In the Flowery Branch home of Janel McDaniel, a piece of artwork hangs prominently on the wall that reads: “Aspire to inspire before you expire.”
The 36-year-old wife and mother of three was diagnosed with epilepsy five years ago, and it has changed her life dramatically since. And she holds out hope an upcoming operation will help ease her condition.
McDaniel’s goal, especially this month during Epilepsy Awareness Month, is to educate others and raise awareness of epilepsy.
“This is something no mom should have to go through,” McDaniel said. “It was July 2012, I was 31 years old and I was in Houston traveling for work. I did medical auditing and loved it. I remember starting to step in the shower when I got really dizzy, and I knew something was going on. I don’t know how long I was out before they found me. That was my very first seizure. No rhyme or reason.”
McDaniel said she is not able to drive anymore, take baths alone or cook with knives due to the potential of a seizure.
“Everything was gone all of the sudden, ripped out from underneath me,” she said. “I have to depend on everyone else. Every day’s a different struggle.”
After years of logging what happened before and after each seizure, McDaniel knows several of her “triggers.”
“Fluorescent and blue lights get me every time,” McDaniel said. “I can’t watch high-definition television, I can’t look at my computer too long and if the sunlight from the window catches me wrong, I have a seizure. It is so easy to trigger me. If you give me stress, sleep deprivation and put a light in my face, I will have a seizure.”
In November 2016, McDaniel began going to Emory Hospital’s epilepsy center. By February, she was diagnosed with focal cortical dysplasia in her right parietal lobe, a condition she was born with.
“It is rough. I just quit working in July because my seizures have worsened,” she said. “I will have between two to six seizures a day. A couple weeks ago, I had nine in a week.”
McDaniel said she has become a “hermit crab,” staying at home because of how she is treated when she seizes. She recalled the last time she went out Oct. 31.
“People have made me feel like such a freak. It the first time I had been out of the house in forever,” she said. “I felt great when I walked out of the house. The way that the fluorescent light caught me, I felt a seizure coming on and then I was down.
“People don’t realize that a lot of the seizures, we can hear you. I heard one girl Facetiming, showing her friend what I was doing. I have had people taking pictures. I could hear people say, ‘Let’s get closer, I want to see what is going on and what it really looks like.’ I am not a show.”
She said though the store did the right thing, creating a barrier around her and allowing her husband to care for her, people still think you are “supposed to stick something in our mouth” and “roll us on our side.
“You are not supposed to touch us because you could injure us worse,” McDaniel said. “Because our brain is still trying to fire correctly after a seizure, we often can’t speak 10 to 15 minutes after. We also need reassurance that someone is there. We can’t change what is happening to us, but you have no idea how reassuring it is to know that you are not alone.”
McDaniel said her head goes all the way to the left and up, and “I feel like I can’t breathe. In my head I am screaming for help because I can’t see anybody.
“It hurts. It feels like someone has laid you down and started kicking you,” McDaniel said. “I know it is a lack of education for people. I understand it freaks you out, but how do you think it makes me feel? I have this monster in my head and I can’t control it. People need to understand it scares the person or the parents of the child, a lot worse than it scares you.”
McDaniel said seizures are scary for everyone and that it is “life-altering.”
“I used to have drop seizures when my daughter was 5, my middle autistic child was 6 and then my oldest was 13. We knew we had to develop a protocol,” McDaniel said. “They needed to go to their rooms or run outside when they see it happen. We reassured them not to worry about me and to call Daddy. If I didn’t respond to them within five to 10 minutes, they were to call 911. You don’t want them to come in and have to see something like that.”
McDaniel said her children feel as though they have to be her caretaker.
“I feel the worst guilt because I feel like I have taken my kids childhood away from them,” she said. “I realize it’s not my fault to a certain degree. They feel like they have to be adults. This is a lot of stress on a family. The suicide and divorce rates are so high. I have been through the feelings of anger, asking, ‘What did I do to deserve this,’ and not understanding why this is happening even after you get the answer you have been searching for.”
McDaniel will have her first brain surgery Dec. 22 to help correct what is causing the seizures.
“Everybody takes life for granted. Everyone is so busy in life. I did not sign up for this. I didn’t want this at 36 years old; it can happen to anybody,” McDaniel said.
“Human decency is all it takes. If I see you on the floor, the first thing I am going to do is try to help you. If someone offers better assistance or you don’t need, I will go about my business.”
McDaniel said she wants people to “listen, educate and look.
“I am going to continue to try to help people understand and answer questions people have,” McDaniel said. “If I have touched one person, I have done my job.”