I am one of the nearly 3 million Americans who has been diagnosed with epilepsy. One in 26 Americanswill be diagnosed with epilepsy. Some of them will be diagnosed as a baby, toddler or child. For me, it was when I was 23. Most of the causes of epilepsy are unknown. For me, there are several theories, but nothing can be certain. When I started to have seizures, I sat down and did a lot of research, I went to multiple specialists, and I asked questions. There are so many things the doctors could not answer, and many things I was not prepared for.
This journey has been a struggle for me, but it isn’t going to take over my life. This is my story.
I had my first seizure after Christmas break. I am a teacher at a small private school. I was standing at the door greeting students when everything started to spin, I became nauseous, and I felt like I was inside a washing machine. The next thing I remember was a group of people staring at me. I was lying on the ground, and paramedics were rushing to my side. I was struggling to make words, I couldn’t remember where I was, and I had such an urge to throw up. My mom came to the school and talked with me. I have had fainting spells since I was very young. This was nothing new! She went on her way, and I returned to teach my class.
It was just a fainting spell because I didn’t eat breakfast. Except… it happened over Christmas break. It happened the summer before. It happened when I was alone. I would wake up in pools of vomit, I would wet my pants, I would forget how to talk, I would forget who people are. I was losing control of my left arm. I was having such bad headaches. I was in pain. I was losing my memory, my ability to speak, and I thought it was time to question if these were “just fainting spells.”
I went to the doctor that week. I told him everything that was going on. I was having seizures every day. He finally listened and thought we should pursue this, just in case. He decided that, yes, these were not “fainting spells,” and maybe I have been having seizures since I was young. My mom had seizures as a kid. My brother had seizures. My cousin has epilepsy. We went through my family history; maybe there is more going on in my brain. In that week, I was sent all across the metro area seeing doctors and getting scans. I was sent to get an MRI the next day. I got a phone call about a spot on my brain. I had an appointment with a neurologist. I was having seizures. Having two or more unprovoked seizures is considered epilepsy. My neurologist called it a seizure disorder. This began my journey. There were so many things I was not prepared for.
I wasn’t prepared to be sent place to place to get scans, tests and opinions. I had MRIs, blood tests, EEGs, tests for diabetes, tests for anything you can think of. My MRI with the spot on the brain ended up being nothing. My glucose levels were fine. I did not have a heart condition. My lungs were working just fine. I was not prepared to go from place to place to be poked, prodded, hooked up to machines and told so many big words. When you go to the doctor, you tell them your symptoms, they swab your throat or nose or examine you, and they diagnose you. I didn’t realize epilepsy would take so many tests.
I wasn’t prepared to see so many doctors. I was sent from my primary doctor, to a radiologist, to a neurologist, to an EEG tech, to another neurologist, to a specialist in epilepsy, to a specialist in headaches, back to a neurologist, and then back to my first neurologist. I had seen so many doctors. Why couldn’t I stay in the care of one of them? I was not prepared to tell my story over and over and over again. I was not prepared for the nurses who would ignore my requests. I was not prepared for the doctors who seemed to try to catch me in a lie. I was not prepared for the “best hospital in the world” to question if my seizures were real. I was not prepared for a group of doctors to skip through my medical file and focus on only one sentence: divorced; abuse.
I wasn’t prepared for the doctors to dig so deep into my life. Am I right-handed or left-handed? Did I finish college? What is my occupation? Where do I work? Did my parents go to college? Do I take ibuprofen? When was the last time I took it? What is my living situation? Oh, I’m divorced? But I’m only 23. Why are you divorced? Explain the abuse. Explain everything about your family. Walk out in the hall for me so I can watch you walk. Hmm… your left arm shakes a lot. You don’t have a lot of feeling in your left arm. Your coordination is off. I wasn’t prepared to tell every single doctor about my past abuse, the story of my brother being born at 24 weeks and my depression.
I wasn’t prepared to have a set of doctors, nurses and a person in my life who believed I was faking it. I wasn’t prepared to be my own advocate. I wasn’t prepared to fight with everything I had left so my medication would change. I wasn’t prepared to put my foot down to a doctor and say, “No. You’re wrong. I know my own body and you are wrong. This isn’t just a cause from birth control or headaches. There is something else wrong with me.” I wasn’t prepared for this person in my life to tell my family, his friends, his family and the doctors that I was faking it. He wouldn’t let me speak at the appointments. He wouldn’t let me have control of my health plan. I wasn’t prepared to spend hours in a hospital and be all alone.
I wasn’t prepared to lose my license for over six months. I wasn’t prepared to hear that I couldn’t take a bath, I couldn’t live on my own, I couldn’t sleep alone. I could never live alone.
I wasn’t prepared for my depression and anxiety to spike. I felt like a child. I was in fear of when my next seizure would happen. When I would have a seizure, I would pee my pants. I would throw up on people. People would look at me funny. My anxiety was worse than ever. How would I pay for these doctor bills? How would I walk to my job without having a seizure? Did I take my medicine yet? What if I have a seizure in the shower? My depression hit an all-time low. Was it because I had to retell my past over and over? Was it because I had to move home again? Was it because I felt like I was doing this alone? Everyone gave me their opinion. One of my friends wouldn’t believe me and told me about all of the health care professionals she talked to. I know my own body better than anyone else, but yet they wouldn’t listen. I had so many people giving me their opinion, shoving their opinion down my throat when I was just trying to get through the day without a seizure. I was sad and alone. I was telling my story over and over again. About people in my life who didn’t treat me right or who didn’t believe me. I was going to live with my parents forever. I was “different.” Was my depression because of my epilepsy? No. I have been depressed since middle school. So many memories came back. I wasn’t prepared to struggle with being seizure-free and fight my depression.
I wasn’t prepared to struggle. I also wasn’t prepared to have such a loving family be there every step of the way. Even if they didn’t always know exactly what to say or do, they were always in my corner. They got me to my monthly appointments. They helped me clean up after I would throw up. They would keep me safe. I wasn’t prepared to find a boyfriend who would stand by my side and not judge me. He believed everything I said. He understood the depression. He helped pick me up when the dark was all I could see. I wasn’t prepared to have a village of people truly mean it when they told me they would help me out with anything I needed.
I am going to take medication my whole life. I will worry about having a child when I have epilepsy. I will need to be medicated if I am ever pregnant. But that is OK. I have a neurologist now who cares for me. I have a doctor who listens and takes my word for things. I have a wonderful doctor who is there every step of the way, and I can trust him. I have a family that will help me. I have a great boyfriend who will ditch our plans so I can recover for a seizure. When I have a seizure, it wipes me out. Maybe for a day. Maybe a week. My body hurts. My head hurts. I can’t think. But my boyfriend is OK with that. He stays with me, even if he has something else planned. I have a great support system. I know I am not doing this alone.
I have epilepsy. I am going to struggle. Every day I learn something new about my own diagnosis. Every person with epilepsy has their own story, struggles and limitations. I know I cannot have too much caffeine, I need lots of sleep and I need to be healthy. Each person with this disorder will have a difference experience and feel differently about it. This isn’t a “one size fits all” thing. There are different kinds of seizures. There are different kinds of drug interactions.