Friday, February 5, 2010

The spoon theory

I read The Spoon Theory a few years ago, it makes sense, but I also didn't want to accept that my life at that time was an exercise in spoon theory and not one where I was making good decisions about what to use my spoons on.

Does anyone really live life with an infinite supply of spoons? Maybe they do, but the last time I felt like that must have been as a teenager. There have been periods of time since then where I've had a lot of spoons. The past couple of months it seems like I've deteriorated pretty quickly into very few spoons, so few that I've not really had any spare until the past week or so to actually think about where and when they went missing, it seems to me that swine flu was a major contributer, exhaustion and fatigue seem to have been out of control since then, particularly as sleep no longer seems to refresh.

Pain is up and down, my hip had a very unhappy January, but other than the 1st, February seems to be better and right now fatigue is massively more restricting than pain or stiffness, which I think just indicates quite how big a problem fatigue has become, considering that even very basic things like holding a cup of tea are painful.

I loved this comment from the spoon theory page, not just that some people have tablespoons and others have ladles, but that those of us that have tablespoons get grief for our best not being good enough. The whole thing is so hard to explain that I feel like few if any people understand my life in a world of smaller or reduced spoons and it doesn't help that I feel embarassed to say it. My depression will heal and I hope and pray that there will be times when the spoons are less limited. Narcolepsy is like Parkinson's, it gets worse, most sources say there are about 40 years of deterioration before some kind of stability. EDS just is, but there will probably be more unusual injuries and rehabs along with joint replacements, but what won't change is how many basic tasks take many times the usual amount of energy because my muscles don't just have to do the task, but also have to guard all the joints potentially displaced by the process. I just picked Grace up, not a big deal on the major muscle groups, she's only 15lb, but that was 15lb that also needed to be prevented from bending my fingers and wrists back to the point of pain or dropping her. Anyway, here's that quote...

When I saw the title Spoon Theory, I thought of an exercise from when I was training to be a volunteer counselor for survivors of sexual violence. The group of trainees was divided into two teams. Each team got a utensil and as many beans as they wanted. The idea was a relay to see who could get the most beans into a bucket at the other side of the room. The other team got a ladle, I got a tablespoon. Then as I'm trying to balance as many dried beans as possible on a tablespoon the trainer starts telling me what a bad job I'm doing compared to the woman with the ladle. But she does not acknowledge that I've got a spoon and the other team has a ladle.

This was an important moment for me because it felt exactly how many people treated me after I developed severe migraines and eventually an unrelated mental illness. When I spoke about this after the exercise the trainer told me this is what oppression feels like.

I love your spoon theory because it gets to the heart of what a disability requires, and I love my spoon story because it shows what it feels like to live in a world that often does not acknowledge our effort.

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