In my home when the kiddos were small we used marbles. I had two jars: one was the ‘found’ jar and one the ‘lost’ jar. Hence, by the end of the day I had lost my marbles!! lol
We would remove some during the day to show where my energy was. It helped them to understand mommies disease.
I got the idea from this awesome story.
It is long, but it is for anyone suffering from a debilitating disease and those who love them and want to understand…
I wish I could take credit for writing it.
It’s Christine Miserandino’s personal story of living with a disability. While Christine suffers from Lupus, and not M.S., the two diseases are closely related; both are autoimmune diseases. The story below was modified by M.S. patients to address “M.S.” specifically. Christine is a recognized author, blogger, and has appeared on numerous television shows, including the PBS documentary Keeping Kids Healthy.
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 MRI’s, 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; hell 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 planyour 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 spacticity 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, “Christine, 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”…
© Christine Miserandino
My spoons, cards and gifts from some amazing friends when I was in the hospital :