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 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”.
© Christine Miserandino
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 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”.
© Christine Miserandino