PERSONAL STORY NETWORK
My Lupus Box
I was diagnosed with nine of ten clinical symptoms of lupus in 1983. My mother took me to Duke University Medical Center to get it figured out – a long way from our home in Warner Robins, Georgia.
Let me set the stage here – it's 9th grade. Most girls my age were chasing boys, cheerleading, reading PG-13 books written by Judy Blume that Mama didn't know about, enjoying life outside under our gorgeous Georgia pines. I was dealing with extreme fatigue, migraines, swollen and bloated joints, a butterfly-shaped rash across my freckled face, low-grade fevers, massive hair loss, sun and light sensitivity, issues with deep breathing (pleurisy), and 30 pounds of extra weight I had no idea how – or why – I had gained. On top of all that, the doctors said I had a propensity for blood clots and ulcers.
My mother gave me a yellow box covered in flowers that she had decoupaged (so late '70s, early '80s – right?) when we got home from the hospital. It became my Lupus Box. I put everything inspirational I could find in our public library – books, magazines, lyrics (From Helen Reddy's "I am Woman" to Amy Grant's "My Father's Eyes") – in this lupus box. There were no books on lupus, but there were lots of books on inspiring women who climbed over extreme hurdles to be successful. I learned a great deal about Annie Sullivan and how she created a roadmap for Helen Keller; about Juliette Gordon Lowe and how she created the Girl Scouts, about Flannery O'Conner, who battled autoimmune disorders herself.
Turning to My Lupus Box for Inspiration
When I was sad or discouraged about my progress, I would open my box. When I was trying to stay on my diet – but I really wanted to stray – I would open my box. When I was trying to make a decision about the next step in my healing, I would open my box. Twyla Tharp, the internationally acclaimed choreographer, says, "before you think out of the box, you have to start with a box." I used the Lupus Box as my barometer – my North Star. It helped me create a roadmap toward wellness – intellectually, emotionally and physically. The stories inside helped me make smart decisions about each and every step of my life path, and helped shape my personal character.
If you have just been diagnosed with lupus, my heart goes out to you. No two days are ever the same. Because we have all been uniquely and wonderfully made, no two friends with autoimmune disorders face the same challenges. And the steroids – oh my gosh, they turn your world upside down.
But, with all my heart, I encourage you – if you start a box, you can use those contents to shape your world for the better.
Elyse Hammett is a partner in a public relations firm, the mother of a teenage daughter and lives with her husband in Atlanta, Georgia.