An attempt to describe a day with Lyme disease...
A friend recently sent me this email with the title and subject being "The Spoon Theory". I could not have written this better, so I am just going to post her email for all my friends and family who have been asking what this disease is like on a daily basis...here is a day in the life....
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The Spoon Theory
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 Lyme disease 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 Lyme disease. 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 Lyme disease. 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; heck I grabbed spoons off of the other tables. I made a boquet of spoons! I looked at her in the eyes and said "Here you go, you have Lyme disease". 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 these daily, tedious 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 the bouquet of 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 Lyme disease, 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 around the illness, 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 Lyme disease.
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 a 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 to a lymie. 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 "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"
It’s 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 Lyme disease, 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".
--Written by an anonymous “Lymie”
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