Monday, August 13
The Isolation of Narcolepsy
This has been one of those weeks when I'm repeatedly reminded of just how much narcolepsy can isolate a person from the waking world.
Most people just don't get it. They watch your loved one fall asleep and judge. If your spouse isn't by your side, it's assumed that they must be asleep. They make jokes, or ignore you, or interrupt impatiently as your narcoleptic loved one searches for the right words. Sometimes, you get left out of dinners, parties, and anything else even remotely fun.
But it's not always someone else's fault.
Sometimes I decline invitations because I just don't want to deal with narcolepsy in a social setting. I don't want to nudge my husband awake, wake him when he begins to snore, or watch him worriedly as he fights to control a laugh. It can be exhausting, so at times I'd just rather stay home.
Then there are the let-downs: dates aborted because my husband is too tired to continue. Movies left unfinished... until further notice. Intimate moments become awkwardly silent. When one half of a partnership is always tired, the healthy spouse must quickly get used to the old adage, "let's play it by ear."
Much of the time, I'm okay. I have enjoyable hobbies, a few supportive friends, my volunteer work, and of course, my beloved child to fill my days with joy. But sometimes... narcolepsy leaves me lonely. Which leads me to days like today, when disappointment makes me a little weepy and I go to bed early.
Gray days are inevitable. But knowing that they can't last forever helps make it okay.