InkedGeekGoddess's blog: "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 MS
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 MS. 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 MS. 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 MS”. 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 MS, 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 MS.

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. 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 MS, 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".


© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note
that this story is copyrighted and should not be reprinted in any form without
permission from the author. Feel free link to “The Spoon Theory” at www.butyoudontlooksick.com/the_spoon_theory - Thank you!
Revamped for MS...