This is a story I read on a mental health community support forum last December...I believe I have credited the correct author because , at the time it was posted by a woman from the UK I did not know...Thank you for sharing.
I have never forgotten the valuable lesson learned from"Spoon Theory." It is easy to become overwhelmed with life's physical and emotional difficulties at times. There are times when it just seems like there is no hope for understanding. The weight of the world seems too oppressive to bear and it is difficult to lean into the dim light. In reality there are always others that struggle through unthinkable hidden pain beyond ours.
There are not always the obvious signs... We are nearing a difficult time of the year for many who suffer from hidden and visible disorders... I t means a lot to see a smile or some form of acknowledgement from a stranger when someone may be just trying to hang onto a ray of hope.
Be the hope you wish to see in the world... We are "ONE" life...
Thanks for reading!
Harlon Rivers
The Spoon Theory
by Christine Miserandino
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
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 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 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 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".
