Dear EpilepsyNYC Community,
I am Kate Spratt. I am 28 years old, and I have epilepsy.
When I was six years old, I had my first seizure: on Christmas Eve, I was looking at the twinkling lights on our Christmas tree and my Grandma was talking to me but I wasn’t responding, I just kept looking at the lights.
However, I don’t remember this. All I remember is waking up in the hospital and being very confused. Worried that I was going to miss out on Christmas, I spent that night in the hospital having multiple tests and a spinal tap done. After that, for the next five years of my life, I was seizure free.
Then suddenly, when I was eleven, I had three grand-mal seizures and I was put on medication. During my pre-teen and teenage years, my seizures were under control (for the most part). I did have some “jerks,” but they didn’t affect me enough to debilitate me. I went to school, hung out with my friends, and participated in after school activities. I am grateful for that. I didn’t really talk about my epilepsy when I was a teenager, only a few of my close friends knew. Looking back, I think I didn’t tell people because I wasn’t sure how they would react.
Then, when I was around sixteen, I was in class one day, about to take a test, and I had a seizure. Next thing I knew, I was on my side, on the floor, and the ambulance was there. Luckily, my teacher at the time, used to work with children who had epilepsy and knew what to do when a student had a seizure. I had never had a seizure in school before. I was very tired (as I usually am after a seizure), but mostly very embarrassed. I swore I wouldn’t go back to school.
That night, the teacher called my house and spoke with my mom. She wanted to see how I was doing, and knowing I was probably embarrassed, also wanted me to know that everyone was very concerned about me. When my mom told me, I was relieved, but still kind of nervous of how people would react. Upon my return to school, no one said anything. When one girl shyly asked if I was feeling better I realized people were concerned. It was time to tell my friends, all my friends. Because seizures can happen, anywhere at any time, and people should know what to do.
Opening up about my epilepsy made my classmates comfortable enough to open up to me. I realized that a lot of people had family-members who had it too, while others, who were not familiar with epilepsy, wanted to know more. I knew then it wasn’t something to be embarrassed about; it was just a part of me. I think of it like this: some people have allergies, some people have asthma, and some people have epilepsy.
I proceeded to go to college and graduated with a Bachelor of Science in Secondary Education, with a 3.15 GPA and in four years. I did miss days sometimes because I had seizures and couldn’t go to school. I once even fell down the stairs on campus because I just kept walking and couldn’t stop. Graduating college was a huge accomplishment for me, because of how challenging it was at times. I couldn’t pull “all-nighters” like other students, and the workload could be quite stressful.
After graduating from college, I found a job that I loved at an after school program. On May 18, 2009, while I was taking a shower to get ready for work, I reached over, simply to adjust the water temperature slightly, and had a seizure, which caused me to accidentally turn the hot water on all the way and fall down. I don’t know how long I was under the scalding hot water and when I re-gained consciousness I didn’t even realize I was burnt; it was like I was in a fog. Twenty percent of my body was scalded and I had third degree burns. My whole back, my left arm and my thumb were burnt. I was in the hospital for five weeks. They said if I had passed out face forward I would have died. I had three skin grafts, I couldn’t walk, I couldn’t bend down, and I didn’t have range of motion in my arm for months. I had to wear compression garments for a year and do months and months of physical therapy in the hospital and everyday at home with my dad.
Ever since 2009 my epilepsy has gotten worse; the doctors don’t know why this is or why I even have epilepsy. No one in my family has ever had it, I never ran fevers as a child, or had any head injuries. I’ve been hospitalized numerous times and endured all sorts of different side effects brought on by my medications. I’ve been on so many different medications it feels like I’ve been on every AED out there.
I have my ups and downs with my epilepsy. I try to stay strong or say that I’m a medical mystery, since no one knows why or how my epilepsy has gotten worse. It’s always great when you take a few steps forward but such a defeat when you then take those steps back. Because of everything that has happened, especially in the past few years, people don’t understand how I’m an optimist. When it comes down to it, it would probably be easier to be a pessimist, but it’s important to appreciate the good things in your life, like your family and friends, the moments when you’re not having seizures, and most of all, the fact that I’ll never give up hope for that one day when I’ll stop being a medical mystery.
Emely Gomez is our angel in heaven. She passed away from a seizure in 2012, age 23. Her identical twin sister Katherine Gomez, father Miguel Gomez and entire family and friends walked together in support of the Epilepsy Foundation to help spread awareness and hope to find a cure for Epilepsy. Emely was and will always be an inspiration.
Emely completed her bachelor’s degree in Speech Language Pathology, was pursuing her Master’s Degree in Special Education and was engaged to be married. Her day time job was teaching kids with special needs for over four years. She received her Zumba instructor licence spreading her positive energy with dancing. Everyone knew Emely with a big smile filled with love for everyone.
Ten years ago, our life was changed in a blink of an eye. Justin was only six months old when he had his first seizure. My husband and I rushed him to the hospital to figure out what had happened to our infant son who was sleeping so peacefully only minutes before a seizure struck. While being transferred to a second hospital, he suffered a second seizure. At the time, my husband and I were terrified for our son’s life, we thought the worst and were uncertain if the seizures might prove fatal or not. After Justin was released from the hospital with no diagnosis, we saw several doctors, none whom were able to give us a prognosis. Many said, “It was an isolated incident and Justin will grow out of it.” As parents, we were eager to find out why those seizures had happened to our son and we needed reassurance that our son was going to be alright. The seizures gave us a reason to sleep with one eye open each night, terrified that a seizure would come unexpectedly.
Eight years later, on December 15th, 2012, Justin woke up in the middle of the night extremely disoriented, and my husband felt that something was not right. A few minutes later, Justin began to have another seizure, one of the worst he’s ever had. He seized for about five minutes and lost consciousness for about fifteen minutes. We needed help immediately and couldn’t bear to experience another nerve-wrecking fright like we had in the past. We finally found a neurologist who was kind and caring and made Justin her top priority. One month later Justin was diagnosed with Idiopathic Epilepsy, or Grand mal seizures.
During the first few months on his medication Justin had minor issues adjusting to the medicine, such as feeling sleepy and occasional crankiness—minor side effects we knew he’d overcome. I’m delighted to say that Justin has been seizure-free for ten months, and we couldn’t be more relieved. The medication has done wonders for our son. Justin has been doing so well in school and lives a happy and normal life just like any ten year old should. He is well aware of his daily routine, taking his medication twice a day to prevent seizures from coming unexpectedly. My son’s story has proven to us that having epilepsy is a serious disorder, but if treated properly children and adults can live normal and happy lives.