Lupus Support - Spoon theory for all the newbies

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Spoon theory for all the newbies

Beverley

2006-09-21, 9:36 pm

This has been around for a while but it really expresses things so well.

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 "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".

© 2003 by Christine Miserandino Butyoudontlooksick.com

Lori

2006-09-22, 4:28 pm

This is the best way I've ever heard of to explain what life is like
with Lupus. Thank You!

Beverley

2006-09-22, 4:28 pm

Thank Christine Miserandino who wrote it! She makes more sense of this
disease in those few paragraphs.
Bev

"Lori" <dashery@cox.net> wrote in message
news:1158952000.813146.11650@m7g2000cwm.googlegroups.com...
>
> This is the best way I've ever heard of to explain what life is like
> with Lupus. Thank You!
>

Linda-1

2006-09-23, 9:33 pm

I printed that story out and show it to everyone, I showed it to my
family and kids and now they understand.

I am even going to show it to SSI when I go in.

Thanks for sharing,

Linda