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 because I thought being my roommate in college
and friend for years that 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 affected,
and describe 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 yourself 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 hadn’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, and 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 five minutes
for feeling badly that it took you two 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 six 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 7 pm, 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 than others; some days I have more spoons
than 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.”
It’s 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.”
Reprinted with Permssion, © 2003
by Christine Miserandino, www.Butyoudontlooksick.com
