Exactly a week ago today, I got a link from my dear friend Sarah on which she wanted my opinion. “I was just wondering if this was an accurate description of these sorts of things.” The link in question was to the Spoon Theory, a way that author Christine Miserandino developed to explain life with illness and/or disability. The entire post is worth a read, but the gist is that people who live with illness and/or disability only have a certain amount of “spoons” every day, the number of which varies, and every action that they undertake costs “spoons.”
The idea floored me. It is such a simple and powerful way of explaining what it is like to live with an illness that dictates how you can live your life. I was thinking about that all of last weekend, even in the middle of our revelry through Mall of America, and I actually ended up telling Megan and Crystal about the way life is with “spoons”–especially on rough days.
Later that same day, I found myself sitting in front of the Barbie DreamHouse Experience at MoA with Megan as we waited for Crystal who was off buying something. We were stopped at a bench because my knee was killing me, and I ended up letting the tears I had been holding for hours fall. I wept for the childhood I wish I’d had, for the little sister that I miss, for the family that I long to have… for the person I wish I was. Wiping my tears on the scarf I was wearing, I remember turning to Megan and apologizing profusely, saying that it was her day and I needed to keep it together and I wanted to give her all of my “spoons” so she would have a wonderful birthday.
I can still hear her tearful laugh as she told me that we’d already driven up to Minnesota to see her, that she didn’t need any “spoons,” that she wish she could give me some. For a short, beautiful moment, the reality of my struggle became tangible and Megan and I were on the same wavelength, completely understanding of the cost of social interaction when you’re devoting most of your energy to interacting with the ugly voice inside your head that is setting limits and requesting attention.
A few more days later, I am still thinking about that conversation. The fact of the matter is that I have found myself constantly running out of “spoons” for the past seven weeks. It has been one thing after another after another, and I am running out of ways to keep myself in check. I am drowning in things to do and I keep rolling over the to-do list but I am losing my will to do things–letting the chips fall where they may is becoming quite the attractive response, except I know I cannot afford to do that. So what to do, then? How to tackle things?
I’m not sure–it seems I can’t be sure of anything these days. I seem to have saved my only “good” days over the past few weeks to the days where I see my therapist, so that the bad days are so remote that it is difficult to recount them. But days like today, the struggle is vivid and I wonder how I didn’t feel this on Monday when I was sitting on her chair.