My journey into disability and profound illness: a poem

 My journey from wellness to profound disability

Has been complete for many decades.

It has forced me to accept the frequent repeated emptying of myself,

Captured by paralysis that stultifies my physical life

As it steals away my most precious hopes and dreams.

Into this distorted self, this frozen, statuesque body,

I have found a sense of freedom to survive

And more than this, soar.

It feels like I am in a box, trapped within a box, trapped within a box…

The Russian Doll has nothing on me.

Despite the physical entrapment,

I feel strangely, internally semi-fluid.

Here I am a free poet, a deep thinker.

I touch the stars with my mind.

I am coalesced with the whole universe.

I am me in all purity of being.

No boundary here can stop my soul

From soaring with the stardust,

Across the midnight sky

Nor keep me from plunging into the deepest ocean,

Searching for sparkling treasure.

Here my creativity is unleashed,

My mind unfurled to float where it will.

The bizarre nature of my life continues,

Whilst I cling on to my essential being.

I choose life and all the freedom my spirit is.

There is a unique insight that comes

When literally no plans are possible to make,

For No direction is known or knowable.

The future is impossible to predict

Or channel in your own direction.

You are at the Mercy of freedom, in it’s truest sense,

You live eternally in the now of the present moment.

It frees you from the expectations of others,

That would bind you away from your own unique presence.

Your life shines bigger, brighter, expands,

As you realise more of your self,

For that is all that is available to you.

Your life, your breathe, your environment

Becomes sharper, cleaner, more lovely.

Time is slowed.

Not knowing if you will be able move,

If you will be able to eat,

If you will be able to think

Or speak

Or remember

Or not,

If your pain will be off the scale

Or higher still than that,

You cannot be anything but present to yourself.

There is a certain freedom that comes from this,

For if you  float in a state of silent, unmoving, empty bliss,

Where nothing can bombard you,

Peace, strangely, comes to reside in you.

In the oddest of ways you become free to not worry,

For nothing is possible.

You cannot feel helpless

If you have forgotten all the things

That should have been, could have been

Or even definitely are important.

The smallest details come into focus;

The song of a lone robin, sitting high upon a tree top,

Trilling to its hearts content,

The gliding Red Kite’s beauty, soaring overhead,

Fills the vast, empty skies with its awesome grace.

The incredible discovery,

That a tiny red and black spotted ladybird is making a home

In a hollowed out stem

Fills you with unexpected happiness.

Stillness and beauty

Become everything you will ever need.