A personal story for Epilepsy Awareness Month

By Luana Garrison

Patient Service Representative
General Internal Medicine
Loma Linda University Health

The month of November represents a time to give thanks as well as the start of the holiday season. It is also Epilepsy Awareness Month. As the mother of a son with epilepsy, November is my time to work overtime on Breaking the Silence of Epilepsy through education and talking about it. 

Epilepsy is a neurological disorder in which the brain cells (Neurons) misfire, resulting in a person having seizures. More common than most people realize, roughly 3.4 million people are diagnosed with epilepsy in the United States. Yet there is still stigma and a lack of knowledge and understanding about this complex disorder. 

I was one of those people that did not understand what epilepsy was. I believed all seizures were convulsive and all people with epilepsy were developmentally delayed. I later found out how wrong I was.

Twenty-eight years ago, I gave birth to my one and only child, a baby boy named Christopher. After a pretty typical start, things quickly changed. When Chris was six months old, I noticed strange movements that caused him to raise his hands over his head while at the same time, his face looked like he was in pain. He would do this several times a day. His pediatrician said Christopher seemed fine. Finally, when Chris was eight months old, I took him to his pediatrician, and he could see it for himself. Finally confirming a diagnosis of epilepsy, the pediatrician said Chris was also developmentally delayed and would never walk or talk. The doctor also told me he probably would not live to see age 5. This news was all too much for me to comprehend. But there was more. I was told to put him in a “home” and forget about him. 

That moment was the start of our journey, which sometimes felt more like riding a roller coaster. It has been filled with ups and downs, unexpected turns, and that slow climb to the top. However, this experience has brought me closer to God and taught me how to rely on Him and not myself. 

After Christopher’s diagnosis, I felt so much sadness and sympathy for him. Chris had as many as 100 seizures in a day at his worst. We tried various medications, but each had side effects that caused him to be lethargic or sleep all day. I had no idea what the future held for him or how I would navigate raising him. However, I knew I could not stay in this place of negative emotions. 

I began reading and attending conferences to educate myself about epilepsy and committed to giving my son the best life possible. We finally found the proper medications to control his seizures and give him the best quality of life. But we still had to deal with the sting of rejection. It came from schools as well as family members. So this was the start of my advocating and educating people about epilepsy. 

As time passed, I realized that my local community did not offer any services specifically for those with epilepsy. I found the courage to start a nonprofit organization, a genuine commitment, and a calling in both of our lives. Through this organization, there were conferences, a weekend camp named after my son, support groups, and a lot of outreach efforts. Chris became bold and confident, sharing his story with others. He has never been ashamed to say he has epilepsy because he knows epilepsy does not define him. 

Many years ago, I began teaching him Philippians 4:13 “I can do all things through Christ who strengthens me.” He is now walking in it. So many times, when I look at Christopher, I am in awe of the miracle of God. The only words that can come out of my mouth are, “I am so thankful that God chose me to be your mom.” 

It is a blessing that God turned something that, at one time, caused me to feel helpless into a testimony that brings hope and joy to others. 

There is still much more education, advocacy, and acceptance needed for those with epilepsy to be understood. You can help by wearing purple in November (Epilepsy Awareness Month). Together we can Break the Silence of Epilepsy.