Stuck is a very real emotion. The small white office within the Pediatric Rheumatology wing at the New England Medical Center, Boston, Massachusetts will be forever etched in my mind. There were no posters to cheer its young visitors, that sterile rubbing alcohol smell of a place. The Doctor’s desk barely fit, let alone my mom, dad and me, upon chairs huddled close. I held my breath at that moment, waiting for the words.
“We have the results and it’s as we expected, Laura has lupus,” Dr. Cher looked from my mom to my dad. I looked at her for a sign, of what I don’t know. My mom’s head was in her hands, and my dad turned to look at me. I didn’t cry, that wasn’t my first impulse, neither was breathing. She looked straight at me and mustered a smile, “We’re going to get aggressive with your meds and monitor you closely. The good news is your arthritis should be alleviated soon.”
My first alarm was not being able to catch a thrown basketball in P.E. No matter how hard I willed them, my hands would not open. I was embarrassed and tried to fake my way through the early morning class. When the rash appeared over my nose and cheeks, I started using foundation, figuring at 14 it was okay to wear makeup. The thing just turned purple and classmates started asking if I had a bad sunburn.
The pediatrician assumed my mom was placating her hypochondriac daughter during my first visit. “There’s nothing wrong with her,” he whispered to her, out of earshot. Sitting on the papered table, both my hands and face looked fine, normal. After some pestering on her part, mom’s suspicions were confirmed, something was awry. Positive ANA blood test = overactive immune system. It was time to take things seriously.
Vermont couldn’t discern the mystery ailment, so we travelled. I never really minded the 3 1/2 hour drive south. I got a day off school and a shopping spree before the appointments. I had my mom (and sometimes dad) to myself, sans two little brothers. It was my job to be my mom’s eyes when it was her turn behind the wheel, rural Michigan did not prepare this woman for city driving. It wasn’t until years later she improved.
When the news came, I couldn’t possibly predict what lupus would mean to me long-term. Right before that moment, I was more upset that I didn’t make high school cheerleading. I explained to my doctors- my hands didn’t work probably because of the fists I had to make while shouting and jumping up and down during tryouts. I had no idea what lupus was, only that I would always have it.
I was stuck, with a disease of which I had no idea the plans in store. There would always be a memory of the “pre-diseased” Laura, the “normal” person I had once been. For a long time, I longed for that girl. I felt she was a part of me, but was radically different, changed.
Someone once said that our greatest challenges become our greatest gifts, or maybe that’s my quote. It was the uncertainty that scared me most at that tender age, the feeling of being helpless in the face of circumstance. What I’ve learned since is that we are never trapped. There is always something you can do, right now, to improve your life.
For me, that was embracing the health I had left, and building upon it. This was a turning point, not downward, as I had first imagined, quite the opposite.