I’ve been told I’m a chronic pain in the ass
after all, it’s easy to destroy a child in an adult’s body
with past-tense words
and now in the time I’m meant to be at my strongest
chronic has visited me and stayed a long while
on a good day I think; This will not be forever
but temporary has always been a long way off
the doctors love to tell us; It’s incurable, get used to
living like this, hostage to something unknown and strange
as if that’s a normal thing to do
but if enough of us live with chronic illness, it will become normal
and that is not a good thing.
Before this …
I took chances, because you think
I’m invulnerable, sometimes I can fly
health, you take for granted
though I truly convinced myself, I had checked the boxes
right weight, exercise, organic, vegetables, no pre-made meals
(well, this is what I told my doctor, sometimes a couch counts as exercise, right?)
if I ate a slice of pizza, it was a treat with friends
though I like root beer, I never drank it
maybe making up for cigarettes, smoked in my twenties
but I thought if I keep jogging, if I keep living healthily
I won’t be felled, because you ARE WHAT YOU EAT.
A few months before I got sick, I recall
feeling strong, climbing through snow drifts and laughing
boundless energy, working long hours, feeling intensely alive
people saying; you look so healthy, your skin is radiant!
Those are not things people say now, unless
I apply a lot of make-up, to camouflage my fraying edges
instead it is me, who declines invitations
I am sorry I cannot go with you to eat, even though eating out
is the number one leisure activity where I live
because my stomach is ruined and I cannot digest much
I live plain and simple (and boring), like a nun and I am numbed
to the pleasures of wine and sauces and garlic, spices and oils
not recognizing my bloated mid section in the mirror
from the girl who once was told
she had an hour-glass figure, with a wasp waist
could run for buses and catch them in three-inch heals.
I know everyone has their burden
but when you get sick and it doesn’t go away
life becomes a series of scolds and let downs
you find out who really loves you and who harbored an anger
used the opportunity of your downfall, to insert a knife
it is the cowards way of course, but freedom of sorts
for none of us need, that kind of negativity in our lives
there is a blessing in disguise, when you find your tribe
the people who care and know the real you
not wanting to tear you apart, because it’s easy to kick you when you’re down.
But blessings do not salvage, the hours you spend sickening
remembering how you were rarely felled in past years
strong of body, sound of mind, juicing and walking ten miles
everything is turned upside down, inside out when you find
a burnt fuse, at the end of your outstretched arm.
There is no cure, there is no future
when you live, in a jar for the jarring
for a long while, I blamed myself
maybe in part, because someone I trusted told me;
“It is your fault, you must have somehow caused it”
easy to throw stones, at glass houses
I was a glass house, with many windows
break one and I cannot repair it
the wind will come in and make of my space
the sun will come in and make of my peace
Those things that brought me joy, were gone
instead, the regiment of illness strode in and stood firm
you cannot feel passion, when you are sick
ageing in hours, rather than decades, trying to stay above water
it is hard to feel hope
you rely upon the kindness of others
which is hard to do, if you are not used to it
and when they lift you to the light, you promise
if I can recover, I will try ever so hard to never be ungrateful
but with every mercy, is a dark day in hell
those days take it all out of you, like a scourge
the sickening can age you, more than a nightmare
one minute you recognize yourself, the next you are unknown
vulnerability, of not being able to take care of yourself
the expense and fear
your world crumbling around you.
These are things you get used to and when you have fallen
to the bottom and can no longer get up
that is where the truth lies
that is where you can find
your true self and the end of fear.
They tried to tell you that you were insane
making it up, all in your head, something’s wrong with that
crazy lady who pounds her fluttering chest in vain
tries to catch the eyes of doctors, with beseeching side-glance
SEE ME! HEAL ME! SAVE ME! WHAT IS WRONG?
WHAT HAS HAPPENED TO ME? WHY DID I WAKE UP ONE DAY
SICK AND IT NEVER WENT AWAY?
And yes ! Something was wrong with me and still is
not my doing, not my causing, not my dreaming
despite you saying; You bothered us, when you called and were upset
no mercy, no mercy, no mercy, that is not love.
Helped me let go. Don’t hold on to negativity.
Oh doctor, get it outt!
and if you can’t, then give me the key, the saw, the pick
so I may survive myself and somehow continue on.
Am I to label myself chronically ill, or in recovery?
Surviving or dying or all of the above?
how do you define what doesn’t go and doesn’t kill?
Spending all your money on alternative treatments that
don’t even know what they pretend to cure
how do you describe one good day, followed by one in hell?
others won’t understand, because they are well
what I would give to return, to that safe water place
but even if I did, I would not be the same
you live years with a loaded gun to your head, everything changes.
I am not me anymore
I cannot see out of my left eye
I cannot lift heavy things, with my weak foreign arms
I can walk ten miles and not break a sweat despite this and be told
by friends and foes; OH YOU DON’T LOOK SICK
I am an apparent scar of contradictions and pain
I hurt every day, my stomach feels like
something is eating me from the inside out
it convulses and retorts and shouts
“you will never win, you will bathe in pain the rest of your life”
but I will still try
because I don’t know how to give in to enemies, I cannot see
and even as I cannot eat normal food
one day I am good, the next I am dying green
even as nausea, has become my constant companion
and bottles of pills and vitamins rattle in my pit
even as I fight to be gracious in the eye of the storm
and those I thought would stand by me, try to drown me instead
I know there is still a moment
I am well enough to remember who I am
never to find that peace of mind again
but maybe recover to another state of being.
I wake in the night covered in sweat and the disinterested doctor says
“get used to not sleeping, get used to all of this, it is what you must suffer and many others do”
as if it is normal to be like this, as if it is something we should not mention
I will never think it is normal to be hijacked!
I jog into the forest, because it reminds me I am still living, my feet still work
I fight with wilted hands, when they tell me there is no hope
that I should just consign my former glories to a picture album and put
my feet up for a fifty year occupation of sofas and couches and day time oblivion
because THE POWER OF ME can overcome the power of negativity and this I believe
as I see in the mirror a girl who doubts but stares back unblinking.
I have lost my will at times
I do not write as much, I have less energy
the last time I had a romantic dinner was in a dream and I
sleep with a heating pad on my stomach every night instead of a lover
but I still pay my own way and my own bills
I have a pride in pushing back against status quo
DEFYING the prescription of HOPELESSNESS.
they tell me go on disability. Just give up
I am not going anywhere, but to the finish line
by losing everything and having nothing but
the sheer will and dim light of my existence
I can do this without those I thought I had in my corner
because I am stronger than I realized
and this grieves me, as well as reassures me
but I come from a long line of stoic, strong women
and it seems sicker than I am, that we should hate each other
because life, surely we have found out, is fragile
and love is all that makes sense
but even without love I will continue and not
let the flame go out.
Sometimes I ask myself why?
why not just give in? Take the knife, swallow the pill
to oblivion or some non-sign-posted destination
I don’t have children to protect
it would be easy to slip out of this world and its sword edge of pain
but somehow I feel I should protect myself
maybe because others did not
maybe because you defend yourself in the end
when everything else is fallen and you are still
I am weak and tired and prematurely aged into
a hunched over version of myself
hair greying with shock, skin is sloughing off and my
body is tied to the rhythm of a sickness that purges and gluts
I was told this kind of disorder was permanent
but nothing I have found, is ever guaranteed
so I have chosen to ignore this and believe
we can all fight and overcome
even a death sentence
and when we know this
when we are strong for our weakness
realize our tears are just water and salt
burning the frustration of our visiting menace
then, we know nothing can hurt us, more than it already has
and we are free to dream
of a future without so much pain
where death stands to the side and lets us regain
some of our former dignity
for there is nothing dignified in sickness
and you don’t know me when you said I was glamorous
that is the last thing I am
I am beautiful for my courage
beautiful for my fear
beautiful for my survival
beautiful for my defeat
beautiful for my mercy of those who have no mercy for me.
And life is a wax and a wane
life is a torture and a friend
I am the totem of my own branding
I may live in a time where nobody else of my kith and kin remain
and once that would have filled me with pain
now I know you cannot rely upon
labels of safety
it is only by looking into the hearts of those
who stayed by your side when the storm hit
even if it is one, even if it is naught
you remain behind
the tempest cannot roar forever
eventually even agony ceases.
I wish now, to be everything you were not
to love others unconditionally
care for those who are in need
be the change I want to see
I want to find myself
at the end of all of this
I want to tell you, sickness
you do not win
you are just a miasma
I am a spirit with a soul
I will endure you
the me, of me, will remain
long after, to remember her worth.
Before this all began and through it, learned
only the fierce remain
only those willing to FEEL
and not those who run from feeling
with the ease of the damned.