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Faces of MH are stories about people who lives have been changed by Malignant Hyperthermia. Click the links below to read stories of people whose lives have been changed by Malignant Hyperthermia and to add your own.
Views and opinions expressed on this page are that of the individual telling their story and not from MHAUS.
Please enjoy this poem provided by Melissa Domiati. This is a unique description of Malignant Hyperthermia from the patient experiencing the episode.
Two lives - Melissa Domiati
I suppose I've had two lives
maybe even more
yet now I think of times
after I died
rather than (my life) before.
The last day of
(that life before)
began like others
packing lunches
giggling, chores
wiping faces
tying shoelaces
ironing uniforms.
Car filled with chatter
and the scent of
melting moments
just baked,
warm dustings of icing sugar
melted butter on paper doilies.
Anticipation
running races
excited faces
routine of kisses
on warm cheeks
sorry to miss your race
run fast
good luck
I love you!
See you soon.
Operation.
Hesitation.
Routine procedure.
Apprehension.
Removing wisdom
teeth I don't need
wisdom handy sometimes
I hoped they wouldn't take all of mine.
Wheeled in
by Carol smiling
with her sunflower cap
on a trolley like at the shops
yet flatter
swerving swaying
stainless steel shining
pushing fear from my mind
gown gaping at the back
hoping
no one can see my behind.
Sterile smells
crept up my nose
down into my throat
white walls
a ticking clock
tubes
blur
slur of words.
Metal implements.
Cold sensation.
Woozy dizzy
boozy giddy
falling
gone.
That way that only drugs
can
pull
you
down.
You are not to wake up.
Not to pick up the girls from their carnival.
Not to drink tea.
Not to share the biscuits on the bench.
Oblivious
to the flurry
hurry
of panicked doctors & nurses
whirling dervishly around
my half dead body
my vital signs
faded
I curled into a hard knot
Foetal.
Mortis.
Heat.
Muscles melted to fluid
then rigid
only bone left.
Malignant - deathly
Hyperthermia - overheating
2 words
You would never have heard
if you didn’t react
Giving me the chance to take you away
It's too late to turn back
It's the thing you signed
before you went under.
You thought it wouldn't happen to you.
Police cars screamed
driving from towns
all around
a car chase
a race
against the clock
to bring Dantrolene -
a word I'd never seen
before
my antidote
my saviour
if administered in time.
Angels appeared
in the form of the flying doctor
helicopter
they flew my body
alone
wrapped like leftover lunch
in foil to keep me cool
mind unaware
if the kids had finished school
for the day,
I was flown away above the clouds
missing all the races
no rush for parking spaces
landing on a hospital rooftop
Darkness
pervaded my system
Inwards
I shrank
I felt
low
flat.
Heavy.
Sunken to the floor and below.
Antithesis of light and weight
I was pulled
Wrenched.
Called,
cajoled
to Death.
Come to me now. This is my command.
Not a request, Your presence is demanded.
Held hostage
in this tunnel
of hazy hues
a vacuum cleaner hose
a funnel
wide
narrow
writhing like a serpent
with piercing yellow eyes
spirals of thin lights
distance crawling
closer sprawling
pulling
willing
You must come to me
It is your time.
Gentle
easy
oh so pleasing
to just blend back
to relax
into the pulling
like a tidal rip
of seduction
suction
Oh just take me!
Slipping
tripping
simpler to submit.
Melting
just moments away
from oblivion
too tired to stay
the lure of lightness
lifting me
swiftly
to ultimate rest.
On my left he sat
as if on a chair
but with legs crossed
how he sat before
Cancer took him.
His words were calm
clear without fear
as if through a microphone
thin yellow fingers on my arm.
You must not come
It is not your time
Little sister
you cannot follow me
Brad spoke in a whisper
The pull towards him
was magnetic
that lifetime-long year since he left,
a family bereft.
His love
flooding me from above
I wanted to follow
him to quench the hollow
insatiable thirst,
the pull towards never-
Never coming back.
Death demanded again.
I chose not to answer.
Suddenly
I remembered.
Life.
I was strong enough to fight.
As if waking from a dream
pierced by a fierce
determination to stay
with a lion's roar
I called to my daughters
eyes teeming with tears
voice screaming with fear
I turned towards darkness
climbed
crawled
fought
the long journey out.
I awoke from sleeping
to beeping
light
white
days had passed
my mouth forced open by a tube
that was breathing for me
I could not speak
even with my hands
nurses ran to me
Peering wide eyed
Concerned
Calming
Cautious
Don't let my parents see me like this
They can't lose their last child
I thought I was losing my mind
I tried to sign,
I can't even use
the language of the deaf
I thought
distraught
my arms didn't work
I tried with all my might
no muscles on my bones
a skeleton
a scary sight.
My daughter’s fair faces
filled with fear.
widest eyes
searching in sunken spaces
looking for traces
of their mother.
Missing me.
too scared to kiss me.
Too short to climb up the hospital bed.
Them trying to be brave
as if next to my grave
breaking pieces of my heart with each word.
Other people washing me.
Fed by a tube.
The man in the next bed
died one night
they closed the curtain
wheeled him away
on a trolley
like in the shops.
Somedays
I didn't want to learn to walk.
I already did that as a child.
It was too hard.
I felt sorry for me
wanted just to scream.
To cry
To hide.
Wheelchair walks outside
would terrify me
going out those safety doors
into a world where smokers huddle
throw rubbish on the floor.
I wanted to curl back up
in the sanctity of sterile
where people were kind
and I was a novelty
to have survived.
Hours turned to
lonely days to
weeks to
a year
before I learnt to
properly walk again
the pain
of growing one muscle at a time
tear
repair
and tear again to grow
so slowly
was a new routine
for me
that seemed
to be
mine alone.
I now stand strong
Long love filled life ahead
Many years have passed
(this life after I died)
Is a blessed one
my girls are grown
adults of their own
who cared for me
when I couldn't care for them.
I'm grateful I'm alive
I now cherish the time
(in this new life)
after I survived
maybe more
than I ever did before.
(We all live so many lives... the best one starts once we realise we only have one, the one we are living in right now, Melissa Domiati ‘Flowers from the Farm’)
https://mybook.to/flowersfromthefarm - Amazon link to poetry collection
Podcast: ReachMD
Episode: Navigating the Crisis: How to Diagnose and Treat Malignant Hyperthermia
Click on link below to hear the Podcast:
Navigating the Crisis: How to Diagnose and Treat Malignant Hyperthermia