Thank you for this!
Akua
Someone posted this on the TMIC awhile back and
I copied it. For those of you who haven't seen
it, here it is:
The Spoon Theory
Written by a woman named ëChristineí
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 ef!
fected, 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 donít
try to explain this, how could I ever expect her
to understand. If I canít 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 ìHere you go, you
have Lupusî. 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 doesnít! 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 ìlossî 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
didnít 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 s! erious 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 ìspoonsî
you are starting with. It doesnít 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. Iíve wanted more "spoons" for years and
havenít 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 simp! le. 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 donít just get
up. You have to crack open your eyes, and then
realize you are late. You didnít 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
donít, you can't take your medicine, and if you
donít 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
hasnít 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 didnít want ! to scare her right away.
Getting dressed was worth another spo! on. I st
opped 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 didnít 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 ìspoonsî are gone, they
are gone. Sometimes you can borrow against
tomorrowís "spoons", but just think how hard
tomorrow will b! e 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 didnít 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 h! ungry. I summarized that she had
to eat dinner but she only ha! d one sp oon
left. If she cooked, she wouldnít 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 didnít 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 canít do
it all.
I rarely see her emotional, so when I saw her
upset I knew maybe I was getting through to her.
I didnít 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 ìChristine,
How do you do it? Do you really do this
everyday?î I explained that some days were worse
then others; some days I have m! ore spoons then
most. But I can never make it go away and I
canít forget about it, I always have to think
about it. I handed her a spoon I had been
holding in reserve. I said simply, ìI have
learned to live life with an extra spoon in my
pocket, in reserve. You need to always be
preparedî
Itís 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 lif! estyle, the difference
between being sick and healthy. It is t! he
beaut iful 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 ìDonít
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
donít have room for wasted time, or wasted
ìspoonsî and I chose to spend this time with
you.î
Ever since this night, I have used the spoon
theor! y 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 isnít just good for
understanding Lupus, but anyone dealing with any
disability or illness. Hopefully, they donít
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".
--
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