I suppose my story is no different from the rest. I, too, am a member of the "doctor of the month club" and am affectionately referred to as "Slash" by my husband and family in honor of my many VHL scars. I, too, have cared for loved ones who have undergone excruciating and horrendous procedures, and then stood by and watched as they passed on alone to the world beyond. I, too, look into the faces of my children and wonder.

When I was first diagnosed with VHL, I saw it as a thief robbing me of my future. You, too, would understand. In desperation and fear I fought hard. Every scan and checkup that came back without change was my victory, and we celebrated. For a time, the battle consumed much of my energy and thought.

I'm not sure when it happened or how, but one day when my strength was nearly spent, I stopped fighting long enough to view my adversary. My foe presented itself and I recognized it as a part of me and a part of who I am. Together now we visit the doctor and have our scans, and I ask VHL, "What is it you are going to teach me about myself this time?" It has taught me much. You, too, would understand.

I cannot help but believe there will be much VHL will teach us about all in our human family. I join with you in this great pursuit.

As published in the VHL Family Forum, 4:1, March 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.