[Namron] St. Camillus de Lilles First Newsletter - pp. 3-4

[Isobel de Kirkbryde]

    The Spoon Theory by Christine Miserandino
       
      My best friend and I were in the diner, talking. As usual, it was very  late and we were eating French fries with gravy. Like normal girls our age, we  spent a lot of time in the diner while in college, and most of the time we  spent talking about boys, music or trivial things, that seemed very important  at the time. We never got serious about anything in particular and spent most  of our time laughing. 
      As I went to take some of my medicine with a snack as I usually did, she  watched me with an awkward kind of stare, instead of continuing the  conversation. She then asked me out of the blue what it felt like to have Lupus  and be sick. I was shocked not only because she asked the random question, but  also because I assumed she knew all there was to know about Lupus. She came to  doctors with me, she saw me walk with a cane, and throw up in the bathroom. She  had seen me cry in pain, what else was there to know? 
      I started to ramble on about pills, and aches and pains, but she kept  pursuing, and didn't seem satisfied with my answers. I was a little surprised  as being my roommate in college and friend for years; I thought she already  knew the medical definition of Lupus. Then she looked at me with a face every  sick person knows well, the face of pure curiosity about something no one  healthy can truly understand. She asked what it felt like, not physically, but  what it felt like to be me, to be sick. 
      As I tried to gain my composure, I glanced around the table for help or  guidance, or at least stall for time to think. I was trying to find the right  words. How do I answer a question I never was able to answer for myself? How do  I explain every detail of every day being effected, and give the emotions a  sick person goes through with clarity. I could have given up, cracked a joke  like I usually do, and changed the subject, but I remember thinking if I don’t  try to explain this, how could I ever expect her to understand. If I can’t  explain this to my best friend, how could I explain my world to anyone else? I  had to at least try.
      At that moment, 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 Lupus”. 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. 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 Lupus, being in control. 
      She  grabbed the spoons with excitement. She didn’t understand what I was doing, but  she is always up for a good time, so I guess she thought I was cracking a joke  of some kind like I usually do when talking about touchy topics. Little did she  know how serious I would become? 
      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 Lupus.
      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 a 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, but I figured I  would give her a break; I didn’t want to scare her right away. Getting dressed  was worth another spoon. 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 are sick. I explained that I have to see what clothes I can  physically put on, if my hands hurt that day buttons are out of the question.  If I have bruises that day, I need to wear long sleeves, and if I have a fever I  need a sweater to stay warm and so on. If my hair is falling out 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 to work, 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, as well as standing on a train, or even  typing at her computer 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. 
      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 drive home safely. Then I also explained that  I didn’t even bother to add into this game, that she was so nauseous, 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. 
      I rarely see her emotional, so when I saw her upset I knew maybe I was  getting through to her. I didn’t want my friend to be upset, but at the same  time I was happy to think finally maybe someone understood me a little bit. She  had tears in her eyes and asked quietly “Christine, How do you do it? Do you  really do this everyday?” I explained that some days were worse then others;  some days I have more spoons then most. 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” 
      Its hard, the hardest thing I ever had to learn is to slow down, and not  do everything. I fight this to this day. I hate feeling left out, having to  choose to stay home, or to not get things done that I want to. I wanted her to  feel that frustration. I wanted her to understand, that everything everyone  else does comes so easy, but for me it is one hundred little jobs in one. 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 have to attack it and make a plan like I am strategizing a war. It is  in that lifestyle, the difference between being sick and healthy. It is the  beautiful ability to not think and just do. I miss that freedom. I miss never  having to count "spoons". 
      After we were emotional and talked about this for a little while longer,  I sensed she was sad. Maybe she finally understood. Maybe she realized that she  never could truly and honestly say she understands. But at least now she might  not complain so much when I can't go out for dinner some nights, or when I  never seem to make it to her house and she always has to drive to mine. I gave  her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t  worry. I see this as a blessing. 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” and I chose to spend this time with you.” 
      
               Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. 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 Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons"
  
 
          This  Guild is a Guild in the Society for Creative Anachronism (SCA).  However, the views expressed in this  newsletter do not necessarily reflect the views, rules, or mandates of the  Society for Creative Anachronism, Inc. 
    
      
 
       
    

Lady Isobel de Kirkbryde
Deputy Hospitaler, Barony of Namron
Guild Head of the Guild of St. Camillus de Lellis, Kingdom of Ansteorra
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