If you don’t know what I’m talking about, read The Spoon Theory by Christine Miserandino now. Seriously, stop everything and visit: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
Alex has been really supportive of my narcolepsy from day one. We quickly fell into great routines for managing my excessive sleepiness and cataplexy. Yet, my narcolepsy is so much more than the minutes I spend sleeping or paralyzed with cataplexy.
In my experience, narcolepsy is almost entirely invisible, manifesting in behavior, mood, energy and cognition. I had a hard time explaining how I simply ran out of energy at times. I reached a “wall” and needed sleep and time to myself to re-charge.
When I shared The Spoon Theory with Alex, it gave the invisible aspects of narcolepsy a voice. Christine Miserandino didn’t just write a blog post, she wrote a new language for those with chronic invisible conditions to speak to our loved ones.
Recently, Alex and I were interviewed over 24 hours for a major media piece on narcolepsy to be released in the coming weeks. At one point, Alex explained The Spoon Theory to the reporter, who hadn’t heard of it. My whole body glowed with pride and joy. And by the end of the 24 hours, the reporter was talking in spoons too.
If that’s not powerful, I don’t know what is.