From Underwater: When Encephalitis, Brain Injury and Epilepsy Change Everything.
Imagine life with epilepsy. Consider yourself among us—one of the statistics. Though each person living with epilepsy is different, select a seizure type, choose a cause, pick a particular damage in your brain.
Stare at the server as you sit at your favorite restaurant—with music playing and the smell already tasting delicious—while you can’t locate the words in your brain to voice your order. She waits. You search. Friends at the table stare. How do you feel?
Sit in your normal chair for the business meeting with your corporate team. You know the drill. It’s your turn. This is your area of expertise; you own it. But this time the words aren’t as clear. You slightly stutter, staring at the computer screen. Your hands twitch. Your eyes blink. You begin to sweat. The team waits for your response. How do you feel?
Stand in front of the crowd to perform your favorite solo. You’ve embraced the scene for a decade. The band plays; you get ready to change the audience’s mood with your voice. But the first lines don’t flow. You’re dizzy. You’re not sure if this is real or a dream. The last thing you remember is looking away from the flickering light—its glare was so bright. Soon you’re being picked up from the floor and taken to an ambulance. You thought the seizures were gone. Now it seems like the life you love is gone. How do you feel?
Walk around the house. You live alone. Neighbors speak. They’ll come by if you call. But no family nearby. No true friends. You wish someone else knew how many seizures you’ve had the last month. You wish someone was there to remind you what your doctor said in your previous appointment. But you just look out the widow, watching how others appear to be “living life.” How do you feel?
Imagine having a seizure during class in middle school. Puberty. Competition for popularity. Body and emotions and beauty and friends. And now this. How does that define your teenage identity?
Imagine preparing a year for a vacation. You’ve always desired to visit Ireland. Your family heritage seems to have invited you there. You’ve saved the money and finalized your flights. But the seizures return. More severe than normal. The doctors and your family are concerned. Your trip is cancelled. You’ll be enjoying an MRI and an EEG instead of music and food in a place of your dreams.
I’ve asked you to image because those are some of our encounters. Those are our adventures at sea. Underwater, we aren’t sure if we’ll remember your name or our most recent conversation or you. We aren’t certain how long we’ll remain seizure-free—if we’re fortunate enough to be one of those. We aren’t sure if our anti-epileptic medication will work well—or what the side effects might be. We aren’t sure how to pay for next month’s medication. We aren’t sure when the energy will return, if ever. We aren’t sure.
That’s us, so often.
We just aren’t sure.
A therapist can help. They will listen to your description of sinking deep. They will ask questions. They will assist you in no longer denying your life underwater. They will comfort you amid the current. They will also help you—often slowly, and after drifts and strong waves—come ashore.
When encephalitis shoved me underwater, I was slow in seeking therapy. My speech therapy helped, but eventually I needed more. I needed help to gain a better view toward life, toward the present and the past and the future.
What is the list of realities of your ocean? What are you doing to face them and to pursue recovery? Who is helping rescue you?
Though much of each life struggle is a journey underwater alone, please do not always swim alone. Please, seek rescue. Please, do not suppose you will always stumble on the shore alone.
Notice the lighthouse. Hear the ship. Detect a swimmer coming to your aid.
Make the call.
Great perspective, Chris. I hope people with epilepsy take your sage advice to heart.
This was so good. I can’t imagine living with such a condition. Pastor Chris I love how you haven’t let epilepsy ruin you. You continue to push through and be who God has called you to be no matter what. Your perserverance is admirable and God surely blesses you for it. You live to tell this story as your testimony to impact many. I have sure been impacted by you. Thank you Pastor Chris
I love the hope found in all of your blogs, Pastor Chris. This really encourages me to seek help and actually talk about my struggles, and to be okay with not being okay sometimes. We are not meant to walk this journey alone. Having people in our lives who we can talk to will only build our strength and encourage us to keep going. When we think we are alone, that is where we can get into trouble. That is when those suicidal thoughts come in and try to destroy us. But, with people, we do not have to lean on ourselves because there are people and resources and a God who is more than willing to help us through the difficult points of life and even the good times.
This is amazing Pastor Chris! I love how you describe dealing with a chronic condition. I too have health problems that invade the simple happenings of my daily life. It can be so hard to stifle the anxieties of wondering if something will happen, but that you can not let it control your life!
This blog post touched my heart way differently this morning. I sat here and read this post having to hold back tears because it was so real. There is so many people going through so much; this can be from health problems to things emotionally, but each person is walking through something and majority of the time we do not even know. For the person going through something, reach out for help and do not do it alone. For the others, be the person that they can reach out to. For we do not know how long just a smile towards someone can go. It is up to us to love and live like Jesus. We are called to live in community and not do life alone. We must rejoice when others rejoice and mourn when others mourn! Let’s be a community that comes together! Pastor Chris, I loved this!!
This post reminds me that we are not alone. God is with us, Christ is with us, and the Holy Spirit is with us. Pastor Chris you have been such a gentle spirit to be around you. You are such a good example of what it means to share the love of Jesus Christ. Despite the things you deal with and the things you try to help others with you still do it and I’m sure that God has a wonderful reward waiting for you in glory.
It’s truly impressive and awe inspiring how faithful you are and how much you live your life out for the Lord and the things you do with this condition. Just being around you both in the classroom and at church it’s easy to see how many people’s lives you have touched. And I see through this blog how you manage to walk both sides of the line of being there to help people and being ready to call for help. You are truly one of the most faithful people I’ve ever known and an absolutely massive inspiration and role model this semester. thank you.
I was present for a family member’s first big seizure, she had previously only had absent seizures but this time it was different. It was the first time I had ever seen a seizure in person. We were all unsure for whats to come, why this happened, when and if it will happen again. But as unsure and scary as it was, it was also encouraging. She was and is still very optimistic about her condition, she doesn’t let it drag her down she’s always the happiest and brightest in the room despite what she’s gone through. Being there for her so shes not alone is our main goal as a family. None of us are alone in this life. Thanks for posting this Pastor Chris.
I myself never had to deal with having a seizure. The first time I ever witnessed a seizure was when I was 10 years old in church. A younger man had a seizure on the row behind where my family was sitting. It scared me at that time. I wished I had a better understanding then but I didn’t. Now I know more about seizures. I admire the people that deal with this in their daily lives.
I can’t imagine dealing with these issues. I have a great deal of respect for the people that do. We take too much for granted in our lives. Thank God if you have good health it could change at any moment.
I’ve walked through seizures and the uncertainty of that with my mom for many years. I’ve seen the fear and confusion and the desire to feel “normal”. I also deal with health issues that cause me to have to be extra cautious and to chronically wonder when it will affect me next. What I’ve learned from these two things is that they are so much less scary when you are not alone. Community makes us stronger, even when we are at our weakest.
This post was very touching and helped to put into perspective such a struggle with epilepsy. I can’t imagine going through something like this. I can’t imagine feeling helpless and feeling like I couldn’t live my life to the fullest because of such a condition. However, even though many people struggle with this condition, they know how to take life for what it is worth. They learn how to live like there is no tomorrow. They know what it is like to see the end of their own life, but the ones who don’t struggle health-wise tend to take life for granted and see no value in life. What a coincidence this is. The ones who wrestle with health issues are the ones who see the most value in their life than the one who lives healthy but takes it for granted.
This post challenged me. I know we’re all saying that we can’t understand – but it’s true. It literally does not click with me the difficulties of a life like this. I physically and emotionally have not the slightest clue as to what this actually entails. This has got to be devestating on one’s emotional state. I thought my own anxiety was rough – it doesn’t even touch this. Pastor Chris, you are an example to me. I cannot see how you maintain the outlook on life you have – Christ is powerful in you!