A.S. Face 1518: Chelsea Tossing
On a pretty typical Saturday morning circa 2007, 16 year old me woke up and headed to my job as a YMCA basketball ref. I laced up Nike Shox and started to jog down the court after a second grader who hadn’t quite mastered the whole dribbling thing when I got the feeling that my right foot was buckling beneath me. From there it all happened quickly and inexplicably. Over the next few weeks, the feeling of brokenness spread to my other foot, to my knees, my hand and my hips, until finally I couldn’t get out of bed on my own. At my lowest, I weighed 85 pounds and my mom carried me to the shower in the morning. I was 16. I was supposed to be invincible. I was crushed.
Months and vials and vials of blood later, I was diagnosed with Juvenile Rheumatoid Arthritis, an autoimmune disorder that made my body attack my own joints. But every now and then we cross paths people who embody all the good intentions the world: my mother is one of them, and so is Dr. Terry Moore, a pediatric specialist at Cardinal Glennon Hospital. Together, they changed and probably saved my life. By the time I started college I was walking, skipping and most importantly, getting out of my twin bunk bed on my own. I trained for a half marathon, started mountain biking, fell in love with ultimate frisbee, was normal.
THE NEXT CHAPTER
A couple months ago I went back to a rheumatologist for back and hip pain, crippling nerve pain, swollen knees, a series of ribs sprains and eye inflammation. I was diagnosed with Ankylosing Spondylitis. To be real, the prognosis was pretty terrifying. After struggling with it for the last 8 months, another incredible doctor found something that works. For the first time in actually as long as I can remember, nothing hurts. Last Thursday, I rode my bike 70 miles and then played in two frisbee games and I don’t even have words to convey that feeling. I’m not invincible, but I am unstoppable.
HOPE SPRINGS ETERNAL
The unpredictability of Ankylosing is frustrating. It’s crippling. It places limitations on the independence that I value so much and most of all, it is a constant reminder of my mortality. I cry sometimes because I’m desperate and pissed at biology and genetics and my hips and the fact that no one wants my bone marrow. But as much as I can choose to feel bitter towards these realities, I am learning to be grateful for the ways I’ve grown from them.
I am so privileged to have access to healthcare and resources because I know there are millions, billions of people like me who will never have the opportunity to feel better or much less to have the time or access to sit in their homes and “reflect on their lives.” When I think back to my limited 16-year-old perspective that my life was ending, I can now think of the people who lifted me up from that darkness. I think of my mom and her relentless determination to find me help, the doctor who gave me his personal cell phone number, my dad bearing the quiet and thankless burden of paying the bills. I think of the roommates and friends who have carried me across fields and up stairs and found ways to move me when I couldn’t move myself. The part of me that places my self-worth in my self-assertion has been humbled to recognize that we can’t do this alone. None of us can.
I am proud of myself. I am proud of my body and the limits I am constantly finding and lifting. My interest in biking across the country grew out of a desire to prove something to myself and about myself– about what I can do. But while this may be for me, the lesson to be learned here is not about me. It’s about privilege and opportunity and the power of individuals and communities to do incredible things for each other because we can.
Thank you so much for giving people like me a space to share our story. Happy awareness month!
North Carolina, United States of America