two weeks after being diagnosed with Parkinson;s Disease I was also diagnosed with a rare neurological disease called "Cramp Fasciculation Syndrome". My Specialist, although very knowledgable' seemed thrilled with my disease. He continually asked me to explain what I was feeling physically but I just could not seem to have the right words to make him understand, so I worte it in a poem...
"Chaos"
My life is chaos,
a losing of self
pain is taking control,
accompanied by anger
and tears.
Tears,
I never use to cry.
Crying shows my
weak side.
I don't like feeling,
I'm all outside myself.
My body won't
let me be.
Just moving through my life
one step
at a time
causes my legs to cramp,
my muscle to twitch,
limbs throbbing as if
they've been deprived
of the air they need
to breathe.
Mornings usually full of
spiritual thoughts,
meditation and
yoga stretches
now only bring
self doubt, loathing.
A filling up of negativity
I've fought my whole life
to avoid.
My hip on which I carried
my precious child
screams with pain,
with every move
it travels across my back
in a tightening squeeze
pushing up into my right flank
until my side is on fire.
Reminding me
every second,
every minute,
every hour,
of every day
that my grandchildren
will only be allowed
to walk beside me
not carried by me,
or attached to my neck
with monkey arms.
The stress,
the worry,
the unanswered questions
cause my neck to hurt
and my shoulders to pinch.
My left leg goes numb,
just out of the blue,
a lifeless limb.
The minutes tick on
as my mind
tries to reason
for the fix.
There have been doctors,
and doctors,
questions,
probes,
tests,
drugs,
drugs,
drugs.
I am so tired.
I am no longer myself.
I cannot be myself.
I am lost.
There is something
wrong with me.
Something my body
won't easily share.
It gets so hard,
so hard sometimes,
so hard
to go on.
I miss laughing.
I miss me.
The artist,
the writer,
the lover,
the mother,
I miss laughing.
I am not a lifeless,
pain filled,
middle aged woman
who has to hire people
to mow their lawns
and help them shop.
I do not want my friends
calling me every night
just to make sure
"I feel Okay"
and is there anything the can "do".
I have always been
the caretaker.
It's just too much sometimes.
My mind wanders
strays off the road,
sees that drop off
to no where
offering a way to leave,
to leave this life
of pain.
Yet,
my morals,
my deeply instilled
love for life
keep me grounded
on the pavement
that delivers me home.
But the shadows
grow close,
they're whispering
in my ear.
Jupiterjane