Rewind #25: The Spoon Theory

Original air date: 2Jul2010

How do you explain what it’s like to be chronically ill or disabled to someone who has always been healthy? Is it possible to put your shoes on someone else, even for a mile? I have recently found the best explanation I’ve ever seen for describing chronic disease to someone who is healthy on a website called ButYouDontLookSick.com . The following is what Christine Miserandino has called “The Spoon Theory”. It can be found in its original location by following this link, but I have also included the text below. After printing this article out and giving it to one friend of mine with Lupus, she has already copied it out multiple times and begun distributing it to all of her friends & family. Another friend of mine (who received one of those copies) read it as part of his ToastMaster’s presentation. I believe this is simply profound -- but please let me know what you think.

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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”.

© Christine Miserandino
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Rewind #22: Three of the Scariest Words

Original air date: 10Apr2010

I have come to recognize the power of words ... the Bible calls it the power of the tongue, and that it holds the power of life and death. (Proverbs 18:21) In short, words matter! In an earlier post I talked about the power of speaking the truth vs the consequences of being a liar. When people come to know that they cannot trust what you say, that your words ring hollow in the other person’s ear because they have known you to lie just too many times, then you cease to have any kind of influence with that person. Frankly, I stop taking such a person seriously at all. When I know a person is a liar, or is willing to say whatever they think I want to hear (I don’t know why people say that, when they assume that people want to hear anything other than the truth,) then when they do say anything of importance, at *best* I doubt them, at worst I discount them altogether. 

There used to be three words that scared me more than any other phrase to say. I still find myself battling this (more often than I’d like to admit,) because these three words tend to taste very bitter and uncomfortable in my mouth. The implications of these words are not typically the impression that we want to give others about ourselves. And the more I have noticed that the more I recognize this characteristic in myself and I work to grow out of this habit, the more I notice in others. Let me give you a recent example from my life:

Last Wednesday evening I went to the local home improvement store to get flowers to plant in little pots I have by my front door. These pots are up under the overhang and receive no direct sunlight, so I needed to find plants that grew well in all shade. Since all I really know about flowers is that they are all colorful and pretty, I am really not the best judge about which flowers need to be planted in different settings of soil or light or water, etc ... (which is why mot plants around me have an average lifespan of about a minute and a half. Except weeds.) So after I had wandered up and down every aisle in the Garden Department, reading the little tags on every plant on the shelf in hopes of finding a tag that said, “This plant is very hard to kill! It requires no direct sunlight, you don’t have to remember to water it regularly, and the soil condition doesn’t really matter either. It is guaranteed to bloom constantly and last for years.” *That* plant might survive a whole five minutes at my house. Still wandering around aimlessly, an employee came up to me and asked if I needed help finding something. Evidently I was wearing my ignorance on my forehead. I told her about what I was trying to find - flowers that would do well in all-shade pots under an overhang. After a lot of huhing and hawing, she proceeded to lead me up and down all the aisles I just wandered thru, randomly picking flower tags to read to see if they matched my description. After recommending a few flowers that asked for “at least 6 hours of sun,” I think she was catching on to my frustration. I think that was on my forehead too. She assured me that those little flower tags can’t really be trusted, that they call annuals perennials, and say some need sun when they really need shade and vice versa. But then she’d grab a tag and read me the whole thing for info. At one point she read the planting instructions on a certain flower said 10”-18”. I asked her if that meant there has to be that distance between individual plants or if that’s the size planter they go in. She assured me it meant the size planter the needed. So I reaffirmed, “So it doesn’t mean that there needs to be 10”-18” between plants for them to grow?” She said, “Yes, it means they need that much space between them.” OK, now she was just making stuff up. I was not impressed. I asked if there was someone else that could help me.

So why was she so afraid to say those three dreaded words, that I have stumbled over and avoided at all costs countless times in my own life?? Why on earth can we just NOT admit, “I don’t know” ??? This is definitely an area that I have had a double-standard on for many years in my life, without really even knowing it. Whenever I was around someone (like that Home Depot garden rep) who would just make stuff up as they went along, obviously not having a clue what they were talking about, it would drive me nuts. Whenever a person actually admitting, “You know, I don’t really know the answer to that question, but let me go find out,” that was always so much more respectable! Yet I never had the courage to give that answer myself - I always had to feel like I knew the answer to every question ever asked. I couldn’t admit I didn’t know the best way to do everything -- I might look dumb (my worst fear) or people would think I wasn’t as smart as I wanted to be. What I’ve learned is that you actually look worse to the people around you! Who do you respect more, someone who willing admits they don’t know the answer to something and helps you find the answer, or the person that acts like a know-it-all and leaves you wondering if you can rely on anything they tell you? I personally respect the former! I have to admit that this is another area in which Danny has directly influenced my growth - even though I was pretty reluctant to grow at times, especially in our early marriage. I wanted so badly to be the perfect girl for him, that knew how to cook anything (that dream died quickly) and knew which socket to use. 

The bottom line of what I have learned is that people will actually respect you more and trust you more when you answer what you know and admit what you don’t. Have you ever gone shopping with a friend that says that everything you try on looks just great on you?? Well I don’t care who you are, not every piece of clothes is going to flatter your figure! After a little while, do you just quit asking for that friend’s opinion, because you know it’s always going to be the same answer and you can’t trust it? Although they are trying to be nice, I would rather have a friend be nice enough to tell me that if I buy those jeans I may as well be wearing a “Wide Load” sign. That’s a friend I can trust. I have learned that I feel more proud with myself when I can answer with confidence what I actually do know, and I feel more helpful as a friend when I help find the answer for them that I didn’t already know.

Rewind #20: A Man's Word

Original air date: 10Mar2010

How would you finish that sentence? “A man’s word is” .... his bond? His oath? His worth? A man is only as good as his word? I would probably agree with that last one. (And just so we’re clear, here I’m using the term “man” as in “mankind” or “humankind” ... substitute “guy” or  “girl” or anyone in particular for it. I’m talking universally.)

The interesting thing about my last few years is that I feel I have crossed over some invisible boundary. I didn’t notice it at the time, there was no “coming of age” celebration or a rite of passage I had to do, like eating eye of newt ‘and now I am a woman’ or anything, it has just slowly happened with time. There’s a funny phrase that I never used to understand that goes, “The older I am, the smarter my parents get,” that now I get. I mean that in terms of my physical parents, in terms of the generations before me, and in terms of general worldly wisdom. There are some things that make more sense to me now than they ever have before, and some things I appreciate more than I ever have. It just means that we really *don’t* have the world as figured out as we think we do in college, that yes - everyone really does go through that at that age, and no - your parents really didn’t spend the last 60 years sitting in a closet. They actually might have life experience that you just might be able to learn from. But don’t worry, they understand that too - after all, they felt the same way about their parents at that age. ;-)

One of those things I have come to appreciate is the strength of a person’s word. Can you trust what they say? Always? Do you ever have to wonder if they are just saying what they think you want to hear?? The more life experience I get the more I realize what it is worth to be able to depend on someone’s word at face value, and also the consequences of what it means if I cannot depend on it. Unfortunately this has come to light all too clearly recently, and it has just broken my heart. (Don’t worry, Danny and I are *fine* - it has nothing to do with that.) When a person can look you in the eye (or at least address you directly) and give you calm assurances of something, when you later realize that those words were only meant to soothe you and there was no truth in them at all -- what does that do for the next time that person tries to assure you of something? Even if it was just a one-time offense, there is still a mark there left in the memory. When a person is known for that characteristic, well then it becomes a filter through which you always view that person and their words. 

There are those on the opposite side of the pendulum that struggle with “too much” honesty -- in perhaps knowing how to address someone on a sensitive topic in a caring way, or knowing when to even say nothing at all. This type of person used to be my biggest concern, because of how many times I had been hurt by an abrasive approach. More and more experience in life has revealed to me that while we could always look back and write and rewrite our speeches to one another to word it better, more often than not I would have to hold up my own hand and admit that when I was being addressed about a sensitive topic and then complained about the delivery, there really was never an approach “compassionate” enough to avoid my wounded ego blaming the deliverer for the fact that I simply did not want to hear the correction being offered. But which is easier, to admit that I don’t like to receive correction, or to throw flaming arrows at the messenger for having the audacity to come to me about such a sensitive issue?? Which is done more frequently? And how often is the content of the message completely deflected on account of an attack on the delivery boy? In my experience, *far* too often. I can probably count the number of times I have overlooked a poor delivery (or actually even a mediocre one) to open my heart to the message being said. In our culture of “offend no one at all costs” and of “political correctness for all,” I applaud the person who still has the guts to have difficult conversations with a friend. They are hardly ever received well, and almost always the character of the messenger is assaulted for being unloving, uncompassionate, self-righteous or even hypocritical. Don’t we even go to the extreme of pointing out completely unrelated “faults” in the messenger, hoping that it absolves us of a responsibility to hear the message? Ahhh, the lengths we will go to in order to preserve our self-made view that we are perfect just the way we are, and it’s the *world* that has to change. 

In my recent life I have challenged myself to be more of an approachable person, especially when it comes to sensitive issues of correction. Do we think of ourselves as someone a friend could approach, if they had a concern to talk to about us? Is this view of ourselves actually grounded in history - or do we just *want* to be the approachable kind of person? If we asked our spouses or our family or our friends if they would be comfortable coming to talk to us about an issue they knew would be sensitive, what would they say? I have to honestly admit that my poor husband has lived with a wife who was not open to those kinds of conversations for far too long. It has really become emblazoned on my heart and I am working (with the help of God’s Spirit) to become the kind of person I desire to be, and it’s not easy. I know the struggle of the flesh and of pride all too well. But my motivation is that at the end of the day, I want my loved ones to know that *I* know that I am not perfect. I do, however, know the One that is, and I am trying day by day to live more like Him - and I know that along that road I may often need to stop and get directions from others walking the same path. Just because they help and offer me directions doesn’t mean that they think they’ve already arrived, but it just might be they can recognize a poor shortcut when they see one. Instead of shooting the messenger, claiming that ‘until they have reached perfection how dare they help me get there,’ shouldn’t we be paying more attention to the actual message? And I daresay that offering sincere gratitude to the messenger would go a long way too. Face it, we don’t really have all that much practice in talking to one another about gut-deep topics, so when we actually try it we might leave a lot to be desired. But we’re all trying. And I would rather know that when someone says something to me, of all the things that go through my head, whether or not that person is being truthful should not be one of them. It might be more uncomfortable at the time to tell people the truth instead of what you think they want to hear, but in the long run you will be a LOT better off for it. When have you ever looked back and been glad that someone did that to you?

Just some food for thought.