It’s not such a small world, after all, is it? written by Reta Derkson

I want to share a poem my Mother wrote for me last year….. I am 42 now and have been diagnosed 23 years and has my life changed…..

When you were small
The world was this big, magical place
Waiting for you to explore, to grow up
And see the world and
Go and DO things
And feel things
And invent things to
Fit the world into your eyes,
Your heart,
Your mind
And it was like that for awhile…
Until the earthquake….
That shattering of the illusions of reality
When the diagnosis of MS
Became more real than fiction
And you began to spiral up and down
Like those spinning decorative rods that
People hand on their balconies to
Catch the wind and
Reflect the sun…
And for while you laughed and danced
All the while the darkness was encroaching
Day to night and
Nightmares came and took your spirit
Piece by piece like
Hades
and I, being Demeter
Had to let my Persephone go
So you could return in the spring
From the depths of
Steroids and pills for pain, confusion, depression and
Whatever else the medical profession saw fit to give you
Until you became strong enough to dance again
Though wobbly and unsteady
Shaking to the beat
Of a drum
Only you could hear.
Then you reinvented yourself
And your world became smaller still
Though enlarged by the
Universe
Of your laptop
And you travel to exotic
Destinations that one can find on Google maps
Egypt, Dubai, Tunisia.
The Middle East has many wars
And the war on and in your body
Is the same
One never knows what to believe
What is coming next?
What or who will die off, be slaughtered
Be killed, and we learn
Compassion for others in war-torn countries
But what happens in your own war-ravaged body
As the cells of the myelin sheath
Breathe their last breath
And die away and disappear
From the onslaught of the
Bombs of the cells run amok
Killing and destroying all in their hungry path
To what end????
And now, in the safely of your bedroom
You can hide away,
Not so much from others,
Who do wonder why you’re staggering at 10 AM
Or wearing shorts in winter and
It’s just too damn hard to
Explain
The pain, the pain, Boss the PAIN!
Is excruciating when you have to
Let material, like pants, bind your legs
And cause so much pain,
That it is just easier to stay home
Where your FB friends
Only see the top half of you.
The make-up you carefully apply
The lipstick, the eyes done up
Your hair combed, curled and dyed
And they all exclaim –
“Doesn’t she look good!”
But they don’t see
How small your world has become
Your room, the path to the balcony
So you can have a cigarette
And it is a small world, after all…
And who am I to change YOUR world?
To “save” you?
As Jimi Hendrix said,
“I’m the one that’s got to die when it’s time for me to die, so let me live my life the way I want to.”
So as your world has shrunk
From the outside
And you reside in one bedroom
Of a cage not of your choosing
You leave the door open
And your life escapes
Once more
To the playground in your mind
And you dance
And laugh
And are free
And I see your light shining
And the wonder in your eyes
And
There’s a big world in there
So I guess
It’s not really
A small world after all…
Sometimes late at night I think
I can hear the music of your heart
And I know you are dancing
And laughing
And singing
With the Universe
Whole and complete
Just whole
Completely…

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