Wednesday, September 10, 2014

Let's Talk About Spoons (and I don't mean the kind we eat with)

Howdy folks!

Yes, I know that I've been MIA for a month. Wow... a month.

I thought and I thought and I thought some more, about how I could yet again explain another one of my somewhat frequent absences from the blog. Well, I can start by telling you that these absences aren't just from the blogosphere. In many ways, they're an absence from life as well. Now, I know that sounds pretty dramatic and no, I'm not comparing chronic illness/Lupus to death. (although there are some days when I feel like he's standing right outside my door)

Let me start by saying that I've had some important things happening in my life this summer. Really important things. Like seeing and catching up and sharing some pretty awesome memories, with old friends at my class reunion. Many of whom I hadn't seen in 35 years. Yup. I'm that old.

I've also been planning and making arrangements for a shower that I'm hosting for my daughter, exactly 10 days from now. It's a baby shower. Actually, it's a grandbaby shower. As a matter of fact, our very first grandbaby. (And he's a grandson, in case anyone was wondering!)

Those are just a few (very few) of the things that have been happening in my life & keeping me away from the blog. These things might not sound very stressful or difficult to a lot of you. But when you have a chronic illness, sometimes the most ridiculously simple sounding things can be almost impossible to achieve. And then there's the price you pay for doing those "simple" things. But we'll get to that shortly. My biggest dilemma when it comes to trying to explain the reason behind my long absences is how, exactly, do I get my point across to someone who hasn't lived it?? Well, for starters, I'm gonna share a little story with you about spoons. Yup. You read that right. Spoons.

You see... when the majority of people see me outside of the confines of my beloved home and haven, (even my extended family members) I don't usually "look" like anything even remotely close to what I feel like on the inside. Lupus doesn't necessarily show it's ugly face on the outside. And in the cases where it does... well, that's what makeup and medications are for, right? (The picture down toward the bottom of this post might sound like a snarky joke, but in reality, it's more true than you could ever imagine.) I was feeling at a loss about just what I should say by way of an explanation for being gone so long...

Then I remembered about the story below. Not that I've ever forgotten what it says, (and I never will) but I don't really carry a copy around, that I can whip out of my purse and shove in someones hands, when they ask me what's "wrong" with me, or why I'm using a cane, or the most frequent comment... "Gee Mary, You look great! You must be getting/feeling much better." Instead, I just politely smile and thank them and say something like, "I have my good days, now and then" while inside I'm saying, "Dear Lord, if they only knew...". Well, sometimes it pays to have a blog. And I'm definitely not talking about money.

The story below and the amazing woman who wrote it, have both inspired and helped millions (yes, millions) who live with Lupus and other autoimmune or chronic illnesses, to feel as  though they aren't alone. It has also helped many of us explain why or how it is, that we aren't the same person that we used to be. But most importantly,  it's given us a way to ask for the understanding and patience that we so desperately need from the people we love. It is my story, but it also belongs to the millions of people in this country who live with Lupus or any another chronic illness, every day of their lives. Thank You, Christine!

I do hope you can take a few minutes to read it. If you can't, then hey, that's OK too. I know that everyone is busy these days and we all have our troubles to deal with, but I hope that if you don't have the time today, you'll come back and read it when you do. You see, I'm not asking just for me... I'm asking for the people in your own life, who might be feeling the same way I do.

After the story, you'll find some "after & before" photos of me. (cringe) That isn't a typo, by the way. I'm putting the after photos first to show you what the majority of people in my life see when they see me. Only a certain few lucky people get the (ahem) pleasure of seeing me without the makeup and coiffed hair. Well,until now, that is. I have to disclose that even the "bad "pics are not the worst of it. I just couldn't do it. Call it vanity. Call it pride. You can probably even call it fear.

The Spoon Theory 
by Christine Miserandino

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

I can't believe I'm gonna to do this..... But, if it helps at least one person to understand that just because someone "doesn't look sick" when you see them out in public, doesn't mean that they aren't. As the picture says....

This is how most people see or have seen me over the last decade or so....

And now for the transition....

This is what Lupus looks like (on a good day)...

This is National Invisible Illness Awareness Week
(Sept. 8 - Sept. 14 2014)
If you know someone or have a loved one who is living with a chronic illness, please try to look at them with the spoon theory in your mind's eye and just offer them your love and understanding. It might not seem to you that you're doing that much to help, but you have no idea what it will mean to them.

Much Love and Thank You

Oh... And here's a little update for ya! My hair was getting very thin and I'm sure the length had something to do with it. Being as fine as it was/is, it had to have been weighing it down to some extent. So, I went in for my usual color and highlights and figured I'd get a little trim. Well.... I don't know what possessed me, but I just decided to go for it and this is the result! (I'm still doing double takes when I walk past a mirror, but I'm getting used to it! LOL)

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  1. It is a very heavy load you carry and very brave of you to tell your own story so we can all have a little more understanding of a devastating condition.

    1. Thank you, Maureen! There are most definitely days when that load is lightened to some degree and during those times, I just try to make the best of it. As I mentioned on Facebook, I consider myself very fortunate to have this platform, not only to share my own experiences living with a chronic illness, but to maybe help give a voice to others living with an invisible illness, who don't have an opportunity to tell their own stories. You're a dear friend Maureen and I just want you to know how much I appreciate all of the love and support you've thrown my way over the years. Even when - no.... make that *especially when* I've been MIA for such long periods of time. It truly means more than I could ever say. xoxo (((Hugs))) Mary


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