I was
talking with a coworker today about choices.
Everything we do is the result of a choice that we make, either
consciously or not. Some decisions are
worth a great deal of energy. Others are
...... not.
Years ago, I
worked with a woman that had lupus. She
pointed me to this story online, and it resonated with me. Now, I don't have lupus, but I love the idea
behind it regardless. We all have a
limit to what we can handle. We should
all make wise choices as to where we spend our energy. Trying to take care of everything just
exhausts a person; rather, we should decide what is truly important and spend our
"spoons" on that.
The Spoon Theory
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 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 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 every day?” 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 every day? 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”.
© Christine Miserandino (Source)
There's
another analogy out there that I love:
Take a jar
and fill it with ping pong balls. Is it
full? Yes, but only of ping pong balls. There’s plenty of room for gravel. So, pour in gravel until it’s full. Is it full? Yes, but only of gravel. There’s plenty of room for sand. So, pour in sand until it’s full. The ping pong balls represent the most
important things in your life. You have
to start with them first, because if you start with the gravel (urgent but not
important) and sand (not urgent or important), there’s no room left for the
ping pong balls. Now is the jar full? No, there’s always room for coffee with a friend. J
I don't consider myself an optimist or Pollyanna or the like. I define myself as a realist who chooses to look for silver linings. There's almost always something positive that can be gained from any given situation. It's all a matter of choice. Whatever is happening is going to happen regardless of how much you stress about it. So, rather than stress yourself out, choose to look for the silver lining.
I also do a time-check often. "Will this matter to me in a week?" Or a month, or a year? If not, why spend so much energy worrying about it today?
