I was recently searching the Internet for ways of managing this new standard that I am trying to accustom myself to, when I ran across a beautifully written story about a young woman living with Lupus.  In her story, The Spoon Theory, she illustrates her daily life to a close friend by using spoons as a metaphor for her energy (or lack thereof).  She starts each day with a finite amount of spoons.  Some days she has more, some days she has less.  Each task in her daily routine costs her a “spoon” and, at the end of the day, she usually has fewer spoons than she has tasks.

I shared this story with my husband in an attempt to help him understand what I was going through and why I was suddenly “slacking off” on my daily tasks.  He sat there for a moment before finally looking at me and saying, “I get this. It makes sense, but it’s lacking something very important.  This doesn’t show the whole picture of how what you’re going through affects the family.” “Let’s change it up,” he said.  “Pretend that instead of spoons, you start the day with a bag of quarters.  These quarters represent your  energy.  Depending on what you ate the day before and other factors, you start with a different amount of quarters each day.   And every where you turn there are ‘parking’ meters.  There’s a dishwasher meter, and a makeup meter and a work meter and a cooking meter.  Each meter costs a different amount of quarters.  A makeup meter might only cost one quarter, but a weed-the-garden meter costs 3 quarters on a normal day and 6 on a hot day.  You get it?”  “Yes,” I said, “But that’s not all that different than her story.”

“Ahhh, but this is where it changes,” he mused.  “You see, I also start the day with a bag of quarters.  And so do the kids.  And your ‘meters’ are not necessarily yours alone.  While the makeup meter is yours, we share the dishwasher, laundry, poopy diaper,  walk-the-dog meters and all the other household and financial meters.  I used to be able to count on you to put quarters in the meters.  But now, I can’t.  The dishwasher, for example, has to be unloaded in the morning, loaded after lunch, unloaded before dinner and then loaded again after dinner.  If that’s a quarter each time we touch it, then we have to spend 4 quarters a day just on the dishes.  I used to put a quarter in in the morning and you would put one in after lunch, before dinner and again after dinner.  You used to put three quarters a day in the dishwasher meter.  Now, I’m lucky if you can put one in.  Many days you have to choose between putting quarters in the laundry, cooking, work and dishwasher meters.  Obviously we need money and we have to eat, so the dishwasher and laundry meters aren’t being fed most days.”  “I know,” I agreed sadly.

“So,” he continued, “I now come home to a meter that’s expired.  If you didn’t unload the dishwasher before dinner and load it again after dinner, then when we come down to make breakfast the next day there are no dishes to eat on, no pots to cook with and ants.  That’s happened several times this year.  Now I have choices to make.  I have to pick which meters to feed.  And although I might have enough quarters to feed them, I don’t have enough time.  I have to choose between the mow-the-grass, walk-the-dogs, laundry, dishwasher, home repairs,  and relationship meters.”  “Relationship meters,” I queried? “Absolutely,” he exclaimed!  “When we have meters expiring all over the house and everyone is stressed out, you and I start bickering.  The kids see that and they get whiny.  We start bickering more because the kids are annoying us, and the whole thing starts getting out of control.  If I don’t play with the kids or eat dinner with the family to reconnect, then those meters are going to expire.  And we can’t have that.”

We stared at each other.  It was abundantly clear that this illness was affecting the whole family.  That my new standard wasn’t my standard.  It was our standard.  “What do we do,” I asked?  He didn’t know.  We didn’t know.  And while we didn’t solve the meter issue at that moment, at least we built a common language.  If I told him I was running low on quarters or that the baby’s meter was set to expire, then we could tackle the problem together.  Instead of running around alone and trying to feed meters that the other person didn’t know existed, we were in it together.  We’re building our new standard together.