Profiles of Adolescent Survival
Shellby’s stroke occurred when she was 11 years old
When I was 11 years old, I suffered a mini-stroke. I was at cheer practice but was only watching because I had a horrible headache. My mom decided to take me home because I was suffering so much. On the drive home, my mom told me to use her phone and call my friend Alexandra and explain that I would not be coming over to stay the night due to not feeling good. That’s when I realized that my hand wouldn’t work, but when trying to tell my mom, I kept calling my hand my phone. “Mom, my phone won’t work,” I said over and over. She responded that I didn’t have a phone but soon realized that I was suffering from some confusion and became very worried.
I wanted to recline my car seat because it felt like my head was going to explode. When I couldn’t find the seat handle, I tried to ask my mom for help but only garbled sounds came out of my mouth. My mom screamed my name. When I turned to her, she saw what looked like the side of my face melting, and that’s when she knew I was having a stroke.
Panicked, she tried to call 911, but she realized that we were already close to the hospital. By the time she got me inside, things were beginning to go back to normal. I was able to speak more clearly, but I was still confused and gave wrong information about simple things like my name and birthday. The hospital staff took me for some tests and then told my parents that I had a migraine. They wanted to give me medicine, but my mom said, “No!!!” The staff person got mad and said they could only give me Tylenol and send me home. My parents agreed. When they gave me the Tylenol, my headache went away. My mom, who knows about migraines from personal experience, said that showed her for sure that it wasn’t a migraine.
The next morning before I got up for school, my pediatrician called. He had gone into the office early and saw the hospital report that they had faxed over. He told my mom to calmly but quickly gather some things for me, pick up the hospital test reports, and take me straight to Children’s Hospital in Philadelphia, where they were waiting for me in the emergency room.
There I had a bunch of tests done. I was really scared. I stayed there for a few days until I was feeling better, and the doctors were feeling like I would be all right at home.
While waiting for some test results, they had me start taking a baby aspirin every day. The test, called the Russell Viper Venom test, showed that my blood was slightly thick and that was what probably caused the stroke.
I remained on the aspirin-a-day therapy for nearly two years, until my tests all came back normal. I am still afraid it will happen again.
For about a year after the stroke, I suffered from posttraumatic stress disorder (PTSD). I was afraid all of the time and mean toward my family, especially my little sister Rylee. All my grades dropped, and I was in jeopardy of failing sixth grade. Eventually I got better and started to become my usual self.
In addition to being a spokesperson for the American Stroke Association, Shellby is also the reigning Miss Gloucester County Outstanding Teen for the Miss America organization
Although I am mostly back to normal, I am not the same person I was before the stroke. I suffer from depression and anxiety that I am told is most likely due to a chemical change in my brain from the stroke. I have a droopy eye. Even though my mom tells me it is not noticeable, I see it right away.
I am now 16 years old and am the current reigning Miss Gloucester County Outstanding Teen for the Miss America organization. One of my platform issues is the American Heart Association/American Stroke Association. I have attended their training session and am now an official spokesperson for them.
I love speaking to children about stroke awareness. Most people don’t know the signs of a stroke, although I thank God that my mother did! Also people never think of children having strokes. Although it is uncommon for children to have a stroke, I — and many others — are proof that it does happen. I love telling my story and encouraging everyone to become educated on the signs of stroke and what to do to help someone who may be having one.
I can recall 1989 as if it happened yesterday. I was in the fourth grade at Mark Twain Elementary in Dallas. I was at school playing on the blacktop, waiting for the morning bell to ring. I was bouncing a ball around when I suddenly collapsed. I remember trying to use both hands to get up but to no avail — I continued to hit my face and head against the hard pavement.
I started crying, and someone noticed and asked some boys to carry me to the nurse’s office. Even as a 10-yearold I was very determined, so when we made it into the building I asked them to put me down. “I can walk, I can walk,” I said. “Please put me down!” I was right! I could walk … for about ten paces. I collapsed again in front of my locker. Once again I tried lifting my body but could not. I tried numerous times but only succeeded in hitting my head on the unforgiving floor until I blacked out.
I woke up in the nurses’ office with my mom asking how I felt. I was fine, not even a headache. I could stand, walk, talk and even run. We went home and everything was normal. I returned to school and my regular life. Two weeks later, I was outside roller skating alone when I fell again. I started crying and screaming for help. Luckily two older girls heard me and carried me home.
My mom and aunt were at the store, but by the time I got the skates off, they were home, and my very petite mother picked me up and put me in the car. She took me to Parkland Hospital, but I was quickly admitted to Children’s Medical Center. There the doctor looked at me and said, “This child is having a stroke.”
Erica was a typical fourth grader when she suffered a stroke
At that point my entire right side was paralyzed, my face drooping, memory foggy and speech slurred. They put a neck brace on me, and I blacked out again. After countless tests, they found bleeding in my brain. I didn’t have any family history of stroke, high blood pressure or bleeding disorders. Until that point in my life, I was the picture of health. They reported two major events and about 10 mini-events. The doctors told my mother that I would probably never walk again, never drive a car or go to college.
I spent about three months in the hospital. One day, my family had gone home to freshen up, so I was alone in my room. I had to use the restroom and didn’t want to wait on the nurses. I got up and pulled the IV stand into the restroom. I didn’t think about not being able to walk, because I knew I could. I didn’t fall; but when I came out, my room was filled with nurses and doctors. Apparently when I got out of bed, I unintentionally pulled the heart monitors and other hospital stickers attached to my body and basically alerted the entire floor! They clapped and cheered.
That’s the day my life started again. I had to learn how tie my shoes, eat with utensils, write and type with my left hand.
Growing up a survivor presented obstacles when trying to meet people and make new friends. Most of the normal ways children make new friends — organized sports, cheerleading — were out of reach for me with a leg brace and spastic right arm and hand. The Internet wasn’t widely available, so finding a kids’ stroke group wasn’t possible. It was really hard to explain stroke to fifth graders. The kids at school mocked and bullied me. They made me feel ashamed of something that was out of my control. My extroverted, I-can-conquer-anything personality was crushed. I had support at home, but family is supposed to be nice and love you unconditionally. I wanted and needed friends. I was unbelievably lonely. I longed for a conversation that didn’t start with “what’s wrong with your hand?” or “why do you walk like that?”
After class one day in my junior year, my English teacher asked me what I wanted to do? I thought he was asking me just for that class, but his context was actually the rest of my life. I knew I wanted to go to college, but I didn’t have a real plan. His question started a mental reboot of how I felt and thought about myself. I knew that at college no one would know who I was, so I would be free to become who I wanted to be.
I spent the remainder of high school keeping my grades up and joining organizations that forced me out of my comfort zone. With time I grew to anticipate the questions and roll with the punches. After all, people are bullied for all sorts of reasons.
College was amazing. I was so excited to begin a new chapter. Although meeting people was overwhelming, I looked forward to it, having new experiences and starting a new life. That alone time in high school paid off with excellent study skills and a razor sharp focus. My grades were great. I joined a sorority and served as president. I joined lots of organizations that took me out of my comfort zone. I challenged myself. I made lifelong friends, which had seemed impossible.
I was and am very independent, and in college that independence became confidence. My family did not treat me as if I were disabled, instead they encouraged me to attempt anything that interested me. I surrounded myself with people who had dreams and aspirations similar to mine. I realized that I didn’t need to compare myself to others. We all have a story and by accepting mine, I gained my normal.
Once I got out of my way, dating became easy. I learned to be honest and upfront about my stroke and the residual effects. People are drawn to and appreciate honesty. I have kissed my share of frogs, but I met a man with whom to share my life.
I wanted to be a mom but was always afraid of the ‘what ifs’: What if I have another stroke? What if something happens to my baby because of my history? What if I die giving birth? Not to mention the non-stroke related risks associated with being pregnant and giving birth at 35. I researched everything. I assembled a team that consisted of a neurologist, a high-risk OB-GYN and a regular OB-GYN. I had an MRA to ensure I didn’t have any pending aneurysms. The results were favorable, and I was cleared for a natural birth instead of a C-section.
Erica shops for a Christmas tree with her partner, Christopher Swanson, and their son Christopher and daughter Elliet
My next list of fears quickly came when we brought Elliet home. I was afraid of dropping her, not being able to feed her, change her diaper, falling while carrying her or even comforting her on a cranky night. My myriad worries disappeared with practice and paying to attention every detail when it comes to Elliet. I enjoy the daily challenges of motherhood. I wouldn’t trade this experience for anything. I want to teach my daughter to be confident, intelligent, fearless and loving, just as my mother taught me.
Growing up a survivor has made my life anything but dull. It has been a challenge to comprehend that my life will never be the same without much explanation beyond “you had a stroke.” What does that mean for a 10-year-old, a 16-year-old and now a 35-year-old? It took me years to fully accept this as a gift instead of treating it like a curse. Along with a limp leg, the uncontrollable hand and a frozen shoulder, I also had a broken heart that mourned the loss of who I was and who I thought I would be. Not that I had any concrete life plans in place at 10, but that age should be filled with hope and possibility. Instead I was empty, defeated, angry and confused trying to figure out why me.
Why a stroke? Why so young?
I had to face the reality that the whys would never be answered. If I was ever to feel whole again, I had to forgive my body for its daily betrayal. Forgive my mind for regularly forgetting the basics of life. Forgive myself for hating Erica.
Discovering who Erica is took time. Luckily I was born into a huge, supportive family. Without their relentless commitment to my recovery, I don’t think I would still be here. There were many ups and downs, but my family never gave up on me and did not allow me to give up on myself. They taught me how to love and believe in myself no matter what the world says.
Seven foot surgeries later, I still suffer from drop foot; I have varying levels of spasticity in my right limbs. Physical rehabilitation was and still is very hard, but nothing compares to what it took to rebuild my spirit.
This is what I have learned: Take the time to be kind and remember we all have a story. It’s never too late to start again. One question changed my path. You can always change your path or someone else’s just by showing interest.
International Pediatric Stroke Association
A stroke can happen to anyone at any age, including babies, children, teens, and even before birth. The International Alliance for Pediatric Stroke (IAPS) was created to bring together global pediatric stroke communities, uniting in a common effort to advance knowledge, awareness and research for these children.
This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.