I remember it like it was yesterday, my mom being shuffled in by my father and another gentleman, each man keeping her from total collapse and she, staring strangely—distantly upwards, mouth agape. I was just a minute past six years old, my sister almost eight. We were alone and confused yet curiously amazed with the muffled conversations and my mother’s ability to be both present and absent at the same time.
With selfish child-like wonder we pondered to ourselves but may as well have spoken aloud—where was the baby? It’s foolish, in retrospect nothing made sense, although our hunch was correct. One day our parents announced that "pretty soon" we would have a baby brother or sister (this excited my sister and I and spurred us into action—collecting plastic spoons and forks to feed the new baby). And the next we knew we were rigid, almost paralyzed stiff at the site of the shell of our mother.
Eventually (though I’m not sure how) my sister and I became aware that there would be no baby, ever. Mommy was sick and needed her rest. We needed to be quiet, very quiet. Our mother became, at least in my eyes, an object of fascination. At times I followed her, sometimes in silence and peeked through the crack in the bathroom door while she self-injected her medication. At school I was sad and sullen and wanted my mommy back from the abyss of sickness she was drowning in. The sickness I would later learn had ravaged her body and literally pitted her immune system against itself leaving her withered and painfully unable to fight back. I had no concept of death and dying, no model of loss to lean on, but nonetheless, I missed my mother.
A ton of years and a series of remissions and relapses would occur before the reality of Lupus* became my reality by way of my mother. Although my mother’s Lupus has been in remission for several years, there are ever-present symptoms that continue to haunt her, from Pericarditis (inflammation of the lining of the heart), joint and muscle pain, to sun sensitivity. Though life-altering, these setbacks have not stopped my mother from living her life. She is a mother, wife, sister, grandmother, and friend. She eats well and laughs hard. To the ones she loves she gives her all and then gives more. Never missing a beat, my mom is L-I-V-I-N-G.
Over the last few years and through various aches and pains I have often wondered if it’s Lupus or an overactive imagination? Should I be proactive and test for Lupus every year or dwell in the bliss of ignorance? Having been tested only once in the last ten years, I’m undecided and a little intimidated of the possibility. But what I am sure about is one thing; life is worth living—every second.
-If you are so moved to change the future of Lupus sufferers, please check here for more information on making a contribution or walking for a cure.
"Lupus is a chronic autoimmune disease which is the result of an unbalanced immune system that can become destructive to any major organ or tissue in the body." –Lupus Foundation of America, find out more at www.lupus.org