After so many years of heartache, the purpose of my journey is clear…
By: Marisa Zeppieri
I was in my 20’s when my life changed: I walked to my car on a balmy South Florida evening after a long shift at work, and in doing so, got up close and personal with the bumper of a drunk driver’s Ford Ranger. Being run over by a pickup truck at 50 miles per hour not only almost killed me, it changed the entire trajectory of my life.
It was the quickest (yet slowest) event I had ever experienced. I will never forget lying in the road, covered in blood, unable to move. My thoughts were fixated on my mother and if I would ever see her again.
I never even said goodbye when I left the house that morning.
Recovery took almost a year — there was a lacerated liver, head injury, and fractures to contend with. But as bad as my injuries were, I didn’t spend too much time focusing on them. I was mesmerized by the fact I was still alive. The worst part was being trapped in a hospital bed and rehabilitation center learning how to walk again. Life was buzzing all around me and I just wanted to participate.
Little did I know that part of my life was over.
A few months into recovery, I was making great progress… until I had a small stroke. Soon I was covered in a rash, experiencing strange fevers, pain, and purple hands.
My mother was strong during this time; I, on the other hand, was a complete disaster.
Because I was under the constant medical care of multiple specialists, testing began immediately for various illnesses. Three weeks later, it was confirmed: I had systemic lupus. What in the world was lupus? Who knew I would slowly become an expert on this chronic, inflammatory autoimmune disease that affects approximately 5 million people around the world.
The next several years proved to be quite an adventure. Me, my mother, and my husband learned a lot about blood clots and mini-strokes, IV treatments and brain aneurysms. I became skilled at making hospital garb look cute and my poor husband became acquainted with having a bed toilet in the house — he was a real trooper.
Becoming wheelchair-bound for a season and going on chemotherapy for a severe flare were definitely my lowest points, but nothing in this series of unfortunate events diminished my spirits. In fact, it fueled my motivation and desire to do something important with my life. Having to endure traumatic events show us not only what we are made of, but also what we are capable of. I figured, having successfully survived this sh*t storm, I could surely get through anything, right?
And just like that, many of my fears in life diminished. Even though I was stuck in bed for many years, needing help to bathe and eat at times, I never lost the ability to write. I came up with the idea to start a lupus blog after meeting many people with the disease who felt alone or ashamed of having an illness that was mysterious and misunderstood.
I wanted to create a community for my fellow spoonies, as they are often called in the chronic illness world. So, in 2008, I created LupusChick. And what started out as a blog eventually became a nonprofit. Working with patients and their families gave me a clear picture of what they needed, and so it was important to create programs, such as an emergency assistance fund and college scholarships, through LupusChick.
After so many years of heartache, the purpose of my journey is clear: Although I did not get to finish college, it brings me great joy to help others realize their dreams. I realized a significant challenge can sometimes be a blessing in disguise, although it typically does not feel that way at first.
Facing death and an incurable illness were the two most terrifying things in my life, but I am grateful for both for shaping me into who I am today. I’ve learned compassion and love go a long way, and the joy we feel when helping someone else is forever greater than the pain life can sometimes bring us.