Spoons: What It Feels Like to Be Sick

[Guest guest]

Dear Risg Friends...

This is from a dear friend of mine who has MS and she found it somewhere. It is

a beautiful way to explain to others what we go thru regardless of the illness.

Enjoy, Priscilla

Spoons

But You Don't Look Sick....

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 spend 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 spend most of our time

laughing.

As I went to take some of my vitamins with a snack as I usually did, she watched

me this time with a kind of start, instead of continuing the conversation. She

then asked me out of the blue what it felt like to have MS and be sick. I was

shocked, not only because she asked the random question but also, I assumed she

knew all there was to know about MS. She had come to the doctors with me, seen

me getting MRIs, she saw me stumble on sidewalks and have to sit down at a

concert. She carried me out when I couldn't walk another step, what else was

there to know?

I started to ramble on about the vitamins and the changes but she didn't seem

satisfied with my answers. I was a little surprised as being my roommate and

friend for years; I thought she already knew the medical definition of MS. Then

she looked at me with a face every sick person knows well, the face of pure

curiosity about something no healthy person can truly understand. She asked what

it felt like, not physically, but what it felt like to me.having MS.

As I tried to gain my composure, I glanced around the table for help or

guidance, or at least a stall. 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 person with MS goes

through every day with clarity? I could have given up and 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; **** I grabbed spoons off of the other tables. I looked her in the

eyes and said, " Here you go, you have MS. " She looked at me slightly confused,

as anyone would when they are being handed a bouquet of spoons. The cold metal

spoons clanked together as I shoved them into her hands. I explained that the

difference between having MS and being healthy is having to make choices, or to

think consciously 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 an 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 their actions. So for my explanation, I used

spoons to convey this point. I wanted something for her to actually hold, for me

to take away, since most people who get MS feel the " 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 MS, 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. Little did she know how serious the game

would become.

I asked her to count the spoons. She asked why, and I explained that the spoons

represented units of energy and when you are healthy you expect to have a

never-ending supply of " spoons. " But when you have MS and you have to plan your

day, you need to know exactly how many " spoons " you are starting with. It

doesn't guarantee 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 the game 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 MS. I asked her to list off

her day, including the most simple tasks.

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 your eyes open and then realize you are late. You didn't sleep well the

night before. You have to crawl out of bed, and you have to make yourself

something to eat before you do anything else because you have to take your

vitamins and have energy for the day and if not you might as well give up on

spoons for the whole day! "

I quickly took away a spoon and she realized she hasn't even gotten dressed yet.

Showering cost her another spoon, just washing her hair and shaving her legs.

Reaching too high or low, or having the shower water too hot and choosing to

blow dry her hair would have cost more than one spoon but I didn't want to scare

her too much in the beginning. Getting dressed is worth another spoon.

I stopped her and broke down every task to show her how every detail needs to be

thought about. You have to see what clothes you can physically put on, what

shoes are going to be appropriate for the days' walking requirements, if pain or

spasticity is a problem, buttons are out.. If I have bruising from my

medication, long sleeves might be in order. You cannot simply throw clothes on

when you have MS.its just not that easy.

I think she started to understand when she theoretically didn't even get to work

yet 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 has MS lives with the looming thought that tomorrow may be the day that a

fever comes, or an infection, or any number of things that could prove

disabling. 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 the 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 on her computer for too

long. She was forced to make choices and to 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 two spoons left. If she cooked, she

wouldn't have enough energy to clean the pots. If she went out to dinner, she

might be too tired to drive home safely without having blurred vision or

forgetting to turn her lights on. 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 maybe finally 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 answered that some days were worse than others; some days I

have more spoons than most. But I can never make it go away and I can't ever for

a minute forget about it, I always have to think about it. I handed her a spoon

I had been holding on 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 to do

everything. I fight this very 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 the

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 and my own body before I can attack any one 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 having a chronic illness

and being healthy. It is the beautiful ability to not think and just do.

I miss that freedom. I miss never having to count my " spoons. " After we were

emotional and talked about this for a 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 and we walked

out of the diner. I had 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 every day? I don't have room to waste spoons

and I choose 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 look at their

own life a little differently. I think it isn't just good for understanding MS,

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 words, every time 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 " .