Feeling Like a Danger Because of My Narcolepsy
Licking an envelope and pressing firmly on the seal to send out before the mailman came, I felt the grinding in my stomach notifying me it was time for lunch. I made my way to the freezer, pulled open the drawer and was face to face with the best thing I had seen all day: waffle cut french fries. Reaching straight for the bag, I grabbed the fryer, turned the knob to “on” and waited for the sizzling of oil to fill my ears as the delicious smell filled my nose…
I gasped violently for air as my lungs filled with the dense smoke that prevented my eyes from seeing anything going on around me. I did not remember going to sleep, yet here I was being woken up. Sliding my feet across the cold floors, I realized I could not feel the wall I knew I was leaning on for support. Cataplexy left my hands paralyzed at the moment I needed them most.
Maneuvering through the house, I struggled to remember what I had been doing. I thought I was on the couch before I feel asleep, but oftentimes my sleep attack black outs leave me unaware of my location and prior engagements. As the fryer became visible, I felt my stomach turn. I noticed the grease was not on fire yet, but mere moments could quickly have changed that.
My brother raced past me and took the smoldering pot out of the kitchen, through the sliding doors in the breakfast room, onto to the back deck; at the same time, his girlfriend went through the rooms fiercely throwing open the windows. Older siblings are supposed to be there when their little brother calls for help. Now, everyone had to always be prepared to come and rescue me, without even the warning of a call for help.
No one ever made me feel like I was to blame, and comments like “you could not have done anything about it” and “you cannot help it, it is out of your control” filled my ears all night. But I know it was my fault — if I were not here, it would not have happened. I try to tell myself what everyone else tells me, but I can’t. Instead, as I go to sleep, my mind swarms with thoughts and images of what a few more minutes of that grease on the heat could have resulted in. I am more of a danger than a protector and have a hard time fathoming that, as an incurable disorder, narcolepsy will continue to restrict my life for as long as it spans.
But as my life continues to span, I can only get stronger.