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 Lupu.
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”.
