I AM A TOTEM OF MY OWN BRANDING

pexels-photo-573298

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

chaos

the sun will come in and make of my peace

madness.

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

I learned

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

somehow, standing.

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

anything

even a death sentence

even betrayal

even silence

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.

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19 thoughts on “I AM A TOTEM OF MY OWN BRANDING

  1. 57 likes and this the first comment. Do you know the work of Dr Davis Hawkins “Power vs Force”. He was a remarkable man, and uncovered more about our psyche than his books can ever say. There is Dr. Bruce Lipton “The Biology of Belief”… I am not saying they have a cure, that lies only in you. I cannot say where this began, but there was a catalyst. I sense it is rooted in radio frequency, but who can say! Is there a cell tower near you? Do you sleep with a cell phone near you? Where is the wireless router in you home? In your neighborks? Do you live near power lines, are there ground loops in your home because it’s mis wired. Yes you are what you eat, but that is not all. As a man thinketh in his heart so is he … I have always sensed a missing ground. Take your chart to an astrologer and have a deep discussion about its progression. We are energy first, bodies of light. That is not fanciful, it is real, and in another 100 years will be proven (as long as the trans humanists don’t lock away our souls). Hawkins would rate your courage well up on his scale so you are near your escape, MDs give palliative care, healing is an art, for which you are well equipped. Perhaps a trip to Costa Rica to see a shaman, take an inner journey. There is a healing center there, I will find the name for you. Be well and be whole … It is your birthright !

  2. Candice, thank you for writing this, for posting it. You give voice to those of us who live with chronic invisible pain and fatigue and all the rest we deal with.
    (I wanted to write something for the upcoming anthology on this subject but ironically haven’t had the strength. After reading your words it feels like you’ve spoken for all of us.)
    Still meaning to email you. Thinking of you often and still hoping we can meet someday. ❤️

  3. Peter, I don’t know that author but now I want to read him! I read a fascinating book called The Field which I think may be related. When my mother was in my life she told me many times about the dangers of WiFi and I agree w/her and you on this. I went off line and have never slept with a cell phone near my bedroom. I don’t use WiFi anymore, I deliberately did not buy a house near powerlines but what you get from neighbors (they spray Round Up!) is always frustrating. I think I want to know more about this authors work. What would you recommend if I go to the library by way of his first book to access?

  4. Betty. If you can do it by the end of next week I might be able to get it in anyway? I’d really LOVE to see your work there. Think about it? You can submit old work it doesn’t have to be new. Send it to me and I will forward it on? candicelouisa@rocketmail.com – We will meet someday I am CERTAIN of this especially as I intend to move up to you one day – your part of the world calls to me far more than TX ever has. I did write you about the antho on FB but I’m glad you wrote this – consider sending one of the ones you have already written. Plus I wanted to know more about that patch. xo

  5. Thanks, Candice, I do have a couple of old poems – will try to email you later today or tomorrow. And possibly something new this weekend. Plus info on the supplement patches.
    Will be very happy if/when you move up this way! ❤️

  6. Oh Candy… this is such a epic & brilliantly, honest write about the ups & downs, and all arounds of living with a chronic illness. So many of us that are experiencing this struggle have similar stories & feelings. As you already know I deeply identify with so much of what you expressed & feel in this poem. Thank you for this magnificent write & thank you for being you… Love you my friend ღ
    ps- I did make a submission, but had to use a couple older poems. I wanted to write something new (like you brilliantly did),but it’s been difficult for me to get inspired for some time now.

  7. Thank you so much Mark. I really appreciate your reblog. I woke up this AM thinking about you. Pls LMK how you are. I am glad you are around at least. I miss you. Thank you for reading this.

  8. I’m amazed you liked this as I think it went down for the most part like a leaden balloon but I am very glad and heartened that it reached someone. Although maybe you have to have gone through some of what you and I have gone through to really see the truth within. I expect had I never been sick I may have skipped over a poem like this. Maybe the well cannot help but dismiss stories of sickness, for who wants to linger there? I know so many of us have ‘been there’ and I would not have gotten to where I have gotten without YOUR solace and loyalty. I haven’t seen your submission yet but I am SO PROUD OF YOU for doing that. SO PROUD. Thank you so much I think you did the right thing. WELL DONE my friend. I love you Mark. you were the light in the dark who helped me the most and I will always be there for you in equal measure. Never ever feel otherwise.

  9. Thought of you the other day watching GOT – second ep BRUNG IT a bit more didn’t it? Thinking if they knock off Denny or Jon S I’m going to be irredeemably pissed (likewise if we lose another dragon) – like the arc of some of the stories though very much. Was so tempted to text you but thought you might be watching at a decent hour xo

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