Do you hear it?
Relief sounds like
a girl’s slip
a bird’s wing
your eye lashes fluttering
against your blushing cheek
Do you hear it?
Suffering sounds like
cloth pulled by stick across dirt floor
chalk pressed violent into board
fingers opening blouses raggedly
your chest bone protrudes
more than the year before
Do you hear it?
(Inspired by reading Cordelia Feldman’s novel In Bloom, reviewed after this poem).
When the rush comes
questions like: Why are you doing drugs? Are you an
unhappy child?
Do you realize how inappropriate it is?
Bad choices lead to worse choices. Slippery slopes. Killed brain cells.
Those questions seem irrelevant
for, that which you have searched
seemingly before awareness, birth, first flickering
is surrounding you and the fucking magic of it
is holding sorrow so far away
you can’t recall the last time you felt its fingers
closing around your throat in possession.
Yes sorrow
misery, self-hatred, dysfunctional thinking, dysthymia
depression, malaise, disorder, horror, they
have long sat at your scarred table
munching on your best intentions
not to throw yourself from a bridge
just because every day is so painful.
Parents show the whites of their eyes
like distrusting horses being inspected
for cavities and you are the hole
they observe without looking
wondering how they birthed
someone so strange, unexpectedly unwell
did we not take enough pregnancy vitamins?
Was it more like my ‘funny’ uncle and how he never
seemed quite right?
Blessed, tainted blood
that’s not it
anymore than sexual abuse or
quiet pinch of undiagnosed learning disorder
when there are cheery-faced celebrities proclaiming
their cured malaise, even as they grew up
in fire
therefore, it is not
the firing, how deeply you set, how many cracks
it is more the knife of life
cutting you open
silence surrounding before
you knew you were alone
a haunting long before words like
‘intrenched’ and ‘affliction’ were commonly nailed
like scarlet blooms on thirsty cacti.
Sorrow, you were flowing in my blood stream
like an unbidden life, wishing to suck mine out
marrow and all.
There’s only apologies
for not being able to be what you want me to be
grieving for the perfect mess made when I was doing my very best
not to cut myself to ribbons
and as self-hate dances with a wish to
pull hard on the string attached to light bulb
and just blink out ….
music and its phantasmagoric wonder
infiltrates darkness with a tender mercy
potent keys of a piano played on an empty stage
seem to possess a furtherment.
You, who sup at the high seat for well-adjusted
cannot really fathom, aside in dusty theory
the every day battle with spirits resembling
skewed reflection and how when joy arrives
soft and cloudy, she is split savagely
by the very strength of your inner tenency
to plunge headlong, when you want to do
the opposite.
Fate lifted me out of the car gently
like I meant more to him than a one-night-fuck
and maybe thinking back, I was
precious
in that turkish delight moment
softened at the edges by
little blue pills.
If I die in ten years from some malady
will you point your frozen heart at me
and say; “Her bloody drug use killed her”
without recalling
without it
I’d already be nourishing trees
with my life blood.
Will you state: “She was weak because she
couldn’t cope without them”
forgetting, we do what it takes
to stand upright, pulled from the inside
skins flayed on electric lines of penance.
For our generation, for some of us
those who didn’t yet know how to
put words to how we felt
the holes in our fabric
those diminishments
only worsening with perpetual self-reproach
(after all, didn’t we have a roof over our heads?
How the hell could we be so ungrateful?
Do they say that to people with cancer?
Only the smokers I think, we are banished
to the smokers ward if we suffer from
depression, they put us down as incurable
and slightly pathetic and faces turn away
like cliffs beckon our swift feet forward).
I danced beneath strobe lights, proud of reaching
19 and not having taken anything stronger
than weed, my iron will a contrast to
my crumbling will to live, sometimes
it fascinates me. He whispered in my studded
ear; “I know you disapprove of hard drugs but …“
and like a violin played accutely until
you find yourself crying on the other side
of intensity, I saw the futility of holding back
how ‘good behavior’ didn’t work with the model
of suffering experienced daily, another way of
saying it was
fuck it
the pill was bitter like
poison
and returned me someone
I had not met in many years
happiness flooded my bloodstream
I didn’t care it was artificially induced
all moods are, all behavior dictated by
the flow and ebb of chemicals surging
in our amygdala.
Why do some of us fall so far?
When others seem oblivious of
sorrow like it’s a thing to bring out
at funerals and nothing more? Can we really
reduce it to ‘failure‘ and ‘success‘ and affix the
ugly admonishment forever, like kicking
someone all the harder once they are down?
The self-loathing and condemnation
invariably accompanying perpetual sadness
lifted like a shroud and music entered
my blood stream with an invoking joy.
Many years later I read about ‘self medication‘
and thought as a professional
trying to help people who felt
like I did / alone / worthless
how trite labels and ‘understanding‘ in general
was.
I’d write you a book of my foray with drugs
if it didn’t cause you to condemn me
then again
you already have
so why not?
Don’t throw stones
at glass
houses
unless
you’re bulletproof.
Cordelia Feldman writes on WP and has published her first book of fiction In Bloom. She’s a magnificent person and a genuinely beautiful human being. I urge you to purchase a copy.
I didn’t know what to expect when I purchased In Bloom. That can be exciting. I purchased it because I have followed the author Cordelia Feldman on her blog for many years. As a publisher/editor I tend to get high burn out for acquaintance reads but this was not at her behest, I wanted to read In Bloom, because the quality of Cordelia’s writing and humor over the years has often left me astounded.
In Bloom is semi-biographical set-in mid teen hood. Which might seem odd at a time when the adult author is struggling with metastasized cancer since her mid thirties and this has taken such a chunk out of her valuable life. One might not be blamed for thinking she’d write about a later time in her life. However, if the reader has ever had a prolonged battle with their health, they will intimately appreciate the difficulty of ‘going there’ and the positive impact of focusing on other things. In addition, the challenges a writer has to accurately reflect her past self, something few do realistically and Feldman excels at.
Cordelia has in her blog, done a monumental job of focusing elsewhere, she’s ‘bloomed’ in the years since her cancer diagnosis despite all obstacles. Her infectious optimism, her attitude of caring for others even as she suffers, the way she brings humor out of the darkness, and her undefeatable intelligence hook you from the start. With each blog post she refers sardonically to a book title, often obscure, and that quick mind of hers is as agile now as those who have never experienced a days sickness.
Likewise, with In Bloom, a little gem, a veritable Pandoras’s box replete with humor, nitty-gritty mindful observations, completely lacking in self-pity and with so much to evoke and fascinate. Why fascinate you may ask? Many of us can directly relate to being a teen and going through much of what Feldman has gone through, but many cannot. This is both a warning and a true invoking of a time in history and a type of lifestyle for the young that Gen X’ers and perhaps many others, can appreciate.
Just as we can put an album on and suddenly go back in time, In Bloom takes us to the tawdry experiment called youth and provokes some intense feelings about why we do what we do when we do it. For some, drugs are a clear cut no, no path to hell. For others, they’re a rite of passage. My personal take on it is; drugs are a gateway, to growing up and moving on, but for some, a gateway we don’t regret, nor judge.
The club scene of the 90s in the UK was spectacular and for many young things, going out and dancing all night on Ecstasy was the most fun they’ve ever had. If that makes them sound sad twenty years later, well you weren’t there. The clubs had such atmosphere and comradery that it was impossible not to see them as Magic Faraway Trees of their time. It might be like trying to explain to a non-drinker why a drink can feel so good at the end of the day. Or try telling your parents the Sixties weren’t a revolution.
All the proselytizing in the world and nary a judgment cannot convict those hearts who bloomed in that era and recall it with fondness and a little embarrassment. If you imagine ecstasy earned its name through hard graft, and lived up to it, there’s nothing shabby about those Turkish delight infused experiences anymore than throwing rocks at the Beats Poets for their dabbling with the illicit.
Feldman writes hypnotically and with great alacrity, understanding the mind set of the teen to an uncanny degree. Her intelligence as a writer is evident, but so is her sage wit. Feldman conjures a time that has passed but we can all to some extent, look back on. However, this is not all she does. In Bloom isn’t merely a celebration of taking drugs at raves, that really wouldn’t begin to give it its dues. In Bloom is an evocation of a young woman’s experience with mental illness.
Do drugs cause mental illness? We know they can but more often they exacerbate or draw out, what is already there, for chemical and hereditary reasons. We don’t truly know the myriad ways mental illness occurs, just that it does, and for so long, it was judged and condemned without trying to be understood. Feldman attempts understanding through description and succeeds admirably, in her gentle nudging toward insight through the stumbling’s of the newly initiated.
The main character of In Bloom is clearly a composite of the younger Feldman, but she’s also a character in her own right. Her experiences are not mere autobiography, she and her cast of bandits are all fully fleshed out people existing within In Bloom and they make you care about them, despise them, cheer for them. Do not forget 17 is the age mental illness will begin to rear its head irrespective of whether you are downing E or lemonade, although of course, the reaction with the former will be more dramatic and so it is.
I rarely want to stay up reading all night as I used to because I read for a living. But In Bloom was that notable exception, as I feel it will be for many of us. Before being tempted to cast stones and accuse Feldman of glamorizing drug-taking or blaming her cancer on her previous actions, consider the truth. We don’t get sick because we dabble with drugs as kids. We don’t start doing drugs because we read about them in a book. Pain has its outlets and kids know that well. There are deeper issues here, ones that In Bloom cannot speak to, but we all know they exist and we all know life is far, far more complicated than what we see on the surface.
The ultimate value of In Bloom lies in my knowledge that I would have enjoyed this book immensely whether I knew Cordelia as a writer beforehand, or not. Her skill as a writer has never been under question, she has proven her worth time and again with her tapping into the amygdala of her readership. Her intelligence as a thinker on this planet, is beyond refute. I only wish deeply that she were given time to write more, as I suspect, in Cordelia Feldman we have a voice of our generation.
https://www.yahoo.com/news/column-californias-aid-dying-law-100053133.html
The Right To Die debate is one I have strong opinions on. Ever since Brittany Maynard decided to end her life to avoid inevitable agony and suffering and watching her discuss this in many interviews, I concluded that the Right To Die law should exist for everyone, everywhere.
There are pitfalls no doubt. I can imagine nightmare scenarios where people are ‘terminated’ by bored relatives who do not wish to take care of them. So obviously safe-guards must be paramount. That said, I am open to the RTD law be expanded to include dementia patients and those with serious Chronic Illness, including long-term-depression.
That’s murder! You may say. And part of the invariable slippery-slope! But I would disagree. Unless you have been the victim of Chronic Illness and/or long-term-incurable-depression you cannot speak for others who suffer each and every day.
A few years ago I killed a kitten who was suffering. It was in agony, unsavable and its liter mates had died in excruciating agony. It was a Sunday and no pet-store nearby was open to euthanize the kitten. To spare her suffering I put her to sleep myself. It was the hardest thing I have ever done, I didn’t actually think I had it in me (to take a life) being vegetarian among other things. But the compassion for her suffering over-took the fear of harm.
The harm was her suffering any longer and that is how I see RTD laws.
Obviously we have to put into place protections against this being misused. I recognize that many deeply devout folks believe God takes us when we are ready, but I have never subscribed to that. How is suffering in agony EVER God ordained? If a God exists I do NOT believe he/she chooses people to suffer in agony for years on end. Thus for me, that argument is moot.
Without the issue of ‘taking God’s job away’ we are left with the morality of RTD laws. If I see someone suffering as horrific as it is, to consider their dying at my or their own hands, I would want to help them not suffer. If that was their true wish.
In the case of dementia patients, if they sign a waiver now they can ask not to be force-fed and kept alive, but it still means those wishes can be ignored, effectively they can exist for years as a vegetable, and do nothing about avoiding that outcome. This isn’t a pragmatic thing. Obviously our society is going to be destroyed by dementia cases as more and more develop it, but irrespective, this isn’t about convenience of death, it’s about the mercy of death.
Few of us (I know some exceptions) would wish to shit on themselves, not be able to eat, remember, function etc, and lose all dignity and awareness. Most of us would prefer to die. Giving us a way to write this out and have a representative help us achieve this, seems to me, a mercy not a convenience.
The whole subject is heart-achiningly awful and we avoid talking about it for the most part. But we need to think of this. Just recently with Covid 19 ventilation, the question of dying and life has been very pertinent and young people who never wrote living-wills have been in limbo. It is never too early to consider these things because we really don’t know.
When I put my cat of 18 years to sleep it haunted me. Briefly I went back on my belief that RTD was the best choice because I thought; If I can’t handle the images and flashbacks of the catheter being put in my cats arm, and watching him being put to sleep, if I felt that was ‘wrong’ in some way, how could I handle it if it was my dad? Or someone I loved?
Truly I think I am nearly not strong enough to cope with that day. But despite that I would still do it. TO END THE SUFFERING. It would haunt me and yes it would feel worse to me than if they died naturally just as it would have been ‘easier’ if my cat had died naturally instead of being given drugs that killed him. Watching that was horrific and it did feel ‘unnatural’ because it was but sometimes it’s the only choice, and it’s the best choice and even if it leaves us feeling horrific, we should consider it.
I don’t regret putting my cat to sleep. But I regret that it had to happen and I still get flash-backs of the last moments. If I had to do that with a human-being I know it would be the hardest thing I ever had to do. But if I loved that human being and it was THEIR WISH I would hope I had the courage and love within me to do it or be part of it or at very least, support their wish.
Having had chronic illness I know we can be ‘not in our right minds’ and so the issue of ‘how sick is too sick?’ must be considered. Depressed people for example, may be able to be cured, so are they really the right candidates for euthanasia? I don’t know the answer, I only know that if someone I knew had suffered for 20 years and wanted to die, I would find it hard to deny them that mercy. If all else had failed.
This is not what we want to think about but right now, out there, are many people who are in this VERY situation right now and have no recourse to end their suffering. I believe safe laws CAN be made that protect against abuses and I believe at this juncture in our societies evolution we need to consider those things, not to keep our sick numbers in check, but to be merciful to suffering.
The courage of Brittany Maynard has stayed with me ever since I heard about her and followed her story. Some may say that is morbid. I say it is honest. I still think of her, she affected me deeply and opened up this debate. I hope others can get over their prejudices of what they believe others should do and give people a CHOICE. Just like my best friend who doesn’t believe she would have an abortion but believes others should have the right to choose if they want to have one. Such is this debate about an individuals right to choose their outcome. Who can honestly deny that in the face of suffering?
I often think if I live to be old, I will be alone and I fear that very much. I think if it were possible I would choose to end my life simply based on not having enough money to keep going or enough reason and family left to make it worthwhile. Is that wrong? Maybe. But one day that too may exist as an ‘option’ and a mercy, to help those who would otherwise resort to suicide which can often fail and leave awful aftermaths. This is a very sad subject but it’s one many of us will one day face one way or another. I don’t want to dwell on it, but equally, I don’t want to pretend it could never happen.
I think now more than ever, we have learned, anything can happen and we need to be prepared. Taking responsibility for our lives AND our deaths is a responsible decision, and helps those who may be left in our lives, follow our true wishes. I hope I never have to find out, but I believe we should all be prepared for both the best case scenario and the worst. Contrary to popular opinion, taking ones life is probably the hardest thing a person can do, not the easiest. But as this article above states, there are worst things than dying and I would say suffering in agony meets that criteria and forces us then, to consider this subject honestly and with compassion.
What if she’s me? The woman screaming without reprieve?
And what if she’s you? The body beneath the sheets lifted by strangers?
Every time the phone rings, I see in my minds eye, your prone form
fallen, or hurt, somehow
this fear I inhabit is years in coming
your fragility creeps up on us like a wettened shroud
once so strong, you’d take me in your bronze arms and
press me to you where the sound of your powerful
heart beat assured me nothing would erase or remove
your certainty
then the sick hiss and whisker of machines
a tube down your throat, a glazed look, no recognition
slack hand filled with needles, empty eyes void of life
I felt you moving away even as you stayed
gone and still there
a stranger in your face, your expressions glazed
even the taste of your lips changed
as if blistering over from sudden Winter storm.
As time ticks down, we look up
to salvation, prayer and hope when
maybe nobody listens
I stand over you as you sleep
your little bluebird chest rising in dream
I want to
climb on the bed and laugh as once we did
curling around each other in chased game
oh so much joy in one shared heart
when i was your girl and you were my
evening rose
now the dust has settled and we still
scattered pictures, cannot see clearly
all around are shadows and shorn warnings
easy to lose ourselves in fears glory
like gathering a bird who has fallen from glass
stunned and dying pressed in our hands
death on us now, like unsought reflection
glinting, glinting, glinting.
I miss you, the you I knew
better than I know myself
who would turn in her sleep and
touch me without waking
such was our eternal fuse
one into the other, no boundaries
and time is a fickle fellow
taking you and keeping you sickened
welded to pills and paper casts of closed theatres
we stand apart, at times nearly severed
I would sacrifice all to make you well
but i have given everything i know
it is clear we go in different directions
one is the end and you drift like
wind on frigid water
while i continue to swim upstream
i cannot, you see
let go
your bright feathers dull
and still i look up
when birds fly into glass
In the New Year I am going to do something drastic. I’m going to close all my social media down and take the majority of my books/work offline/out of bookstores. The work that will remain is what I’m most proud of; SMITTEN This Is What Love Looks Like (an anthology, 2019), We Will Not Be Silenced (one of 4 editors/contributors, 2018) and Pinch the Lock (Finishing Line Press, 2016).
When I began, I really believed I could contribute something valuable to the world through the medium of writing. I saw many other people trying but I did not know how many and since 2015 I have seen that there is a glut of people all self-publishing, indie publishing, small press publishing, all with the same ‘dream’ of being a legit writer. Mostly wasting hours on social media futilely. I realize 99.9 percent will never be. The only ones who can do it are those on disability, who get a cheque without needing to work, or supported by husband/wife/family or you’re a retiree. If you DO have to work for a living then it’s rare you can put in enough work to even get to the indie publishing stage.
There are exceptions. One of my real friends whom I did meet on social media works full time and is one of the hardest workers I know. She will succeed I have no doubt about it. She goes home from a hard days work and produces consistently some of the best work I’ve read online. People like her are rare. They are one in a million. Others have the talent to do it but it will depend upon if they have the time to make it happen (you know who you are) but the vast majority have neither the talent, nor the ability to make it happen.
When I began writing I thought I was a pretty good writer. When you read some of the stuff online it’s easy to see why I thought that, a lot of it is really poor quality. On the other hand you need to be either absolutely brilliant or someone who is in the know, to get a really big publisher. I am neither absolutely brilliant nor ever going to be someone who is in the know/networked up to the hilt. Even those who everyone talks about as having a ‘good publisher’ actually don’t. They just secretly vanity press pay or exaggerate how much they actually earn. To earn a living wage as a writer unless you are an editor, it’s the 1 percent of the 1 percent.
I don’t want to be an editor. It’s a thankless job and underpaid. I have qualifications and I am going to use those and return to my previous career, hard as it is, it can earn me what I will need to take care of myself in the future. Maybe no job will be different, maybe I will always be taken for granted and used but I want to do it on my own terms. I have always supported myself from the age of 18 and I always will until I cannot any longer. I have never had any help.
Lastly, most of you don’t know but I was recently diagnosed with a very serious eye-condition that means I am losing my sight. I realize I have to adjust NOW rather than when it is completely gone. I doubt I will still want to live if I go completely blind and I have decided if that day comes I will elect for euthanasia as I am not someone who wishes to live as a completely blind person. Especially as I have no family who will care for me. However, if that day doesn’t come or it gives me 20 more years, (which is unlikely) I still need to change my life to ensure my eyes do not worsen.
As some of you know I had battled a serious illness in 2017 which radically changed my life. It was caused by a virus and I am still sick with it but I have learned to live with it and am high functioning despite it not having completely gone. I believe it will one day completely go but it is a long painful battle. I thought that was enough to deal with but in addition to this my mother told me she no longer wanted me in her life ever again. She and I have had our ups and downs but naively I thought as she aged we would get closer. I have always loved her very much even though she was not in my life that much. When she told me this during my illness, effectively kicking me when I was down, it was the last straw. She knew she’d hurt me as badly as she could ever hope for. She succeeded. To protect myself I accepted what she said and have tried to get on with my life knowing she will not be part of it. It has hardened me and I am bitter about it but I will never be as cruel to someone else as that. I will never succumb to cruelty to deal with my own pain.
On a positive note, I am stronger for all of this. But having the eye sight issue on TOP of all of the above, was just too much. I do have it in me to change my life. I have decided to once more change my life. I am not going to carry around the rejection, fear and grief of her hate of me or anything else, anymore. When I began my blog/writing in 2015 I felt it was a chance to try my hand at writing. I don’t regret doing that but I see now realistically I have to move on.
If you know me, truly know me, and have my number and my address and we talk, then I am bound to call you real friend and will keep in touch. When you get sick you realize who your friends are and it is a good clarity. For those of you I call friends thank you for your friendship and I hope we keep in touch. We may not as we may no longer have anything in common but I wish you all much success.
SMITTEN will be my last personal project in the publishing world for the foreseeable future, although I have also been involved in YOU DON’T LOOK SICK and hope Indie Blu(e) recognizes me for that when it is published next year. SMITTEN is a wonderful ending to this chapter in my life. It is a testimony to the talent of women when they come together. Just because we are minorities doesn’t mean we support each other and lift each other up. I hope projects like SMITTEN help future women do JUST THAT because THAT is what is needed. We need to be good to one another! To support one another!
I want to personally thank the following whom I have met on WP for their loyalty, friendship, goodness and inspiration. I think you are incredible human beings; Mark. Eric. Derrick. Bob. Crystal. Erik. Jane. Karen. Raili, Rita. Susi. Anthony. Laurie, Tony. Nicole. Tara. Helena. Philip. Sarah. Tremaine & Monique. Thank you to Christine and Kindra for letting me work for Indie Blu(e) I really hope all the work I did helped and you succeed. Rita.
RIP Natalie Scarberry you are loved.
Thank you to anyone who read anything of mine. I appreciate you. I wish you only the best.
Candice Louisa Daquin
It doesn’t take much to knock a bruised fruit to the floor
watch it split apart like rotted glass, shards of damp skin in slow motion
try as I might, I AM that bruised fruit
try as I might, I cannot seem to recover myself back to where
once took for granted, the feeling of wellness
it doesn’t help when someone you loved abandons you
in the middle of your darkest hour
things like that aren’t supposed to happen
people who swear allegiance and loyalty aren’t meant to
be the ones leaving your side
such is the hour and fickle fan of illnesses devour
at least I know I’d never treat someone, that poorly
despite this and because of it, healing is slower
though I suspect anything less than fire would be
I didn’t know these things beforehand
the un-annointed do not possess future perspective
to see how illness strips your childish faith, cleaves you
bare and gasping
where family didn’t need to see me, even as I spent weeks in hospitals
it cut me to the quick, but it wasn’t the first or the last
maybe preparing the groundwork for your deepest cut
they say you get used to it in time
I never have
just as I never have truly understood the cruelty within some, who profess so hard to love
now, I am a changed person
I cannot make plans like I used to, thwarted by my body, haunted by ghosts
my illness is like a cobra, she stays quietly in the leaves
rearing up when I least expect or when I want most to escape
her possession of me, the way she knows how to tickle fear
with just enough venom until I am on my knees
I am sure some would say, this is therefore; psychosomatic
that it what they tell all women of hysterical turn
I saw in your eyes when I told the horror; your own disbelief
until doctors produced the proof, you still wondered
it became apparent to me, just like with sexual assault
being believed is paramount to recovery
alongside having faith in ourselves
I did not do a good job of the latter
finding myself more alone than when I started
and I thought I started pretty alone
I know I am a survivor and I was not destroyed
yet it feels like I was
when I look inside myself and find
so little left, a house without windows
it was only because of you, I kept trying
I told you that, I said, you were holding me up
when you let go
I fell to a place I did not know existed
I wanted to ask; Couldn’t you have just waited
long enough to see me through the worst?
but you wait for nothing except your own need
I had to find a way to stand even as everything crumbled around me
which is the biggest test I ever had and I failed it
I failed it again and again
walking through the lullaby of desiring to die for so many reasons
not least, the never-ending dance with sickness and pain
but somehow I did not die, I turned instead to stone
when people say I am strong now and ask; How did you get through it?
I don’t tell them; I am not through it
I still lurch and shake in the throes of unnamed demons and at night
I feel like an arythmic god has taken me and is spinning me
on high-speed like all my parts are made of jello
I want to ask that god; what is it you are trying to shake loose?
surely you know by now there is no more fruit left
not even the rotten kind
that fell and split and sunk into earth, a long, long time ago
it is only me remaining now; leafless, without sturdy branches
I cannot rely upon myself, I cannot rely upon promises
no longer a young, untouched tree with green shoots
I am damaged, broken and hobbled, by this specter and the unknown
as much as by those I knew and trusted
asking why to the imploring void; why are we stricken down?
to what do I owe my continuing? Even as it is, insubstantial
can they see in my eyes, when I pretend, I am trying not to gag?
my appetite spirited away by the scourge and never returned
I would die of hunger and not know it
were it not for some strange determination
I don’t know where that comes from
but as I stand, it must be a place within me
does not give up, as she did not, all those years ago when
the flames licked the top of my house and burned, everything I knew to cinder
I am not like the rest of the world; stronger for my poison
nor am I able to disguise my scars
if I were asked what recommended me; I could not answer
I would probably open my mouth and howl
because you can reinvent yourself, a million times it seems
I am just one incarnation, coming apart at badly mended edges
you, who are able to vault life in gentle sprint, must mock
I am after all, just a fallen fruit, lasting as long as she can
in imperfect, bruised skin
Before
is a color I cannot describe
a place I don’t fit into anymore.
Even if I am restored
things will be changed for good
for most of us there are times
that shape our marrow
could be in the form of torment
maybe sorrow, sometimes joy
often the hardest times leave deepest imprint
perhaps it shouldn’t be that way
we should rejoice our luck a little, usually too busy enjoying ourselves
to leave permanent mark or maybe, challenge speaks louder than mirth
it is easy to accept a good day like a hot bath
than deal with a bad and hollow foe
that’s when our quick is sharpened,the story of our lives written
on the tip-toe of endurance
and what if we do not want to endure?
too bad, shit happens, legs break, minds crack
we’re going to end up there at some point
better waterproof our leaking sides best we can
the ocean isn’t a forgiving mistress.
When I fell, my mouth filled with salt
even then I didn’t know how far torment, reached down
it was a well, beneath the sea
a second drowning
for those who long to be free above ground
shackles of the merciless kind
only then I wondered at the strength of others
enduring from such an early age whilst I
ran long in the garden, unawares, chasing butterflies without a care
thinking I knew real pain from a momentary hurt
I knew so little
just a moment ago and a life time apart.
I am a twin of my previous self
we stand on different sides of the same coin
I am submerged, she is still, basking in the glow of a harvest moon
sometimes I look over at her and feel such envy
anger for my lack of appreciation when I, was her
but you cannot lead a horse to water
you cannot teach a child what she must learn
getting stung on the principle, she discovers through pain
it wasn’t in my thoughts that I should be
the girl on the other side of the echo, pleading to return
I don’t know if I will be permitted
but should I ever, walk again without curse
it won’t be as the same person, but a mixture of two
once you’ve seen yourself and begged for mercy
everything alters and everything stays the same
it’s up to you to be mindful of what you learned in that maze of pain
I learned what we think of as hardship
is often just everyday life
what we believe is suffering
can be comfort compared to other lives
when we don’t think we can change
then we aren’t given a chance, we know we should have
it is in diminishment we find elucidation
it is in horror we see truth.
Let me back inside my life again
and I will not be the girl who, took the easy road
for she now knows, just how deep anguish can go
it is in the tangle of the briar
and the wormwood of old trees
whispering advice never heeded
by the youth who believe themselves free.
Before
is a color I cannot describe
a place I don’t fit into anymore
anguish
is a selfish emotion
and a raw cry
made from the belly of the beast and all those terrors unseen
something honest and hardly admitted
kept behind fan and sleight of hand
it is something you hide for fear of being told;
do you only think of yourself? Are you aware others have it worse?
why can’t you just GET A GRIP!
You know all this just as you know
you can’t take one more minute
one second longer
staring at now familiar nightmare
feeling it turning you inside out and back again
(as if jaws were attached to your innards, pulling like a lover would)
anguish is an exhaustion
hunchbacked and ready to tear its own eyes
where if you could you would
run away from yourself never to return
where if you could you would
S.T.O.P.
where if you could you would
scream and never quit
until either your heart refused to beat or
something changed permanently
O the salve of darkness, shrouding such horror
how you have begged for change, change, change
please make it BE ANYTHING BUT THIS
and much as you did, nothing ever would
ease up and chill out, letting the prisoners out in the sunny yard
NOT THIS TIME or so if felt when again and again
you returned to
anguish
who is not definitely no
friend
but the enemy you know better than you ever wished
dangling by garter
over an old dunking pond
the shape of witches still burned
screaming in treeline
Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.
I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.
I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.
You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.
If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.
I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?
It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.
That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.
You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.
Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.
What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.
The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.
I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.
I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.
Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.
It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.
If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.
First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.
I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.
Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.
I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.
Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.
So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.
Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.
I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.
That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.
My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.
If you’re reading this and you feel hopeless, know that you are not alone and there is hope.
TheFeatheredSleep 