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”.
