Category: Book – FSHD (Facioscapulohumeral muscular dystrophy)

A PDF booklet in progress … download will be available soon at NO charge!
FSHD (Facioscapulohumeral muscular dystrophy)
caught me totally off guard …..
~peace out~

like “deal with it” ~

out of the blue
the doldrums of life with FSHD1
were serenading my disposition
into its rhythm ~
as I stirred from its lure
I quickly tuned my psyche
to a more lively composition ~
the playing of music
much more
familiar to my ears
a ‘jam’ so to speak
which got me rockin’
to the beat of life’s band
suddenly ~ I
how do you say it ~
‘bust a move’
yep ~ I just danced
the doldrums
of life with FSHD1 away ……
seemingly a lapse
a temporary delusion
I guess some sort of
out of body
mental type experience
that somehow my WILL
or state of mind
makes all things better
~ FSHD1 though
collects its toll
whenever it wants
without notice or remorse
any time ~ day or night
a whole lifetime …..
it ain’t gonna disappear
with some mind over matter
hokey pokey shit
like “deal with it” ~

just saying ….. ~peace out~
Words by ~Keith Alan Hamilton~ (~KAH~)

mystery of me

do you care to explore
beyond my physical
appearance
sculpted by FSHD1
and then
attempt to learn
the essence of me ~
hear the rhythm
of my heart beat
feel the warmth
of my
spiritual being
if not …..
you are not the first
or will be the last
of those who failed
to contemplate
or fell short in their
shallow quest
to solve
the mystery of me

just saying ….. ~peace out~
Words by ~Keith Alan Hamilton~ (~KAH~)

bewitched

I have walked on the road
of dead wishes….
felt the moment of
drunken hearted despair
absolute rejection
despite the humble
experience called love ~
who has the courage
to withstand the wake
of my journey
slowly being diminished
by FSHD1 …..
seemingly
only the strong
and daring
to be bewitched
by the full moon
of my aura
and then
without hesitation
fully and honestly
be willing
to walk hand in hand
through the ethereal
mist of our
steadfast existence ~

just saying ….. ~peace out~
Words by ~Keith Alan Hamilton~ (~KAH~)

~whatever~

life of late… has beaten and bloodied
my body ~ my spirit
as if I was being prepped
for offer to the gods
on the alter
of sacrifice ~
a fated victim….. for some
ancient Aztec ritual

life ain’t been easy
I’m so…. tired ~ not of life
my want to live
but the fuckin’ bullshit
the day to day crap….. tryin’ hard
to pull me down
drag me through ~
the cesspool
of melancholy
that sewer filled
with the waste of pitiful souls
given over to hopelessness

~whatever~

I will rise up….. again and again
my body ~ my spirit
despite being beaten and bloodied
I shall overcome the struggle
spit in the face of sickness and death
trial and tribulation ~ doin’ so
triumphantly
and jubilantly….
to live on and on
~ fuck off FSHD-1

just saying ….. ~peace out~
Image & Words by ~Keith Alan Hamilton~ (~KAH~)

I live as ME with FSHD

no one feels my pain
knows my sorrow
has experienced
my joy
understands my bliss
as I have …… ME

I live as ME with FSHD

I can spiral down
like a leaf ….. falling
to the ground
from a tree ~
I can see
my mind explode
like the birth
of a new star
a speckle
in the universe
amid the unfathomable
without notice

I am ME
uniquely I fly
like the butterfly
through the meadow
I am ME
uniquely I crawl
like a worm
along the dirt
in the scorching sun

no one feels my pain
knows my sorrow
has experienced
my joy
understands my bliss
as I have …… ME

I live as ME with FSHD1

just saying ….. ~peace out~
Words by ~Keith Alan Hamilton~ (~KAH~)

indeterminability of FSHD1

2016 Richmond VA Mararthon
The toll of FSHD on my arms and shoulder area is noticeable as I cross the finish line. 2023, I can only walk short distances with a cane.

not unlike
the indeterminability
of when one’s death
may occur
no assurance
can be
offered
for FSHD1
as far as a cure
nor can the gods
of medicine and science
give advisement
to those afflicted
how quickly
the body’s muscles
will waste away
as well as
the seemingly
not noticeable
~ chipping away
at the mobility ~
strength ~ energy ~
and psyche
of its victims
~ yet
devilishly making
them aware of
the work at hand
with chronic pain
and fatigue
as a constant reminder

just saying ….. ~peace out ~
Words by ~Keith Alan Hamilton~ (~KAH~)

FSHD1 ~ mutation

FSHD1 ~ mutation

a genetic disorder
the sealer of fate
at conception
seemingly
defiant in behavior
with a mind
of its own ~
besides
chronic pain
and fatigue
with no
known hope
of cure ~
it withers away
body and spirit
of the chosen victim
at this
indeterminable
pace
that robs
away
any small
comfort found
in a probable end

FSHD1 ~ mutation

just saying ….. ~peace out ~
Image and Words by ~Keith Alan Hamilton~ (~KAH~)