*_The Spoon Theory
by Christine Miserandino
www.butyoudontlooksick.com_
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
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".
© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted
in any form without permission from the author. Feel free link to "The
Spoon Theory" at www.butyoudontlooksick.com/the_spoon_theory - Thank you!*
