes, there will be more tumors…and the dozens around my body will be here for the rest of my life.  But they are not my life. My life is photography. My life is writing. My life is lived in community.  My life is traveling around the world.  My life is enjoying the moment.

And my life is running.  I’m running the Portland Marathon to make a difference for future generations of people with Neurofibromatosis.

Please consider a donation to the Children’s Tumor Foundation.  Help the fight to find the cure for NF.  Help fund the research that will find a drug to reduce and prevent tumor growth.  Thank you.

Donate through my fundraising page through the NF Endurance team.  If you want to know more about NF, visit the Children’s Tumor Foundation website.