My story began 13 years ago, when I was 10 years old. As a kid, I was a little redhead with giant, pink-framed glasses and teeth going in different directions. I loved learning and school, and at the time, I had a perfect attendance record.
Every day after school, I would go to the Girls Club, and in February of that year, I went to see Disney on Ice with the Club. My family didn’t have much money, and this was an unprecedented opportunity. I had so much fun seeing my favorite characters singing and skating. As the bus took us home, I felt positive and happy.
A few days later, I woke up feeling terribly sick. I was tired and groggy, and walking felt like a chore. I pushed myself to go to school, but a few hours later the nurse sent me home thinking I had the flu. Once home, I collapsed on the couch.
That night, I woke up in a panic. Purple splotches covered my arms and legs. Because my legs felt like jelly, I had to crawl up the stairs to wake my parents. Even talking was difficult, but when I told them, “Mom, Dad—something is wrong. I want to go to the hospital,” I could see their confusion turn to alarm as they hopped out of bed to take me to the emergency room. I remember not being able to lift my legs to put my shoes on and bursting into tears as my mom did it for me.
As we drove away from my house, I had no idea that I would never return to my home.
At the hospital, the doctors diagnosed me with meningococcal disease, which is also called bacterial meningitis. They told my family I had a 10 percent chance of surviving the night.
Meningococcal disease is a rare but potentially deadly infection. It’s transmitted through the exchange of respiratory droplets during close contact like coughing or kissing. When I became sick, not many people knew about the disease, though colleges were just starting to recommend vaccination for incoming freshmen. Now health officials recommend vaccination for all kids at age 11 to 12 and again at 16 to help protect them from the disease.
Bacterial meningitis moves very quickly and can cut off the blood supply to your extremities and your lesser vital organs, such as your kidneys. Although the doctors immediately put me on antibiotics, in the end, I lost both of my legs, which were amputated below the knee; most of my fingers; and the function in my kidneys.
During my 10-month hospital stay, I had to re-learn the most common things—how to eat, how to write, how to walk. I had to restart my life. I felt frustration when I failed, but the most joyful satisfaction when I mastered the simplest of tasks.
Four months into my stay, when I was told I might be going home soon, the unthinkable happened. My mother suddenly passed away. Nothing in my life had prepared me for this. I no longer had a home. My father was devastated after the loss of my mom and was unable to care for all of my medical needs. My older sister was 20 at the time and was taking care of my 12-year-old brother. She was also working nonstop to find a suitable home for me. She had to consider that my new family would need to be equipped to help me recover and adapt to my new life.
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Although I was often alone, Heather, the nurse practitioner who first took care of me, came to see me regularly. She visited for breakfast every Wednesday (her day off). She took me on walks and played Connect Four with me, always letting me win. As time went on, we took trips outside the hospital to the arcade or the movies.
During my family’s search for my new home, it was Heather who stepped up. She and her husband, Tony, adopted me in 2000. After I moved in with them, my kidneys failed completely. In what could only be described as a miracle, Tony was a match for organ donation. He gave me one of his kidneys, which I’ve had for 10 years now. When I think of selfless acts, this is at the top of my list. I was given the chance to live again by someone who was a stranger to me just a few years before!
Beyond the physical challenges of surviving meningitis, I struggled throughout my teen years with the emotional aftermath of the disease. Due to my extended hospitalization, I missed the second half of fifth grade. Although I didn’t have to repeat any grades, it was a struggle to get back into the groove of being in school.
Everyone at that age seemed very into his or her appearance, and I was ashamed of how I looked. I wore pants and hoodies year-round to cover my scars and prostheses. I struggled with self-esteem issues for a long time because I looked different than everyone else. My low self-esteem also impacted my ability to make friends during my teenage years. Luckily, over time, I learned to accept myself and began to form lasting friendships. My college years became a different experience because they gave me a fresh start.
This March, I turned 24. Although I still have issues with my self-esteem, I now realize that everyone does sometimes. After years of self-consciousness, I now wear whatever I want. When it’s hot, I wear shorts. I’ll wear a T-shirt and won’t hide my hands. I am finally able to be at peace with my body and enjoy life as it comes.
Life has certainly had its struggles, and meningitis continues to be a big part of my life, but I put effort into thinking about the positive. Yes, I lost a lot. No, it was not fair. But I also gained a new outlook on life, met amazing people, and have been given opportunities that I would not have had otherwise.
Last year, I graduated from Northeastern University with my bachelor’s degree in Psychology. I am taking classes now so I can eventually become a nurse practitioner. I also work with the National Meningitis Association to help educate others about the disease so that other kids don’t have to experience what I went through. I want families to know about bacterial meningitis and its symptoms and to understand that vaccination is recommended for preteens and teens.
If I’ve learned anything from this experience, it’s that life will not wait for you. You have to push through the hard times and make way for the good.