(VICT) Re: Zair
- From: "kitty hevener" <khevener@xxxxxxxxxxxxx>
- To: <vi-clicker-trainers@xxxxxxxxxxxxx>
- Date: Wed, 18 Jun 2008 06:01:09 -0800
Sandy, this is the first time I have heard disability explained quite like
this, and I really like it. I have the same feeling when I try to explain
chronic pain syndrome and why it is that some days I seem more capable than
others. I will have to try that explanation when am trying to get my
friends to understand what it is like.
----- Original Message -----
From: <Infinitepaws@xxxxxxx>
To: <vi-clicker-trainers@xxxxxxxxxxxxx>
Sent: Tuesday, June 17, 2008 1:12 PM
Subject: (VICT) Re: Zair
In a message dated 6/17/2008 9:19:32 A.M. Mountain Daylight Time,
bcpaws4me@xxxxxxxxxxx writes:
That's a hard one. I learned fairly early on not to try and work
with Thane other than a run when I am tired. They feel the difference in
us
no matter how hard we try and not display our tiredness.
Just my experience.
yeah, i know I shouldn't have taken him.. but my grandpa dearly loves the
dogs visiting and we have a whole slew of people there who look forward to
zair
or drifter visiting.. although truth be told, they like the big white giant
couch potato over the little black dog..grin.. I feel awful today and even
worse than yesterday, not going anywhere but to bed.. I made it through the
4
hours I was scheduled today at work but only just..I wish I knew a way to
clicker train myself out of being crabby and bitchy when I am this tired..
for
those of you who have read the spoon story.. I aint got any left.. and for
those
who havent... here it is, it is long but worth listening to/reading..
But You Donâ?Tt Look Sickâ?¦.
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
spend 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 spend most
of
our time laughing.
As I went to take some of my medicine with a snack as I usually did, she
watched me this time with a kind of start, instead of continuing the
conversation. She then asked me out of the blue what it felt like to have
M.S. and be
sick. I was shocked, not only because she asked the random question but
also, I
assumed she knew all there was to know about M.S. She had come to the
doctors with me, seen me getting MRIâ?Ts, she saw me stumble on sidewalks
and have to
sit down at a concert. She carried me out when I couldnâ?Tt walk another
step,
what else was there to know?
I started to ramble on about the medicines and the changes but she didnâ?Tt
seem satisfied with my answers. I was a little surprised as being my
roommate
and friend for years; I thought she already knew the medical definition of
M.S. Then she looked at me with a face every sick person knows well, the
face of
pure curiosity about something no healthy person can truly understand. She
asked what it felt like, not physically, but what it felt like to
meâ?¦having
M.S.
As I tried to gain my composure, I glanced around the table for help or
guidance, or at least a stall. 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 person with MS
goes through every day with clarity? I could have given up and cracked a
joke
like I usually do, and changed the subject, but I remember thinking if I
donâ?Tt
try to explain this, how could I ever expect her to understand? If I
canâ?Tt
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 â?ospoon theoryâ?? was born. I quickly grabbed every
spoon
on the table; I grabbed spoons off of the other tables. I looked her in the
eyes and said, â?oHere you go, you have M.S.â?? She looked at me slightly
confused, as anyone would when they are being handed a bouquet of spoons.
The cold
metal spoons clanked together as I shoved them into her hands. I explained
that the difference between having M.S. and being healthy is having to make
choices, or to think consciously about things when the rest of the world
doesnâ?Tt
have to. The healthy have the luxury of choice, a gift most people take for
granted.
Most people start the day with an 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 their actions. So for my
explanation, I used spoons to convey this point. I wanted something for her
to
actually hold, for me to take away, since most people who get M.S. feel the
â?olossâ??
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 M.S., in control.
She grabbed the spoons with excitement. She didnâ?Tt understand what I was
doing, but she is always up for a good time. Little did she know how
serious the
game would become.I asked her to count the spoons. She asked why, and I
explained that the spoons represented units of energy and when you are
healthy
you expect to have a never-ending supply of â?ospoons.â?? But when you have
M.S.
and you have to plan your day, you need to know exactly how many
â?ospoonsâ?? you
are starting with. It doesnâ?Tt guarantee 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
hadnâ?T
t even started the game yet.
Iâ?Tve wanted more â?ospoonsâ?? for years and havenâ?Tt 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 M.S.
I asked her to list off her day, including the most simple tasks. 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, â?ono, you donâ?Tt just get up.
You have to
crack your eyes open and then realize you are late. You didnâ?Tt sleep well
the
night before. You have to crawl out of bed, and you have to make yourself
something to eat before you do anything else because you have to take your
medicine and have energy for the day and if not you might as well give up
on spoons
for the whole day!â??
I quickly took away a spoon and she realized she hasnâ?Tt even gotten
dressed
yet. Showering cost her another spoon, just washing her hair and shaving
her
legs. Reaching too high or low, or having the shower water too hot and
choosing to blow dry her hair would have cost more than one spoon but I
didnâ?Tt want
to scare her too much in the beginning. Getting dressed is worth another
spoon.
I stopped her and broke down every task to show her how every detail needs
to be thought about. You have to see what clothes you can physically put
on,
what shoes are going to be appropriate for the dayâ?Ts walking
requirements, if
pain or spacticity is a problem, buttons are out. If I have bruising from
my
medication, long sleeves might be in order. You cannot simply throw clothes
on when you have M.S. â?" itâ?Ts just not that easy.
I think she started to understand when she theoretically didnâ?Tt even get
to
work yet 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 â?ospoonsâ??
are gone,
they are gone. Sometimes you can borrow against tomorrowâ?Ts â?ospoonsâ??
but
just think how hard tomorrow will be with less â?ospoonsâ??. I also needed
to
explain that a person who has M.S. lives with the looming thought that
tomorrow
may be the day that a fever comes, or an infection, or any number of things
that could prove disabling. So you do not want to run low on â?ospoonsâ??,
because
you never know when you truly will need them.
I didnâ?Tt want to depress her, but I needed to be realistic, and
unfortunately being prepared for the worst is part of the 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 on her computer
for too long. She was forced to make choices and to 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 two spoons left. If
she
cooked, she wouldnâ?Tt have enough energy to clean the pots. If she went
out to
dinner, she might be too tired to drive home safely without having blurred
vision or forgetting to turn her lights on. 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 canâ?Tt do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was
getting through to her. I didnâ?Tt want my friend to be upset, but at the
same time
I was happy to think maybe finally someone understood me a little bit. She
had tears in her eyes and asked quietly, â?oChristine, how do you do it? Do
you
really do this everyday?â?? I answered that some days were worse than
others ,
some days I have more spoons than most. But I can never make it go away and
I
canâ?Tt ever for a minute forget about it, I always have to think about it.
I
handed her a spoon I had been holding on reserve. I said simply, â?oI have
learned to live life with an extra spoon in my pocket, in reserve, you need
to
always be prepared.â??
Itâ?Ts hard, the hardest thing I ever had to learn is to slow down, and not
to
do everything. I fight this very 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 the 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 and my own body before I can attack any one
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
having a chronic illness and being healthy. It is the beautiful ability to
not think and just do. I miss that freedom. I miss never having to count
my â?o
spoons.â??
After we were emotional and talked about this for a 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 canâ?Tt 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 and we walked out of the diner. I had one spoon in my hand and I said,
â?o
Donâ?Tt 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 every day? I
donâ?Tt have
room to waste spoons and I choose to spend this time with you.â??
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 look
at
their own life a little differently. I think it isnâ?Tt just good for
understanding M.S., but anyone dealing with any disability or illness.
Hopefully, they
donâ?Tt take so much for granted or their life in general. I give a piece
of
myself, in every sense of the words, every time 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 â?o
spoons.â??
Sandy Foushee
Infinite Paws-Abilities Training and Service Dogs
Teamed with Alexandra Guide/Service Dog
Colorado Service/Assistance Dog Club - Trainer.-
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