Through a chain of links from fellow WordPress bloggers, I came across this site, www.butyoudontlooksick.com, and read an incredible story about what it is like living with a chronic illness. This story is told to better explain what life is like of the ill to those who are healthy.
I have Multiple Sclerosis
My recent diagnosis of Multiple Sclerosis has turned my world completely upside-down. At least now, though, I have an explanation as to why I have been feeling this way for over a year. Before the symptoms started, I was a VERY active person. An extremist, to be honest. Anything for the adrenaline rush was fine by me. Rock climbing was my passion, and the higher the climb, the better. Looking down on trees, boulders, people and cities in the distance that resembled a miniature model world was the BEST! Hanging hundreds of feet above the ground, making one move at a time by using just my fingertips crimping on a half-inch protruding flake, or jamming my hand in a crack; sometimes there was only a nub available to use as a toe hold, and sometimes there were no nubs – only the pressure exerted at the proper angle with the hopes that my shoes special Vibram© climbing rubber would not fail me. Then, when a hand hold fails, or that foot slips, to catch the air only to be stopped by bottoming out on a rope being held by my climbing partner. Ahhhh… the adrenaline rush which would course through my body penetrating every fiber, every cell, is unlike anything else in the world.
Then it all came to a screeching halt.
I am struggling very hard with both my job and my boss – who owns the company I work for. She has always been the kind of person that never gets sick, therefore she just does not understand and most certainly does not empathize with an employee when they are out ill. When I was at home with the flu, barely able to move, and making frequent trips to the bathroom, it was normal for her to call me and ask if I would be able to work from home. Are you kidding me? My head feels like an overstuffed melon floating above my body with no sense of synapsis occurring between the two, and half-living in the bathroom with not-to-pleasant material coming out of both ends… and you want me to work? Are you insane?
And that is just with the flu. Now… Multiple Sclerosis. My job future is not looking good. Our company is completely virtual, and one in which I can work entirely from home. But my boss is a control freak. If I, or any employee, is not in her sight, then she thinks they’re slacking off and not working – which has happened with previous employees in the past. So, she has poo-poo’d me working from home. Although I have a feeling that pretty soon, there won’t be a choice. The dizziness has been getting worse. I am okay when sitting down, but as soon as I stand up, my world spins. I cannot drive like this. My life is not worth risking for any job. I took a huge pay cut to both cut back on my hours and step down from my position as Director. I was second in command only to my boss – the owner. And the irony of it all is I single-handedly grew the company to what it is now. I worked anywhere from sixty to eighty hour weeks my first year only because I had no choice. I was it. Oh, sure, we had a Director of Ops back then who earned twice as much as I did, but she only appeared, at most, for twenty hours of work a week. Then through the success of the enormous events I was overseeing my first year at this job, the business just started pouring in afterwards. I quickly moved up the ladder and took over as Director.
But my recent cutback in hours and position is still not enough. This job is consuming my life and taking away anything that resembles a quality of life. I work for a company that provides mass hotel reservations for major sporting tournaments around the country – and hospitality is very stressful. Especially when trying to arrange blocks of rooms for over a hundred teams and using anywhere from twenty to fifty hotels. Not fun. And honestly, I hate it. It’s not my forte. Graphics and design is. But I was lucky to stumble across this job three years ago when I was working paycheck to paycheck at odd jobs after the mortgage collapse (I was a mortgage banker for ten years). I am not stupid, and knew that a was very fortunate when so many people were losing their jobs right and left.
I was able to handle the stress before. Hell, I’ve been through worse, to be honest. But now, the MS is taking control. My brain does not function like it used to. Mood swings are rampant and constant every day. My cognitive ability is deteriorating. And then the fatigue. Some days, I have to place my hands on the walls, the desks, the furniture, just to balance myself and catch myself if my legs give out from under me. Simply walking across the room to go to the restroom is like life in slow motion.
And just two years ago I was hanging hundreds of feet in the air far above the Clear Creek Canyon floor just outside of Golden CO. Now, I am alone. Twice divorced, no children, parents long deceased. My 401k and savings long gone after the mortgage collapse. Just my dear friend, Lyn, who has opened her home for me to live in…. and a LOT of dogs.
Well, I have rambled on much more than I intended on doing. So redirecting to this story called “The Spoon Theory.” Phenomenally written in such a manner that helps explain what life is like for those of us with a chronic illness… or illnesses for many.
I am going to send a copy of this to my boss. She does mean well, and we are friends. But when revenue comes into play, she is a pure capitalist. I think she could use a dose of what it’s like to be sick all the time.
This story or theory completely explains my life every day now from here until the end.
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