The first time I ever heard the word Lupus I was eight. My mother had been in the hospital for quite sometime. They had no idea what was wrong with her. Then my father told me she had Lupus after I returned home from the neighbors where I had eaten ham sandwiches for dinner.
I have no idea why I vividly remember the ham sandwiches. But I do. Though other than the word Lupus, I have no idea what else my father said, what he told me. If he told me anything else at all. But I remember the ham sandwiches.
The next time I heard the word, it was from my mom's doctor, at the hospital the next day or the day after. I remember walking on my tip toes, trying to look older than I was after reading the sign in the elevator that said "No Visitors Under the Age of 16". The doctor told my father, brother and me that my mom had Lupus and that he thought it would kill her but we needed to be strong for her. I distinctly remember glaring at him, most likely through him.
He told me she had it, that she would die, but not what it was.
My mother did not die and she got another doctor. And I continued to hear the word Lupus peppered throughout my life on a regular basis. But, I had no idea what it really was until I was teenager. And then all I knew was that when you have Lupus one's immune system attacks one's body like a disease. And while I still pretty much tell people exactly this when they ask what it is, I obviously have a far greater grasp of it now.
It is a word that has hung over me like a halo for nearly 4/5th of my life. Sadly, it is likely the most important word in my life. While it does not define me, I can not understand me or think to describe me without it.