Spoon Theory

To update VERY briefly from my last, long-ago post: I did get in to see the counsellor, twice. I wrote up most of two separate posts about it, then never finished either. Basically, I ranted about how I needed my parents to be responsible for themselves so I could stop worrying about them; then I realized, over the next couple of days - rather as they have, I'm sure, forced themselves to do for me - that they *are* adults, and whatever they do is their choice. They are not asking for my help, and I have only a limited responsibility to bail them out unasked. This required a deep breath, and coming to grips with that the choices they are making right now may cut years off the time I have with them. And that this is not my responsibility. I was nearly sick afterwards, but after it settled out, that... fury I mentioned in my last post seems to have dissipated, and has not really returned.

Now that that's done, I want to talk to you about spoons. But you need to read But You Don't Look Sick first, for context, or else you'll think I've gone totally insane.


The author of this posting may have invented the best idea ever for explaining chronic illness. I was talking to one of you, my dear patient readers, a few days ago about Asperger's and how I believe I have a mild case of it; here is a much better explanation of why I hold said belief than I was able to provide before.

To synopsize from the article/blog post: 'Normal people', especially young ones, have a nearly limitless reserve of energy. (Note: I don't think I know very many of these so-called 'normal people' personally, but I know they exist because I see them in my class seminars, talking about how they stayed up all night drinking and partying and cramming.) This energy and capacity for 'getting stuff done' is symbolized as an unlimited supply of spoons.

Those in the tails of the standard normal distribution (read: not in the middle of the bell curve), however, have a finite number of spoons to spend in a day. Depending on their circumstances, they may have a fair number, or maybe only a very few.

According to the author of the posting, her friend, to whom she was explaining this (with the aid of real spoons), looked at her in a kind of horrified sadness and asked how on earth she manages to live a life of counting her spoons. Now, I may be jumping to conclusions, but I infer from this that the 'normal healthy person' 's reaction is generally going to be roughly similar to this - rather than nodding in agreement.

Well, that's okay. I already knew I wasn't a healthy, normal person. So let me explain to you the spending power of a spoon in my world.

Now, I obviously don't have lupus, unlike the author, so the situation is so incredibly different that I would never presume to know what she's going through. My body is so functional. My hair doesn't pull out by the brushful and my fingers generally bend when I tell them to. It's a blessing that I should cherish more.

I spent a fair bit of last night and this morning puzzling it out, and I think I have my answer. It is not so much physical tasks that cost me spoons, but rather mental/organizational and social/emotional ones. If I have incorporated a set of actions into a routine, the entire routine only takes a little effort. However, if something is new or out of the ordinary, its spoon cost can skyrocket.

Thus, I can get up in the morning; get dressed, (not to be graphic) use the washroom, put on my shoes and coat, check my laptop, get P her clothes and something to drink, and help both of us get out the door, all for maybe half a spoon or less.
However, if I have to a) shave b) wash my face c) choose my clothing by any criteria other than grabbing one thing at random from each of separate drawers d) plan and make breakfast e) make a phone call f) pack something unusual g) take some painkillers... or a host of other things beyond the routine... it starts costing me. If I had to do all of those things in the same morning, it might take me three hours, because I have to approach EACH UNUSUAL TASK with a kind of conscious intention and planning that chews through an incredible amount of time.

It is now my routine to be outside in time to catch my bus, and after I catch that bus my responsibility is over until I reach class. That's pretty much spoon-free. However, if I had to spend extra time to get ready, the entire schedule could be off - and then I'm in uncharted territory again. If I miss the first bus, I have to jog the couple of kilometres to where the next bus in my route picks up from, and that's a spoon. If there's nowhere to sit on the bus and I have to reach up to the bars way above my head (since I'm short) to stay stable as we go on the highway to my university, that can be another spoon. All in all, one five-minute addition to my morning routine can leave me exhausted and sore before I even start class.

I calculate that approximately each hour that I spend at school costs about one spoon, depending on the activity - and, more importantly, the environment. Some lecture halls are better than others; some have a bank of fluorescent lights that seem to glare into my eyes no matter where I sit or if I sit anywhere but a select few seats, or that flicker - or the speakers buzz. Add up to a spoon for every one of these environmental influences present, per hour. Then, time spent not in class can be restful - such as if I find a padded bench somewhere quiet - or it can be worse - such as if I somehow get stuck in crowded hallways.

A Monday requires me to walk to the bus; I then spend 8am-4pm at school. A bad Monday could be 10-14 spoons' worth of energy expenditure and physical exertion and pain, and that's if I didn't have to open my mouth.

When I get home, if I know what I'm making for dinner - and if the kitchen is clean - and if I still have any energy left - I can swing right into cooking and it barely takes any 'work'. Still some, but I wouldn't call it a whole spoon. If I ran out of spoons yesterday before I could do any dishes, though, and the counter is covered in dirty cups; or if we have to - while getting increasingly hungry - hammer out a plan for a nutritionally useful meal that we can both stomach despite varying levels of nausea, which tends to then lead to me trying to cook a piece of meat straight out of the freezer, with all the problems that entails - dinner could be a multi-spoon endeavour all in itself. But eating something junky loses a spoon, too, because that means that my entire nutrition for the day was half a glass of juice or milk in the morning plus whatever I scrounge in the evening.

Then homework is extra. I've managed to make my statistics homework into a routine, so that's now a relatively easy task. My essays are making me want to cry, though, because I'm trying desperately to learn "how to write good papers in university" and I'm learning this year that THERE IS NO SUCH THING. There are no rules. Each grader in each course has a completely different set of requirements. "You're not citing enough!" then "I want to see some original thought! Don't cite every sentence." "Make a strong argument, only use enough facts to back it up," then "I want a review of the current state of knowledge - you're not presenting a case, just the facts." I need some consistency! How am I supposed to learn if the lesson is always changing? As I'm trying to emphasize here, I need solid rules to follow and as much routine as possible, and this is exactly the opposite. The social aspect of this - the confusion, anger, anxiety and frustration this is generating in me towards my professors and the university system in general - means it's costing me a spoon just to *think* about any of my homework besides my statistics.

There are what I call 'meta-school' things - handling our OSAP grants and loans, choosing courses, planning exams. These involve dealing with officialdom, and are never routine, so they take at least a spoon per effort.

Every two weeks I have to get a fresh injection of testosterone. The process of remembering to pack the vial, get to my appointment on time, make nice with the nurse, get stuck with a needle, and remembering to put the vial away again when I get home probably totals a spoon. It's reducing slowly as it becomes ever more routine. Having to go get a new vial when the old one ran out recently, however, was such a time and energy expenditure - planning (1), phoning the pharmacy (1), getting to the pharmacy (1) - that I had to move the actual appointment to the next day.

One of these posts is probably two to three spoons, considering the hours I spend typing and thinking, and attempting the difficult process of expressing my thoughts and feelings in words that other people will understand.

Spending face-time with other people might be the heaviest expenditure at all. I have to carefully craft a plan - I use that word on purpose. The reason for visiting (I can't just 'drop in', it doesn't work in my head). A way of asking to visit or to be visited. Food or drink to be consumed; I may have to pack us our own food because of dietary restrictions. I have to plan how to get there, tally up how long it will take; frequently it would take more time on the bus to get to a friend's house than I/we can spend actually visiting. Is this bus accessible? If not, P can't bring her wheelchair. It can take me half an evening to plan; carrying it out is then like winning the Olympics. Whoopee! I got there on time! I didn't get lost! I made it through a two-hour social interaction! I made it home before midnight! The entire process guarantees that I'm 'borrowing against' my spoons for the next day - so a quiet visit for tea will have me as laid up tomorrow as someone else's wild party.

I'll calculate that I have - as a very rough estimate - maybe 20 spoons to spend on an average day. As you can see, social/emotional tasks and tasks involving planning, rather than following a well-trodden routine, are my big 'expenses'.

This. This is why I think I have Aspergers. Not because I prefer books to people. Not because I have a limited diet. Not because I have a crappy memory for faces. Not because buzzing lights hurt me. Not because being crowded in a hallway makes me intensely - yet indescribably - uncomfortable. Not because I will sit and debate the definition of a word instead of understanding the emotional message behind it. Although all of these are potentially symptoms, reported by a vast majority of people with AS.
But because the core things that people with AS have trouble with are the things that cost me spoons. Time management. Social interactions. Planning outside a routine.

So. As the author of the posting said, please: feel honoured (just a little tiny bit) that I'm spending this time with you. You're worth the price.