The stage was set for a perfect Valentine’s Day. Walking into my boyfriend Ben’s house, I saw flowers and gifts beautifully displayed on the entryway table. Butterflies fluttered in my stomach and I smiled to myself. I didn’t know yet that this evening of love would bring me down, literally.
For Ben, I’d planned a scavenger hunt around his house to lead him to his presents (a glittery homemade card and a book about vegetable gardening). While he walked around the house, settling in after a long day’s work – I stealthily snuck around hiding the scavenger hunt clues in their planned spots. I shoved the first clue in my pocket, thinking, “This will be fun!”
When it came time to exchange presents – Ben brought his gifts in from the entryway and we sat down together on the couch. I opened his gifts slowly – savoring the moment.
Then, it was my turn to give. I reached in my pocket and felt the small piece of paper – his “first clue” crumpling between my fingertips. It occurred to me that Ben would be confused and think “this tiny piece of paper is my Valentine?” This struck me as funny and ironic. I was clever to trick him. He wouldn’t be expecting a scavenger hunt!
I pulled the paper out of my pocket but my arm didn’t make it across my body before giving out on me. Excitement and anticipation got the best of me and cataplexy set in. My arm lay limp against my body, unable to move. My fingers relaxed, the clue gently falling into my lap. My eyes fluttered and closed. My jaw muscles slackened; I could not speak. My neck muscles gave out as well, so my head fell back against the couch cushion.
Ben is very attuned to my cataplexy and quickly recognized what was happening. After a prolonged moment of silence, my jaw muscles returned briefly and I rushed to say, “Here’s your Valentine. Read it.” before more cataplexy set in.
Still unable to lift my own arm, Ben reached out to take the paper from my lap. He read the first clue out loud and laughed. The feelings of fun and happiness were hard for me to avoid, leaving me fighting the muscle paralysis of cataplexy.
“Do you want me to wait a bit?” He asked, concerned about my cataplexy.
My muscle tone was coming and going. When able to speak, I replied, “No. Start!” I was so excited for him to begin the hunt.
“Are you sure?”
“Yeah, I’ll just stay here. Bring clues in here to read.” I wanted to go along to watch him looking for clues, but there was no way I could leave the couch (because I was struggling to maintain my muscle tones against my feelings of fun and excitement).
So he dashed off to find clue #2 and brought it back in the living room. He found it quickly! Before long, he had Clue #3 in hand.
As Ben read clue #3, another wave of happiness and cataplexy came. I slumped to a laying down position on the couch so my head would be better supported. My body lay like dead weight.
When I gained back some control, I started crying, frustrated by the uncomfortable loss of muscle tone.
“Why don’t I take a break?” Ben said, upset to see me cry. “Lets watch TV or something until your cataplexy passes.”
I shook my head no. I was so excited for him to finish the hunt and find his presents that I couldn’t wait. Even though cataplexy was getting the best of my body – I refused to stop our Valentine’s evening.
So Ben continued on, finding the clues and eventually his gifts! He brought them into the living room so I could watch him open them. By now, my cataplexy did pass completely so I was able to sit up and talk normally (something I would usually take for granted, but now I felt very lucky to have my body under my control again).
Cataplexy, a symptom unique to narcolepsy, is a loss of muscle tone usually brought on by emotions such as humor, annoyance, anger or surprise. For me – my biggest triggering emotion is when I think my own joke is funny – like this scavenger hunt.
The loss of muscle tone with cataplexy can range from a slight buckling of the knees or slackening of the neck to full body collapse. This prolonged episode – drawn out by each time Ben read another clue – dragged on over a minute, making my Valentine’s Day cataplexy attack one of the longest I’ve ever had.
Why is this happening? In people with narcolepsy, the wake/sleep/dream cycle is confused and aspects of REM (dream) sleep – take place at inappropriate times. When a normal person enters REM sleep – thoughts and emotions run through the brain and the body paralyzes itself so that it won’t act out these thoughts and emotions (the basis of our dreams).
During Ben’s scavenger hunt, I felt emotions of happiness, excitement and humor – but my brain misinterpreted these, thinking I was entering dream sleep – and paralyzed my body accordingly. Cataplexy is the same muscle paralysis of dream sleep – inappropriately taking place while I am fully awake and conscious.
So I guess you could say it was a dreamy Valentine’s Day. Perhaps a little too dreamy, but dreamy none-the-less. Thanks to Ben for his support and understanding.