Second Edition: But You Don’t Look Sick.

I watched Love and Other Drugs before yesterday, which had more flesh than necessary to tell any story… ever.  I had wanted a comedy about pharmaceuticals nonetheless, but about mid-way I stopped laughing so much.  I did not know it was a chick flick.  One close to home.  The following contains spoilers (not in detail), but if you still plan to see it be careful.

So, the main character had Parkinson’s.  A degenerative disease the progresses with time.  I had paused the movie at this point where I realized I was in for some head work and went downstairs to the garage, carefully because my ankles were weak and crackly, legs were tight, knees stiff,  back had strange swelling, other organs flared, and decided to see what’s up with Husband. And hug him.  I told him how hilarious the movie was.  It was awesome, blah blah blah.  Looking straight at me, he immediately asked, “She’s sick, isn’t she?”  Boy can read me like a book. (p.s. Props to him for being there for me, doing laundry, and making sure I don’t feel sorry for myself.)

And, so I’ve never connected so much with the character a movie star portrays (Except Amelie, story for another day).  The fears, the annoyances, the inconvenience, the insecurities, and the walls of conscious denial someone with limitations has to live with.  People that are sick are usually misunderstood or treated different by many, if only slightly enough to make you feel unsure.  It’s usually the ones who have struggled with some temporary illness, an sick family member,  or some kind of infirmity that sympathize and/or empathize with you.  You either end up with the ones who view you with indifference and expect you to carry on as if your life wasn’t severely affected, or the extreme opposite who ask you how you are doing like you are made of porcelain mentally and physically.  Sometimes it could just be a personal perception, an isolation that occurs from being set apart from the healthy, where you imagine people are viewing you a particular way when really their heads are not thinking about it at all.  (At this point, it’s become a question of living with it without using the ‘sick’ undertone, and more like :lifestyle ‘overtone’. )

I’ve gotten the  “How are you doing today?” with the severe head tilt that’s about to fall off as if I were incapable of handling being out in public.  Of course, the worst one, “If I had to live on your diet, or if I couldn’t eat gluten, I would shoot myself!”.  However, the reactions that make me most aware of my situation are the ones with non-reactive behavior.  The blank stares.  The ones who will search the floor and ceiling tiles searching desperately for something inspirational, as if we need it every time we see them.  The ones who skip over what you just said, indifferently, because you’re officially boring.  The friends that stop calling because you can’t hang out much anymore.  During the day, I get all too many reminders of what I can’t do.  Apparently,  I can’t even rent  feel-good movie without the risk of having to re-live the emotional torture of how illness in young people affect work, love, play, and peace.

However bleak the reaction or non-reactions received,  it’s the raw truth, not bitter deprecation. Some people honestly have the right intentions and are more aware of their reactions and some just have to say something, anything, to stop talking about illness because it’s so depressing to them. But every once in a while, somebody gets it.  Some are even interested to know what it might be like.  Some even offer to help.

So for those who care to know, below is an very concise illustrative story that -although I find it very cheesy and verbose- one Lupus patient used to describe to her friend, who had asked to know what it’s really like.  I couldn’t help but choke up a bit.  This story grew to a theory and a band of Lupus followers who call themselves Spoonies.  I won’t join that wagon.  I love to make spoons, but prefer to fork.

I’ve always been fascinated with disease and pathology, even before I had any inclination that I might ever get struck with one of these hip, trendy  epidemics.  I would read books about it for fun (NOT WebMD).  However, I still didn’t let myself relate to a person in pain, with trauma history, or mental illness, too much that it would inconvenience me unless they were already in my life.  One good thing I’ve gained from being in an unfortunate position  is that I now empathize with almost anyone, especially the ones becoming ill or that just need someone to listen.  And if my health allows, I prefer to do more than just care and be there for them in whatever method it be. If.

I’m just as cheesy as the spoon story below, but experience will take the poop jokes out of your stories.  Sometimes. If the occasion really calls for it.

Read below if you are interested what one day with Lupus is.  Skip through the wordy parts. I’ve read this before, but one of my blog subscribers sent it to me.  It made my day, that day. See the link if you’re tired of being on the same website (like I get bored of being on one page too long.  The fast track, people!)

Thanks, Tiffany and Christine

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”.


Filed under Loopy Lupus

7 responses to “Second Edition: But You Don’t Look Sick.

  1. Naner

    Brilliant! Thank you. A simple illustration with a common object.

  2. yrnbt

    I agree! Don’t like the whole pity: Are you ok? Or people blaming everything that is wrong with you with whatever you have. People just don’t understand and choose not to. They just wanna make themselves look better when we’re feeling sick, low or not ourselves. It’s sad!

  3. chronicbutterflyface

    So I love how you wrote this – I watched love and other drugs with my cousin and a friend. When I saw saw her first tremor I burst into tears and no one could understand why. I didn’t even have words to explain to them how it made me feel,… I am probably just going to refer them to this blog post. You’re such a talented writer – reading your stuff really does lift up my day.


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