MDS World Awareness Day 2019: MDS Poetry

October 25th is MDS Awareness Day. This year we focus on poetry as a way of expressing our feelings about living with MDS or being affected by it.

We know that MDS affects people from all over the world and it is the help of friends and family, doctors and the wider community that can really help and support patients in managing their condition. For this reason we would like you to dedicate the poems to those that have helped you when needed most.

Please share these poems on your website and social media. Tag supporters, hospitals, doctors, politicians, friends, fundraisers, family members or colleagues on Twitter, Facebook or Instagram and dedicate the poems to them as a way of thanking them for their help. You could use the following tags: #Living with MDS, #Poetry, #Haiku. On twitter please use the hashtag #MDSWAD.

International Poem – Written with inspirations and contributions from MDS Alliance Members

by Kate D

United

“Why me?” I ask, as jealously

I watch the world going by;

my husband to work,

my daughter to study,

my head to so many places,

my body to none.

Not only “Why me?”, but

the whole world over

experiencing the mourning

for a life once lived,

life acknowledged,

somehow ended – unplanned.

One life ended, another begun –

Appointments, conversations

with doctors and treatments

abound as medical language

becomes everyday conversation.

Each one of us receives our same diagnosis,

and embarks on a journey

unique to us, individual,

but encountered by so many

sharing the same feelings;

bewilderment, grief and…

Hope. Hope that maybe

out there, somewhere, there

is someone with knowledge,

not the tilt of the head

nor a ‘there,’there’ pat, but with

concern and love and warmth.

And they are there, these people,

although we don’t know them,

who virtually, through the ether

as a spirit guide, offer comfort

and support from a place of

understanding with knowledge,

as a family would if they could.

Wrapped up in our blankets

of worry and anger, of

anxiety and pain, to forget is too easy

that others are feeling exactly the same.

Gradually, together,

we can unite in our symptoms,

our feelings, our grief and

our hope.

Korean Poem  MDS World Awareness Day 2019

Written by KBDCA (Korean MDS Group)

[English Version]

Happiness is no where

There is no place to go and nothing to do.
I am an MDS patient.
Happiness isn’t here now.
I’m relieved of my worries.

But no hurry anymore.
I have a family.
Happiness is here now.
I got rid of my worries.

Happiness is now here.

[Korean Version]

<행복은 어디에도 없습니다>

갈 곳이없고 할 일이 없습니다.
저는 MDS 환자입니다.
행복은 지금 여기에 없습니다.
걱정이 덜어졌습니다.

그러나 더 이상 서두르지 마십시오.
나는 가족이있다.
행복은 지금 여기 있습니다.
걱정이 없어졌습니다.

행복은 지금 여기 있습니다.

The meaning of this poetry:

The most important thing for cancer patients is the will. Cancer fighting is a long fight not only alone, but with the family. That’s why it’s important to have a positive mind and think that you’ll be cured.

The sentence „Happiness is no where“ and the sentence „Happiness is now here“ have only one space difference. I wanted to tell you through poetry that everything depends on minor differences and mindsets.

US MDS Alliance Members – MDS Foundation, Inc. and AA & MDS International Foundation Poem 

Written by Neil Horikoshi

Bone marrow. Coloured scanning electron micrograph (SEM) of bone marrow from a fractured rib. Bone marrow lies in the spaces of the spongy (cancellous) bone within the centre of the bone. Bone marrow contains stem cells which, through the process of haemopoiesis, generate the three main types of cells found in the blood: red blood cells (erythrocytes-coloured red), white blood cells (leucocytes-coloured grey) and platelets (thrombocytes). Magnification: x 2500 when printed 10 centimetres wide.

MDS affect us silently,

Defining our lives as we get older,

Slipping us into a medical journey.

 

MDS affects over 100,000 people each year,

Diagnosis can be high or low,

Signaling our decisions for different therapy.

 

MDS is high risk when blast counts are high,

Daily prayers set in,

Sliver of hope for next year.

 

MDS can be low risk,

Daily prayers set in while,

Seeing the years ahead.

MDS is a bone marrow failure,

Doctors (some) say it is a cancer,

So who cares, when my life is at stake.

 

MDS Alliance is a global network,

Determined to help patients and families,

Survive another day while waiting for the cure.

 

MDS Foundation and AA & MDS International Foundation both

Develop and provide valuable educational materials, and compassionately

Support MDS patients in their journey and give them hope.

MDS UK Patient Support Group

Invisible – Written by Kate D.

“You look well” you say,
brackets, (“for someone with cancer.)
And I think,
“Do I?
Do I really?
Because I don’t feel well at all.”Peel off my steroid mask,
The wig and the rosy drug induced glow,
And you will see pain
And sing a different tune.If I wore a scarf on my head,
turban – style, had a plaster cast or a
walking stick,
You would know.I haven’t.
So you don’t.
But let me reassure you,
if you could feel the pain in my joints,
shooting as a bullet does
minute by minute,
or worse,
suddenly
taking you unawares.If you could feel
legs and arms like jelly
refusing to obey commands.If you got stuck and
and had to phone
for help.If you lost all your independence.
If you had all those things, then
you would know and never
say those words to anyone –
again.

WAD poem – OCTOBER – Written by Kate D.

Once diagnosed, we begin a long journey
Circumnavigating appointments and doctors and
Treatments,
Or not, as we
Become used to the waiting rooms and watching and waiting
Expecting the unknown, not knowing what to expect,
Relying upon the expertise of those we don’t know.