If Only They Could See

If only they could see
What our life is like
Moment by moment
The struggle
The torment
The not knowing what to do
The not knowing how to get through
The fear
The uncertainty
The severity of illness
The torture of everything normal
Causing hurt
Physical harm
Tears
The blankness of cognitive dysfunction
The sheer emptiness of mind
The horrendous never ending ongoing continuum
of paralysis and near paralysis and paralysis again
Of numbness
Of muscle collapse
Of intense overheating and sweating
Yet all the time with frozen feet and hands and nose
The impact of noise and vibration
Not just inconvenient
Not just irritating
Not just painful
Not just tormenting
Not just paralysing
Not just numbing body and mind
Not just thought stopping
Not just completely unutterably incapacitating
But literally fragmenting
Deconstructing
torture
That rolls over and over again
from moment to moment
Never knowing when I will drop
Fall over
Collapse
Cry in agony
Scream with irritation
Become instantly frozen
For hours on end
Even thought put on hold
Never knowing if I am going to shake
And shake and shake
My head and neck, my arms, my legs,
My whole body
Even my guts tremor
My stomach swells and paralyses,
Hours of breathlessness
Hours of not eating
Pain and pressure everywhere
Not knowing who to ask for help
Not knowing where to turn for sound medical support
Not knowing how to access the simplest ordinary thing
That everyone else takes for granted
If only they could see
If only they could know
If only they could accept
If only they could empathise
If only they could stand beside us
And weep with us
And act for us
If only they could understand the infinite need
for flexibility and knowledge
The total need for care and support
The subtly of help required
The agony of being with someone so noise sensitive
That the person who loves them is causing distress
Just by breathing next to them
If only they could understand the pain of physical contact
What it is like to never be touched anywhere
without flinching and shouting out in anguish
What it is actually like to experience that uncertainty and continuity
for every moment of twenty years
The noise, the light, the food, the chemical sensitivity
Every single normal thing a pain or a nuisance
Or a hurt or a harm.
If only they could understand and care enough
To really show they have even some tiny inkling of our life
Of the need for isolation
Of the intense and complex
difficulty and effort
of living and communicating and connecting
Of the necessary separation from everything
And every one
that invisibly endangers and is catastrophic
To my reality
If only.......
They could see how they fail us
How careless in fact they actually are
How deliberately ignorant
They chose to be
If only they would
If only they could
Truly open their hearts
And minds
And know how they have failed us
For decades......
Blaming us
Demanding of us
Persecuting us
Expecting things from us
Excluding us
Lacking sensitivity towards us
Being hostile to us

If only they would change
And show they see the truth
But of course they do not
So nothing really changes
Because every exchange
Is still built on a lie.

Linda Crowhurst


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