Tuesday, March 23, 2010

I only have one spoon left today......

 I have started several new blog posts this past week but have been unable to finish any due to distractions caused by the healthcare vote - we all know it took almost every hour to keep up with that - finishing reading a couple of books I had started simultaneously, being told David and I  have no place to live this summer - three times! and having an extreme shortage of spoons.
Spoons you say.  What does that have to do with anything?

Christine Miserandino, who suffers with Lupus, developed The Spoon Theory and I credit her with brilliance in describing silent illness in a way that others can understand. Below is an excerpt of her theory with a few edits to make it appropriate for MS. (Christine's writing is in italics and my additions are not. Bold is also mine)

I am carrying around just one spoon today folks.

 Christine was sitting in a diner with a friend and in trying to discuss how her energy level works, the spoon theory was born.
I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have [MS]”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. [Please all my sleep deprived friends, understand that I know that you start the day with fewer spoons than most as well]  For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case [MS], being in control.

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has [MS and might not be able to pick them up]

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon [a BIG problem for me], but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. [see my blog post on the issue]I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you [have MS]. I explained that I have to see what clothes I can physically put on and what I can tolerate.  If my skin is tingling I will want tights or something firmly against my body. If my hands are weak that day buttons may be out of the question. If my balalnce is off I will need to wear something that looks OK with sneakers - so much for cute shoes.  If it is hot I surely don't want to wear long sleeves, and if I have a fever from taking interferon the night before I may need a sweater to stay ward off chills and so on. If my hair is dirty and I don't have energy to wash it or I have dark circles under my eyes, I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get [out of her bedroom], and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, eating might give her one back  if she selected her food carefully. Driving could cost two spoons if there was traffic or she might lose a spoon for standing on a bus or train, or even typing at her computer [or reading a book] too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. Let's hope there is food in the cupboard.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to travel home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous [from MS related fatigue], that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all. You are probably so tired that you will just fall asleep in front of the TV - often in your clothes . No spoon left to wash your face and brush your teeth.

I explained that some days are worse then others; some days I have more spoons. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “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 ever had to learn is to slow down, and not do everything I want. I fight this every day.  Just ask David, he is a better observer of how many spoons I have in reserve than I am.  I hate feeling left out, having to choose to stay home, or to not get things done that I want to...I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I  sometimes feel angry and I hate myself for that.. I miss  the freedom of never having to count “spoons”.

I do not see this as a blessing as some people would say -"Oh but don't you appreciate everything more."  NO! I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons”

 Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding [MS], but anyone dealing with any disability or illness or even a tough time in their life. Hopefully, they don’t take so much for granted or their life in general. 

In the next few weeks as David and I will plan what's next in this adventure we are on.   I will probably call on some of you for advice, ideas or even assistance.  Please do not think of me as lazy, incompetent or otherwise lame.  If I ask it is because I know that if I share one of my spoons with you I will get much much more in return.

1 comment:

  1. This is brilliant. Love the insight into living with a disease like this. I'll pass along to my best friend, who has MS. And to any of my other friends, who give "organ recitals" when they have nothing to complain about :)