Re: RE: Pain - The Spoon Theory - Good Reading

[Guest guest]

Thank you for the story. I saw that on another site recently. Always good

reading. HUGS

from PA

[Guest guest]

Well done.

buckswheat1 <buckswheat@...> wrote:

I hope you all enjoy reading this as I did when it was sent to me.

Although it is lengthy, it explains completely how to tell someone

how you feel when in pain.

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 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.

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 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 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 " , 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 " .

> >

> >

> > author:

> > Miserandino, 2003

> >