I did not write this but I love it. I do not know who wrote it other than her name is Niamh. I hope that if she sees this she won't mind that I am sharing it here. I truly love this and hope that you do as well.
Similar to Christine Miserandino – writer of the Spoon Theory – I too have made a visualisation tool for my friends and family to associate with how I’m feeling. I call it the rope theory and it occurred to me that I should share it
with my fellow lupies, as it helps me deal with some of the aspects of this horrible illness, and encourages me to overcome it.
I was sitting on the sofa watching a film one Saturday night with my
boyfriend and I was having a particularly bad day. We got up to go into the
kitchen and as he stood up with ease, I pushed my upper body forward but I just
couldn’t manage to stand up. It was like my brain was telling my body “C’mon!
You know what you have to do!” but my body was too busy sleeping to pay any
attention. He reached out his hand to help me up but as I went to take it, I
changed my mind. Alongside lupus I have been repeatedly diagnosed with extreme
pride and stubbornness. I suddenly thought of ‘climbing rope’ during PE
class.
I remembered as a child of maybe 7, going into my primary school’s gym and
inspecting the ropes that hung from wooden frames around the sides of the room.
There were ropes with thick, bulging knots placed every couple of inches up the
rope, allowing anyone really to climb with ease, giving them both a stepping and
pulling mechanism the entire way. Then there were ropes with maybe three or four
knots along the length of rope, which the stronger or fitter children could
climb, allowing them to go the first few inches and then enabling them to pull
themselves up short distances along the rope. And lastly, there were the smooth
ropes. They offered no knots, no handles, no extra help whatsoever which only
the truly strongest could climb. It involved jumping as high as possible,
holding on to the rope with your fist gripped as tight as your knuckles would
let it and having the determination and strength to pull the entire weight of
your body higher and higher, to eventually succeed in hearing the high pitched
clanging when you ring the bell that hung proudly from the ceiling. At that age,
there were no exams; and after all we were not being tested on our ability to
climb rope, so the majority of the class wouldn’t give it their all, would
pretend to attempt it, then fall back to the ground with a thump, laughing as
the teacher sighed and made disparaging remarks from the corner. Then there
would be two or three individuals, naturally athletic and energetic, that could
climb all three ropes with effortlessness and would ring the bells, jeering down
at their friends for being lazy. Then there would be one student, not sporty by
nature or the strongest child in the class, but who possessed great fortitude
beyond their years. They would try hard to ring the bell of the first rope. They
would then try harder to ring the bell of the second rope. And try their hardest
to reach the bell at the third rope. Going unnoticed by the teacher, this
student would try and try again until their hands were red with rope-burn,
sometimes succeeding, and sometimes not.
I held onto the arm of the sofa, and I heaved myself upwards to stare my
boyfriend in the face. And that’s when I burst out laughing. After seeing my
struggle getting up, he was understandably confused by the girl in fits of
giggles standing before him. For him, to perform the simple task of standing up
is fluid; nothing more but an action that is needed to get from one place to
another. For me, it was an accomplishment; a minor one yes, but a triumph
nonetheless. It was at that moment that it all made sense to me. To get to point
B, a healthy person simply has to get up and walk from point A. At point A, a
person with lupus has to get up, book flights, drive to the airport, and fly on
a plane to catch a bus to jump on a train to get in a taxi to then be able to
walk to point B. And yet both people are standing at point B at the end of it
all.
At a mere 18 years old, I’m coming to terms with the idea that I’m faced with
struggles that a healthy 18 year old wouldn’t even consciously notice. That
there are people who don’t try at all and can fall to the ground laughing,
people who can succeed with such simplicity and there are those who have to work
the hardest. I often struggle with the idea of having to put in ten times the
effort as my peers to achieve the same, sometimes even less than them. But being
stricken with a disease like lupus, I’ve been given an ultimatum. Upon
diagnosis, one has a choice; to choose to live the life they had already planned
for themselves, or choose to let lupus plan their life for them.
I’m still coming to terms with the idea of being on the predisposed
disadvantaged team. I have to learn to slow down, to listen to my body before my
mind but worst of all I must understand that most people my age will never truly
appreciate the effort I have to put in. It may seem to other people that I’m not
as hard-working, determined or as enthusiastic as them simply because I don’t
achieve what they achieve or go where they go in life. But in my heart I feel
ten times more hard-working, determined and enthusiastic because I still manage
to achieve some things, even if it just standing up.
I have days when my rope is made up of dozens of knots, when I have no pain
and bundles of energy and I can perform tasks with relative ease. There are days
when it takes some motivation to pull myself higher, when I have some pain, a
little fatigue and slight nausea. And then there are my bad days. In my bad days
I’m presented a smooth rope, with no knots, no handles and no extra help
whatsoever, days in which I must rely on my own willpower and strength of mind
to perform the littlest of tasks. Being met with silence is hard, and being met
with nothing but rope-burns to show for it can be even harder. But when we do
reach the top of the rope, and we hear the deafening ring of the bell, we can
find comfort in knowing that we deserve every single note the little instrument
belts out.
So, my fellow lupies, I encourage all of you to climb the ropes you are
given. Although it may not show to the outside world, knowing in your heart that
you are standing up in the face of adversity, even in the simplest of ways, is a
magical feeling. And who knows, maybe when we reach the top of the ropes instead
of being met with bells, it could be a basket of spoons!
All my best, Niamh x
Similar to Christine Miserandino – writer of the Spoon Theory – I too have made a visualisation tool for my friends and family to associate with how I’m feeling. I call it the rope theory and it occurred to me that I should share it
with my fellow lupies, as it helps me deal with some of the aspects of this horrible illness, and encourages me to overcome it.
I was sitting on the sofa watching a film one Saturday night with my
boyfriend and I was having a particularly bad day. We got up to go into the
kitchen and as he stood up with ease, I pushed my upper body forward but I just
couldn’t manage to stand up. It was like my brain was telling my body “C’mon!
You know what you have to do!” but my body was too busy sleeping to pay any
attention. He reached out his hand to help me up but as I went to take it, I
changed my mind. Alongside lupus I have been repeatedly diagnosed with extreme
pride and stubbornness. I suddenly thought of ‘climbing rope’ during PE
class.
I remembered as a child of maybe 7, going into my primary school’s gym and
inspecting the ropes that hung from wooden frames around the sides of the room.
There were ropes with thick, bulging knots placed every couple of inches up the
rope, allowing anyone really to climb with ease, giving them both a stepping and
pulling mechanism the entire way. Then there were ropes with maybe three or four
knots along the length of rope, which the stronger or fitter children could
climb, allowing them to go the first few inches and then enabling them to pull
themselves up short distances along the rope. And lastly, there were the smooth
ropes. They offered no knots, no handles, no extra help whatsoever which only
the truly strongest could climb. It involved jumping as high as possible,
holding on to the rope with your fist gripped as tight as your knuckles would
let it and having the determination and strength to pull the entire weight of
your body higher and higher, to eventually succeed in hearing the high pitched
clanging when you ring the bell that hung proudly from the ceiling. At that age,
there were no exams; and after all we were not being tested on our ability to
climb rope, so the majority of the class wouldn’t give it their all, would
pretend to attempt it, then fall back to the ground with a thump, laughing as
the teacher sighed and made disparaging remarks from the corner. Then there
would be two or three individuals, naturally athletic and energetic, that could
climb all three ropes with effortlessness and would ring the bells, jeering down
at their friends for being lazy. Then there would be one student, not sporty by
nature or the strongest child in the class, but who possessed great fortitude
beyond their years. They would try hard to ring the bell of the first rope. They
would then try harder to ring the bell of the second rope. And try their hardest
to reach the bell at the third rope. Going unnoticed by the teacher, this
student would try and try again until their hands were red with rope-burn,
sometimes succeeding, and sometimes not.
I held onto the arm of the sofa, and I heaved myself upwards to stare my
boyfriend in the face. And that’s when I burst out laughing. After seeing my
struggle getting up, he was understandably confused by the girl in fits of
giggles standing before him. For him, to perform the simple task of standing up
is fluid; nothing more but an action that is needed to get from one place to
another. For me, it was an accomplishment; a minor one yes, but a triumph
nonetheless. It was at that moment that it all made sense to me. To get to point
B, a healthy person simply has to get up and walk from point A. At point A, a
person with lupus has to get up, book flights, drive to the airport, and fly on
a plane to catch a bus to jump on a train to get in a taxi to then be able to
walk to point B. And yet both people are standing at point B at the end of it
all.
At a mere 18 years old, I’m coming to terms with the idea that I’m faced with
struggles that a healthy 18 year old wouldn’t even consciously notice. That
there are people who don’t try at all and can fall to the ground laughing,
people who can succeed with such simplicity and there are those who have to work
the hardest. I often struggle with the idea of having to put in ten times the
effort as my peers to achieve the same, sometimes even less than them. But being
stricken with a disease like lupus, I’ve been given an ultimatum. Upon
diagnosis, one has a choice; to choose to live the life they had already planned
for themselves, or choose to let lupus plan their life for them.
I’m still coming to terms with the idea of being on the predisposed
disadvantaged team. I have to learn to slow down, to listen to my body before my
mind but worst of all I must understand that most people my age will never truly
appreciate the effort I have to put in. It may seem to other people that I’m not
as hard-working, determined or as enthusiastic as them simply because I don’t
achieve what they achieve or go where they go in life. But in my heart I feel
ten times more hard-working, determined and enthusiastic because I still manage
to achieve some things, even if it just standing up.
I have days when my rope is made up of dozens of knots, when I have no pain
and bundles of energy and I can perform tasks with relative ease. There are days
when it takes some motivation to pull myself higher, when I have some pain, a
little fatigue and slight nausea. And then there are my bad days. In my bad days
I’m presented a smooth rope, with no knots, no handles and no extra help
whatsoever, days in which I must rely on my own willpower and strength of mind
to perform the littlest of tasks. Being met with silence is hard, and being met
with nothing but rope-burns to show for it can be even harder. But when we do
reach the top of the rope, and we hear the deafening ring of the bell, we can
find comfort in knowing that we deserve every single note the little instrument
belts out.
So, my fellow lupies, I encourage all of you to climb the ropes you are
given. Although it may not show to the outside world, knowing in your heart that
you are standing up in the face of adversity, even in the simplest of ways, is a
magical feeling. And who knows, maybe when we reach the top of the ropes instead
of being met with bells, it could be a basket of spoons!
All my best, Niamh x