Some years ago I came across this and it hit me as I have had a personal battle with Arthritis and Fibro (FMs). I would say this is the best way to describe most if not all chronic issues.
The Spoon Theory by Christine Miserandino
www.butyoudontlooksick.com
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 affected, 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 than 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” It’s 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".
I pass this along in hopes there are others needing an explanation. The Crazy Soul*
