The Spoon Theory

[Guest guest]

The Spoon Theory

My best friend Jenni 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 this time, with a 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. Jenni

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 " Jenni, 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 choice, 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 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, 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 Jenni 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 " , 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, " Jenni, 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 " Jenni, 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 " .

© 2003 by Butyoudontlooksick.com

[Guest guest]

Stacey, that is a WONDERFUL explanation of a chronic condition -

thanks so much for sharing it!

Love Lana

> The Spoon Theory

[Guest guest]

Stacey, that is a WONDERFUL explanation of a chronic condition -

thanks so much for sharing it!

Love Lana

> The Spoon Theory