Please take the time to read this story. It has become the universal language of chronically ill people. The story below was written by a woman with Lupus, but it works for all of us. (I don't have Lupus, in case you're new to my blog.) We refer to ourselves as "spoonies" and through this brilliant story we are able to help our loved ones understand our struggle a little better.
As you get into the story please note that the author's experience is true for me. She talks about having to overthink and over-prepare for everything; this is how life is for me: I cannot just get dressed and go. I have to consider everything. I have to worry about the weather and which symptoms are flared up the most. I have to dress for that. My level of personal hygiene depends on how I am doing each day. I am a night showerer because showers take too much out of me--if I shower in the morning I can't do anything that day; if I showed at night I can collapse when I am finished. Is my bad foot swollen? Can I put a sock and shoe over it or do I have to wear some type of flat that is open on top. (This results in me wearing Sperry's to physical therapy and exercising in them.) Each day I look in the mirror to see if the bags under my eyes look like black eyes, and some days they do. Cold aggravates my symptoms terribly. Even in the summer, I bring a sweater everywhere, just in case. But at night I have to make sure the room is frigid because I get terrible, awful night sweats.
This is a state of existence that isn't normal for most people; even my husband forgets, at times, that I have to process life that way. My husband and I don't use the language of "spoons" day-to-day, but we are talking about the same thing. The author speaks about having to worry about doing too much today and borrowing spoons from tomorrow. When making plans, Kevin and I talk about how I'll be "dead" or "crashed" or "useless" the following day. And this is truly how we make plans: "Well, if we go to dinner with your parents after PT on Wednesday, I'll be dead Thursday, so we can't go shopping until Friday..." Recently I was overzealous in planning a three day stretch. Day 1 required walking more than I typically do in a whole week. The following day I had to take a morning shower (eek!), go to a doctor, and I had plans to go out and be social that evening. Day 3 included a morning appointment and dinner plans with my 91-year old grandmother & 90-year old great aunt. This is, for me, an impossible schedule. I don't know what I was thinking (that I was normal?) when I scheduled this, but I couldn't do it. I was completely dead by the end of day 1! But I had to keep going--both doctor's were appointments that I couldn't miss. After showering and dragging myself to my appointment on day 2 I crashed and couldn't go out that evening. I had to accept that in order to make my appointment on day 3, I had to stay in the night of day 2. I hate it, but that's my reality.
Despite hating some aspects of living this way, I agree with the author about the benefits: living with limited "spoons" forces you to prioritize. We don't waste time on unimportant things. The people we make time for are precious to us. We don't have the luxury of taking anything for granted. So enough of me relating to the story below. Please, please, please read it!
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 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 yourself 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."
© Christine Miserandino
