As a little girl, I had high hopes of growing up to be a singing ballerina on a television show. I wasn’t the least bit concerned about my total inability to dance, the fact I’d never taken a single acting or dancing class, or that I couldn’t carry a tune in a bucket. Then, after I discovered paint by numbers and a fro-headed genius named Bob Ross, I decided I was destined to become a famous artist. I spent weeks at a time swiping globs of brightly-colored paint on canvas, guided by microscopic numbers and filled with bliss. I knew because I loved these things, the talent must lie somewhere deep within me, waiting to be unearthed.
Never once as a little girl did I say, When I grow up, I want to get really sick, so sick I have a hard time taking care of my own family ― and then I want to write about it. And yet, in 2015 I was diagnosed with Common Variable Immune Deficiency (CVID). Though I am sicker with infections than are most people (and more often), I love my life. Almost every minute of it.
When I was 12, we lived on a farm. In the front, we had a tree with a long branch that stretched the full length of our yard. I fell in love with different lands and people spending time sitting on that branch, often late into the evening when the fireflies emerged, and my mom yelled that it was time for dinner. I fell in love with words while stretched out across that branch, with the way they could move you, change you and challenge you. That summer I started writing stories; I never shared the stories with anyone.
Life went on, and I grew up to become not a singer, dancer, actor, or painter, but a teacher. I loved being a teacher. I was exhilarated by the moment a student “got it” for the first time, the energy that filled the room as students grew, were challenged, fell in love with words. I relished the look in their eye when they first realized how words could move you, change you and challenge you.
“These ravaging infections were never satisfied, always coming for more of my body, my time, and energy.”- Stacey Philpot
I did not, however, love the sickness that was ever creeping in on me. Each time I’d seemingly conquered one infection, there was another one on its heels, fast, furious, and ferocious. What began as a simple urinary tract infection surged into my kidneys, viruses flourished into deep-rooted upper respiratory tract infections requiring trips to the E.R. and antibiotic shots. These ravaging infections were never satisfied, always coming for more of my body, my time, and energy. In their wake, little of me remained available to offer up to those I treasured most.
These recurrent infections led to recurrent absences from the classroom. I despised the words I sometimes said to my students, I’m sorry I wasn’t here again yesterday. I wasn’t feeling well. I loathed the day I carefully pulled all the inspirational posters down from my classroom walls, too sick to continue. Even on the days I was physically present, I struggled to apply myself mentally, beating back the beasts of pain and fatigue. I told my students I’d be back in a few weeks, but I wasn’t. That chapter in my life came to an end. Classrooms demand consistency to be successful, something my seemingly never-ending infections left me unable to provide.
When that chapter of my life closed, I let my love for words carry me to a new place. It’s a wonderful, hard, and unexpected place. It’s the place I’m standing in right now. It’s the place where I talk about the hardest, most vulnerable parts of my life. I let the words move and change and challenge and connect. I stand in this place, and I shout from the rooftops, If you’re sick, you’re not alone! If you’re sick, you still have value! If you lost your dream or your way, you can still find your way to a beautiful new dream!
So yes, I am sick. My immune system is challenged because of CVID, a primary immunodeficiency disorder that leaves me highly susceptible to recurrent infections and illness. Because of it, each month I receive a treatment that contains antibodies collected from the plasma that healthy people have donated. These antibodies help my body fight off infections. I am forever grateful for the generosity of the people in my support system, and for the opportunities I get to share my story with the world. CVID has left its mark on my life and now I get to leave my mark on the world. Although the dream looks different than I imagined, deep down, I’m still just a 12-year-old girl stretched out across a branch living her dream come true.
A healthy immune system is key to living a healthy life. Shire is a leader in providing support to those with rare diseases, like CVID, a form of primary immunodeficiency (PI). Shire offers a broad portfolio of immunoglobulin (IG) products for people living with PI. Click here to learn more.