Spoons
Friday, February 29th, 2008A friend and I were chatting at a coffee shop. Out of the blue he asked me what it felt really like to be me, to have a epilepsy. I remembered a story I’d heard about a girl with fibromyalgia who used spoons to explain the condition to her best fiend so I thought I’d try something similar. I collected a handful of spoons from the counter.
I handed him the spoons and said ‘You now have epilepsy and chronic fatigue. The difference between being sick and being healthy is having to make choices and to consciously think about things when the rest of the world doesn’t have to. Most people start the day with unlimited possibilities and the energy to do what they wish. They don’t usually need to worry about the consequences of all their actions. So I’m going to get you to use spoons to convey this point”. I wanted him to hold something that could then be taken away, to show the feeling of loss that people who develop an illness feel - for the life they once knew. By taking the spoons away I hoped I could show him what it was like to have an illness in control.
When you are healthy you don’t have a restriction to the supply of spoons you get. When you are ill you need to know exactly how many spoons you are starting with, so you can plan your day. He had 12 spoons in total. He asked for more and I said that life wouldn’t give him any more.
I asked him to list all the tasks for the day – including the most simple. He rattled off daily chores and fun things to do – and I explained that each would cost a spoon. For the first task, He said ‘”getting ready for work”.
“Actually” I said, “you won’t just get up. You slept badly during the night so you’ve woken up late and all you want to do is stay in bed. You have to make something to eat fast because you’re going hypoglycemic and low blood sugar triggers seizures. If you have a seizure, it’ll cost you 20 spoons which means you loose all your spoons for today plus 8 from tomorrow too”. So I took away a spoon for having to get up and I took one spoon away for cooking and another for eating breakfast while feeling nauseous.
Getting dressed cost another spoon, because of the organization involved. If I have bruises from a seizure earlier in the week, then I have to wear something with long sleeves. If I am going to travel, I need to layer my clothing so that can it can keep me warm, should I get marooned by public transport, without boiling if I then step onto crowded trains. If I have carpet burns from a seizure, I need to spend longer making myself look presentable. I pointed out that it takes an hour and a half to do all this.
My friend realized that he hadn’t even got to work and he only had 8 spoons left. I reminded him that once the spoons were gone, they were gone. On occasions you can borrow against tomorrow’s spoons but tomorrow will be hell with less spoons – and more likely to trigger a seizure. I explained that anyone with an illness lives with the concern that tomorrow could be the day that they catch a cold or infection – or in my case a seizure that could be dangerous. So you never want to run too low on spoons because you never know when you will truly need them. I didn’t want to depress him but being prepared for the worst is real part of everyday for me.
Going through the rest of the day, every journey would cost a spoon. To be honest they can cost a spoon and a half in real life, owing to the preparation involved. I have to pack adequate supplies of food and water to ensure that I don’t get low on blood sugar should a train be cancelled/delayed or a connection be missed. I can’t eat wheat or dairy products, owing to medication, which means that newsagents and corner shops rarely stock anything that I can eat; wrong food leads to digestive upsets. And yes – being sick in public definitely costs a spoon.
I told him that skipping a meal would cost a spoon, as would going into a crowded place with low blood sugar. Sitting at the desk typing for too long cost a spoon. So he found himself having to make choices and think about things differently. He chose not to run errands, to enable him to eat dinner at night. I pointed out that he had only two spoons left and that cooking dinner and washing up cost a spoon each. This helped explain that some evenings I feel so exhausted that cooking is out of the question. If he ate out, he’d need one spoon for each journey (there and back). So he chose to cook and not wash up. So he was in debt for the next day, when he’d wash up. He pointed out that it was 7PM and he had the rest of the evening to fill and only one spoon. So he could choose to do only one thing – cleaning, chores or something fun.
It’s rare that I see my best friend emotional but after a long silence he asked “How the **** do you do it? How do you do this every day?”
I explained that some days were better than others and I may get more spoons than others. I can’t make it go away and I can’t forget about it. I showed him the spoon I’d kept in my pocket and said “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”.
The hardest thing I had to do is learn that I can’t do everything that I want to. I fight it to this day. I hate feeling left out – having to stay at home and rest. Everyone else gets things done easily but for me it is one hundred little jobs in one. I have to plan and strategize every task, each one like a military campaign, where I have to consider the weather, my temperature and many other things. The difference between being sick and healthy is in that freedom of lifestyle. It is the ability to not think about something and just do it. I miss that freedom. At times I just want a break from counting spoons..
As we left the diner, I said “it can actually be a good thing: do you know how many spoons people waste every day? I don’t have time for wasted spoons – and that’s why I choose to spend this time – this spoon - with you”. And I handed him the spoon I was holding.
I want to point out that throughout the last 18 months I’ve been through some pretty tough times, where I had far fewer spoons to start the day with owing to bad medication. The one thing I INSISTED I spend spoons on - above all else - was weight training. Here I am now, gradually getting my life more organized, thanks to understanding myself better and thanks to the friends I’ve made while spending those spoons in the gym. Every single spoon - and the people that I spent them on/with (they know who they are) was worth it. And I want to thank them.
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