We live in a world
where we are constantly prompted with subconscious social markers and
clues in order to help us behave appropriately and to know what to
expect. When you watch a TV show, whether you are aware or not, you
will know by the way the camera moves, what type of scene is about to
take place. If the camera is watching someone through the branches
of a tree you will know that character is being spied on, but if the
camera moves slowly from behind the tree and just watches the
character from a distance, you will know the character is having a
pensive moment and the imagery suggests they are given space.
When you watch a movie,
the music or sound will communicate what type of emotion they are
prompting from you. The melancholy music or dramatic sound effects
getting you ready for the emotion of the upcoming scene. Those of us
with severe CFS/ME have a sound-track of atmospheric melancholy music
that changes in moments to vintage comedy capers music to coincide
with our daily slapstick routine or shifts to threatening thrumming
bass as we near death, only slowing down to turn back to melancholy.
There is not often
hopeful music, or even a camera panning to the sky to say goodbye,
instead the camera discreetly backs out of the room, us in centre
screen skin looking translucent white, eyes blackened, lying heavily
in bed surrounded by medication having completely given up the
pretence of a pretty room for the practical needs of survival. And
maybe there is a script in the end credits describing our continuing
fight and running statistics on the truth about death and severity of
CFS/ME.
The psychology of
CFS/ME is not like other illnesses. We do not get given a package of
information about statistics and treatment options, the likelihood of
survival and how to better our chance to achieve that nor do we get
to look forward to the sweet relief of death and the acceptance of
having to say goodbye. We do not wish for death, but we wish for
closure, for escape from the torture of uncertainty. Our ultimate
wish would be to hear hopeful music, see a montage of us over the
years in various states of decline and then some miraculous treatment
turns us around and you get to see us building up our strength and
working to get our lives back.
Unfortunately for most,
that is not what our experience is. And what I've realised is I've
grown tired of waiting to hear the triumphant music. That I hate my
emo record player and it's evil addiction to dark whining notes.
What I wish to do is change it, but the ceaselessly moving floor and
my inability to walk properly makes it impossible for now.
So I live my life in
intervals, small snatches of clarity, tiny moments of balance very
rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the
psychology of CFS/ME. We struggle to balance on an undulating floor
that moves to no discernible rhythm, unwillingly swaying to the
atmospheric melancholy siren and wishing to hear a joyous symphony.
