I have been an artist most of my life. Like a piece of my art, my body tells a story. My story is drawn on my face, it’s been stamped on my arms and legs. My hands are pieces of art by themselves.
My entire life, people have been asking me “What happened to you?”
As a little girl, I would explain my scars— without much detail, I’d just simply say that I was sick when I was a baby. It was usually my mother that had the courage to explain why I had missing fingers or why I limped. Or why my face had scars. It wasn’t until I had become a mother myself that I learned how much my mother had been through for me. Having a family helped me see that telling our story could make a difference in other parent’s lives— maybe even save people’s lives.
What happened to me?
I had meningococcal disease. I rarely call it “meningococcal disease” because people draw blank stares when I say it. It’s also known as bacterial meningitis, but even then not a lot of people know much about it. My mom had taken me for baby photos the day before the word meningitis was introduced to my family. We still have the photo— a chubby, happy, healthy 9 month old baby posing for a very 70’s styled baby picture. That picture tells a thousand words now. The day after taking that photo, I was hanging on for my life. One minute, I was a healthy baby and within 24 hours I was the sickest baby in the hospital. Meningitis struck fast.
My symptoms started like a teething baby with a fever, but within hours the fever worsened and I had a weird purplish spot that appeared on my arm. It was time to go to the hospital. Turns out, the appearance of that weird “spot” was what saved my life. That’s “the rash” one of the dangerous signs of meningococcal disease. The disease ripped through my infant body fast. As I hung on for life, a team of doctors worked hard to save my arms and legs, even parts of my face. The hospital would become a place that I would be very familiar with for the rest of my life. Meningitis left my body covered in scars. I lost half of my right foot, I lost parts of my fingers, and my face has undergone over 25 reconstructive surgeries to correct the damage from the disease.
Recovery from meningitis was not easy, but the healing from many surgeries lead me to be the artist I am today.
As a little girl recovering from surgery, I would pass time by drawing. My hands were not perfect, but creating art was something that came easy to me. My meningitis surgeries, my hospital visits and artwork have followed me much of my life. I knew that creating artwork with missing fingers made me a bit different, but I had no idea that my art would someday give my scars a voice to help parents and I could use my art as a platform to educate others.
I feel like every person needs a moment in their life that defines who they are, mine came to me when I became a new mother.
Sadly, my introduction into motherhood wasn’t the best. My husband and I lost our first baby at 2 days old. There I was leaving the hospital yet again in my life, but this time being strong for myself and my husband. My heart changed the day I became a mother and my courage grew. I heard my entire life that it was a miracle I survived a deadly disease as a baby. Although our loss was not related to a disease, nothing became more important to me than to spare other parents heartache.
Today, we have two adorably wild little boys— that I am happy to report have been vaccinated to protect them from meningococcal disease. I am a professional artist and a spokesperson with the National Meningitis Association. I proudly use my artwork as a platform to speak out about the dangers of bacterial meningitis and to educate other parents about the importance of vaccination.