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Traveling with Epilepsy: A Sleepover

Traveling with Epilepsy: A sleepover
Photo: flickr/Tim RT

The hot pavement must have been what brought me back into reality. I was walking in the middle of the road and the black asphalt had become unbearable. I quickened my pace, skipping in efforts to alleviate the pain and suddenly realized the situation. I had no idea where I was. I had no idea where I was coming from, or where I was going. I was afraid, running away, and my bare feet were starting to blister.

I felt as if I were in a nightmare, a lucid dream, or perhaps belligerent. Everything around me was blurry but slowly it cleared and I saw that there were green lawns and wide sidewalks to save my feet. “So why was I in the middle of the road?” I thought

Awareness slowly returns

I lumbered to the safety of the white sidewalk. I suspected it was early morning as I stumbled past a couple drinking coffee on their front porch. They gave me a disapproving look, so I avoided eye contact and pretended that I knew where I was going, what I was doing, who I was… Every house looked the same. I wandered on as I tried to connect the dots. What was happening?

I was wearing my nightgown, braless, hair uncombed and wild, and I had blood on my face. The blood on my face was from biting my tongue. I now realized that I had must have just had a seizure. It is common after a tonic clonic (grand mal) seizure for the victim to be scared, confused and act bizarre. It is also common for the victim to not know who they are, what year it is, or even recognize family. Slowly, I started to step back into reality. 

I was suddenly aware of how wildly inappropriate I looked walking down a street that only saw fit runners and dog walkers, but I had no plan to get out of this situation. I needed help. I walked by driveway after driveway, porch after porch, praying that someone would come to my rescue, but every pair of eyes I met looked at me in disgust and turned away.

A sleepover gone awry

Things were coming back to me faster and faster. I was at a sleepover at Mara’s house, my best friend. “How long had I been walking? Is her house near?” I thought. My bleeding bare feet suggested I had been walking for a long time. Now I knew that I had to get back to her house. I wandered on but it seemed no one was going to help a girl staggering around barefoot in a nightgown. I was sure this neighborhood had never seen such a thing! 

I caught a man’s eye while he was watering his lawn. “Please, please, I need to use your phone. My words were slurred as my bitten tongue had swelled. ” He turned his back to me but I walked on the grass towards him. “Please, this is an emergency!” My voice cracked and I inhaled big gulps of air while I spoke. “Please, call me a taxi. I need a taxi! Sir, help me!” He threw down his hose, marched inside and returned with a cordless phone. I heard him mumbling on the phone. “A taxi will be here in 20 minutes,” he stated without eye contact as he ducked inside never to be seen again. I suddenly felt overwhelmed with emotion. I couldn’t hold back the huge sobs that knocked me to my knees and shook my body. I sat at the edge of that perfectly manicured lawn rocking back and forth on my knees with my palms and forehead on the ground, unable to control the tears. 

I cried because I was so thankful that this was over. Now I was back to reality. Words could never describe the terror I feel in that alternate universe I visit during my seizures. I now knew where I was going and who I was. I cried because that man didn’t realize how much calling a taxi meant to me. I felt indebted to him. I cried because I was humiliated. I cried because I felt that it was unfair that I had epilepsy. And I cried because I felt alone. How could anyone ever understand how I felt?

The cab took me to Mara’s house, only 1 mile down the road. Mara raced out of her house and flung her arms around me. “You had a seizure. It was so scary! Then you stood up pushed me away and ran out the front door. You had this horrible look in your eyes that I had never seen. You didn’t even know who I was. I didn’t know what to do! You just ran!” Her voice was quivering. 

My best friend was holding back the tears as she told the story over and over. I should have felt joy for having such a concerned friend, but all I felt was guilt.  I had ruined her day and I had absolutely no control over my actions.

Taking some measure of control

It took me a long time to realize that although I had no control of epilepsy, I did have control of how I lived with it. And long ago, I had already decided to take chances, and not let fear of the unknown dictate my agenda and activities.  

What have you done to take control over how you live with your epilepsy? Share what has helped you feel more in control in the comments below.

Maureen Knorr
Follow Maureen Knorr:
I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy!