On May 5th, I'll be participating in New York City's Walk to End Lupus Now®. After being recently diagnosed with Systemic lupus erythematosus (SLE), I've decided that lupus chose the wrong woman. I want to spread awareness of and raise funds to fight this cruel, mysterious, often invisible, and widely misunderstood disease. With lupus, the body's immune system mistakenly attacks its own healthy organ systems. It is unpredictable, has no known cause, and no known cure. I want to change that.
The Walk to End Lupus Now® is an important community event because it raises critical funds to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. I invite you to learn more about the Lupus Foundation of America and the great work we're doing. You can give a secure gift online directly to my walk page and/or you can join Team Squid to walk with me!
It’s difficult to pinpoint the exact moment I knew something was wrong in my body. On its own, each incident may seem like a go of bad luck or the likely outcome of drinking too much or not eating enough. A shattered bone is a back flip gone wrong, a kidney infection a routine ailment, a heat stroke the result of a long day in the sun. I knew it wasn’t normal to lose control of my limbs at a party after only one drink. I knew it wasn’t normal for the same thing to happen after tanning with friends. And I knew it wasn’t normal when it happened a third time and I couldn’t call for help. Most people know the feeling - when your foot falls asleep. Imagine this feeling throughout your entire body, without knowing why it is happening or when it will happen next.
On a bad day, this is what lupus can feel like.
On a good day, it might just be back pain, chest tightness, swollen fingers and knees... You wake up every morning and do a fully body scan - Where will it hurt today? The pain is never really gone, it just sometimes hurts a little bit less. Lupus is learning to take comfort from those good days despite the looming feeling that at any moment, the world could fall out from under you.
My body is my best friend and it's my worst enemy. It allows me to hike mountains, jump out of airplanes, travel the world, and create beautiful things. But for everything I do, I must sacrifice something in return. Lupus is about compromise.
Lupus has taken a lot from me, but it has also been a wonderful gift. What can a disease like this possibly give, you ask? Empathy, gratitude, strength. My life is about seeking moments that allow me to forget the pain, and then filling my days with as many of these moments as I can. This means I will live my life to the fullest and not take my good days for granted... because even for the healthiest of us, these can be few and far between.
I’m grateful for my health despite the obstacles life has thrown my way. On May 5th, I walk for those who can’t walk themselves and for all those who do despite their pain. To the LFA - thank you for giving us hope that together we can find a cure. Now here’s to the good days!