Chris Maxwell served 19 years as lead pastor in Orlando, Florida, after five years of youth ministry. He’s now in his thirteenth year as Campus Pastor and Director of Spiritual Life at Emmanuel College. He speaks in churches, conventions, and schools, and is the author of nine books, including “Pause with Jesus,” “Underwater,” and his latest, “A Slow and Sudden God: 40 Years of Wonder.” Visit him at www.chrismaxwell.me
When did your journey with epilepsy begin?
I became very sick in March 1996. The doctors struggled to find the cause. I was placed in ICU at Florida Hospital East in Orlando, FL. They finally determined I was suffering from encephalitis, and they did not know if I would live. When they determined I would live, the did not know if I would ever be able to speak again. That is what I did for a living. I was speaking and writing as a pastor and author.
Thankfully, I did live. The results are several brain damages in my left temporal lobe, difficulty with memory, and living life with epilepsy.
What has it been like living as an adult with intractable epilepsy?
It has not been easy. I am fortunate to have a wonderful family and friends who have been there to encourage me. I am fortunate to believe in a Creator who loves me and listens to my prayers when I am grieving the loss of the former me. I am fortunate this happened in a place where great doctors were available to help me. Many of my friends who live with epilepsy do not have the support group I have.
But it is still difficult. As I wrote in my book Underwater, we often feel lost at sea and unsure how to come ashore. Our brains work so hard to remember, to find peace, to stay seizure free.
What do you want people to know most about living with epilepsy/seizures based on your own experiences?
Some of the “hidden disabilities” might not always be noticeable but we struggle deeply. Our pain hurts. We often feel alone and isolated.
I ask people to never tell us they “know exactly how we feel.” No, they don’t. Every situation is different. Just because someone else forgets names because of age or normal forgetfulness, that isn’t the same. Our memories can be changed because of our conditions.
Be sure your buildings are safe for people who are sensitive to flashing lights or bright lights. Be sure you know what to do if someone in your office or school or church has a seizure. I want people to know about epilepsy.
For those that apply a stigma to epilepsy what would you tell them if you could to erase their perception?
I live with epilepsy, but I also live with many normal activity’s others enjoy. I write books and tell stories. I enjoy music and ball games. Yes, I might be sensitive to bright lights and sunshine, but please welcome me and my sunglasses. Welcome me and my forgetfulness. Read my books to understand us better. Ask us questions. Don’t avoid the subject. Let’s talk about it.
I’ve spoken in conventions in countries where people refuse to mention they live with epilepsy. It is seen as a curse.
I want us to change that perspective. So, please, let’s study and learn and discuss this topic. And, thought we might cry occasionally, sometimes we can even smile and laugh as we talk about it.
What compelled you to share your personal story and write books?
Writing is therapy for me. Writing helps me release my feelings rather than holding them in.
When I wrote the books Changing My Mind and Underwater about my illness, and when I have written stories and poems in my others books about life with epilepsy, I write thinking this: What do I wish my family and I could have learned from when I became sick. We did not know about encephalitis or epilepsy or brain damage. I hope the books invite others into this new life, while giving them hope in the middle of the storms.
What is your favorite activity to do apart from writing?
I love balls games, music, reading, and time with family and friends. I love praying and noticing the beauty of creation all around us.
What would you like people to know about Chris Maxwell?
I have a wonderful family. My wife Debbie, our sons (Taylor, Aaron, Graham) and their wives and children are so great. I cannot be thankful enough for them.
I would also love for people to read my books to see if maybe a few stories or poems would encourage them. All my books are on Amazon and my website is http://www.chrismaxwell.me/If anyone wants to invite me to speak in their area, please contact me.
What is your inspiration?
I keep thinking about being loved by a Creator who knows everything about me. I keep thinking about a passage of Scripture when Paul, the writer, saw God’s strength being made perfect in his weakness. That helps me know my struggle is not the end of the story. It is just one part. There is so much more to the story. And when I give hope to other people through my story, I am really inspired to continue writing and telling my stories.