I have always had a nightmare of being incarcerated
for something I didn't do. Maybe it was the goody-goody two-shoes, teacher’s
pet, predominantly rule abiding girl. The fear of being in trouble and worst
yet arrested freaked me out.
This fear intensified as I travelled the world and
experienced different judicial systems.
Maybe, it was visiting the prison in Malawi where I
sat in the dirt with the incarcerated women and their children. Or was it being
patted down by heavily armed guards as I entered Indonesia?
Maybe, it was the time the big year 6 kids
threatened to “dob” on the little year 2’s at lunchtime for something we hadn't
done. Or is it the countless crime shows I stream on Netflix?
Are my fears irrational? Probably so, I am a seemingly
normal law abiding individual. (Or so I’ve always thought!)
Yet, I still have a fear of being trapped.
Imprisoned. Stuck.
Last night, I dreamed of running…so free...pounding
the pavement in whatever direction I dreamed. Yet as I woke, I realised I am
imprisoned. No chance of running and feeling the wind in my hair once
again. Incarcerated in a body for something I didn't do. Stuck. Trapped. No
chance of parole. No release date in sight.
I have Myalgic Encephalomyelitis (commonly and
annoyingly also called Chronic Fatigue Syndrome) and Fibromyalgia. And life
with these diseases is a prison sentence.
Condemned without doing anything wrong. I was the
fittest I had ever been. Eating well. Exercising daily. A busy day in the
classroom. A social life. Committed to my church and living out my faith.
Yet, it struck me down. It arrested me at my prime.
30 years of age. A virus that lasted a term.
Fatigue, pain, nausea, and brain fog, that now over
four years later hasn't left.
I am under house arrest. Not enough energy to leave
the house. Not enough energy to have a shower. My bedroom walls have become my
prison cell. I know the intricacies of the cracks and marks that cover the
roof. I mark time by the sounds outside. The soccer ball being kicked against
the garage across the street, pounding through my head, lets me know that
school is yet to start. The light streaming in through the window that I yearn
to feel on my skin.
This is solitary confinement. A disease that no one
understands. A disease that is so much more than tiredness. Fobbed off by many
medical professionals. So many unanswered questions. A disease that you are
walking alone.
No escape is in sight. I could run. I could try and
escape this body...and occasionally I have. I have pushed through and tried to
live the life I once knew. Yet, the punishment for that is worse. The torture
and pain that follows is unspeakable. You are trapped in a body that makes you
worse with every single thing you do.
A body that feels tortured. The pain engulfs all
your senses. I am being abused by my own body.
The meals are awful. I have no energy to cook. Relying
on others, or pre-packaged meals. Or being reduced to specialised diets so
bland that eating lettuce is as exciting as it gets...plain iceberg that is,
nothing fancy like kale or rocket! Though, regardless of the quality, some days
there is little energy to even eat.
No stimulation in this prison. A brain that is
fogged. Reading a simple book becomes a challenge. Following a plot in a
television show is impossible. Left lying looking at the walls.
No funding goes into this prison. Welfare payments
don’t even cover the medical expenses. Forgotten by our welfare system.
I have no release date. I am in limbo. This disease
has no cure. There is little research. There is a denial that a problem exists.
There is no investment in these lives. No investment in my life.
The desire to escape my body and run away from it
is real. The passion I still have for teaching hasn’t waned. My faith and hope
is stronger than ever. Yet, my reality is this prison.
ME/CFS is a prison sentence. It is estimated that
well over 100,000 Australians are facing this sentence. There is no parole.
There is no release date in sight. It can leave you without hope. The research
is only starting to make a dent in understanding this disease. On May 12th the ME/CFS and Fibromyalgia International Awareness Day, may you stand up, raise
awareness and run for those who are imprisoned in their own bodies because for
some of us we may never be released from this prison.
