“There is no activism without despair, no despair without hope. Despair can be as powerful an engine for change as hope.”
Finding Hope in Despair — Borderless
Finding Hope in Despair — my article in Borderless
Tag: #chronicillness
reminding themselves they can still fly
Only so much can be said of birds, or landscapes
yet grief? Grief is a world incapsulated in a tear
held to the sun and magnified, its kaleidoscope of color
without end
and while you may see me sitting at this table
with dried flowers catching wan Winter sun
my face a careful study of emotion beneath surface
I am actually at this very moment
lying on the unwashed floor
feeling cold tile invade my pores
just like the virus who crept into my stomach
changing everything like zealous house cleaner
see, on the floor I can curl up like I did as a child
pretend I am a dragon again, where ageing and its horrors
or just the spite of unbidden sickness
will not come for me, because I am no longer real.
The sun light will fade and with it, shadows come
reminders of our ephemerality
a dance with what is and what is no longer
the ghosts of my grandparents waltz beneath pear trees
their necks bent to dark skies, mouths slack with amusement
I thought then, nothing could disturb the fabric of the world
because youth told me so
and lies were easy to sew
delusion, such a merry friend
now it is not as easy and like them, my mask grows weary
often wishing to climb into bed and read
stories of others who have lived and died
sitting at tables, lying on floors, looking upward, open mouthed
finding ways to express the horror and brief respite
of coping with pain
I so admire those souls who laugh
though I suspect sometimes they simply do not think
of how things really sit
and that’s all right
because there’s no one way
of getting through this
the birds, maybe they know other means
perhaps that is why they migrate and it is has
less to do with warmth and more to do with
reminding themselves
they can still fly
(Expecting To Fly, by Buffalo Springfield, one of the best songs of the era https://www.youtube.com/watch?v=hzMl0-bhNcM&t=25s)
WHAT WE VALUE
Our society worships entirely the wrong animal, venerating them and reducing others to ash.
The news recently devoted a good portion of the sports coverage to how much money certain sports figures were going to be paid for kicking a ball across a field. And this in a time when our jobs are dissolving, our society is being wrecked, our economy may be irrecoverable and certain industries will cease to exist en mass. Put simply, there will not be jobs to come back to folks but apparently we still need to pay these guys billions for their service to humanity?
I cannot understand how ANY society and how any of us can tolerate/accept a sports figure being paid anywhere NEAR that sum for what they do when those who really do jobs worth paying, are dying in droves because they are not receiving enough personal protective gear to protect themselves.
When did we start paying someone to kick a ball millions and a nurse who saves our life, hundreds?
What’s wrong with us?
If I were an alien observing our planet, I would seriously wonder if we all were crazy in our assessment of VALUE. What we value. What we do not. If nothing else, Covid-19 has given us a chance to see this once and for all and try to do something about it.
We have marched for Black Lives Matter during this time because it was over-due and our raw emotions on the subject burst out of their polite shell and filled the streets with ire and a desire for equality but how many of us really want equality? Not all of us that is for sure, look around and you can see it in every facet of life, a desire to be above someone else somehow.
We still routinely under-react and permit by our inaction, serious hideous crimes like rape to go unpunished in this country and others.
It’s the year 2020 and we still think inequality for women is acceptable in some forms and fashion. Let us not forget what Maya Angelou said about wanting to vote for a white woman over a black man. She said – women were the original oppressed group, thus we should work backward until all oppressed parties are equal. I agree with her.
We still think hate crimes against Jews and telling Jews that Israel should not be their country is somehow acceptable, despite those Jews having descended from that country. Would we say the same to Black People about Africa. Of course not! So why do we say it to Israel? Because of the Palestine Question which Europe in particular has decided to side with, uncaring of the history of persecution toward Jews and their right to have some land of their own. Of course we shouldn’t persecute Palestinians either and of course, Israel has made mistakes but it’s now about what optics politicians choose and what side of the story is half-revealed via inaccurate news reporting. It’s essentially about which side looks right to support? Because Trump supports Israel, most left-wing supporters are against it. Yet it is not that simple and never should be. Lest we forget our history.
We still think homosexuality is unnatural and abhorant and that being queer isn’t natural. We don’t say it out loud because it’s not popular to say it, but we think it and we act it and gays know. They know.
We talk about slavery and how horrific it was, but half the time we just pay lip service to the deeper issues, because we don’t know our history so we don’t mention Native Americans and how they were exterminated en mass and continue to be disenfranchised. We’re so proud of ourselves for changing the Red Skins but we think that’s enough. Or how slavery has never really gone away, it’s just changed hands and outfits, but it’s still well and thriving in many forms.
So it’s never enough. Until everyone is equal and inequality and racism are a thing of the past. But will they ever be? With people who seem to thrive on discrimination and putting themselves ahead of others and putting others down? If people think wearing a mask is too much, is it any wonder they really don’t give a shit if you are sick or you are vulnerable? Don’t they just want you to die and bugger off?
Likewise with illness, with chronically sick people, it’s never enough to just have laws that allow them to not be discriminated against because discrimination comes in a myriad of differing forms. Subtle. Unreachable. Devastating. People of color have to put up with this EVERY SINGLE DAY as do women, as do gays, as do sick people. Just one roll of the eye says everything. Says; ‘we think you are pathetic‘ invalidates an entire moment.
Chronic illness is a little like amputation. Obviously anyone who has suffered an amputation will refute this and rightly so. But metaphorically it remains akin to the loss of a limb. You are left flailing, unsure of how to right yourself, and continue as once you were. A part of you is lost.
They talk of periods of adjustment. The stages of grieving: Anger for what you have lost. Shame imposed by a society who now judges you weak. Acceptance of a ‘new normal’ that includes intolerable things such as chronic pain etc. For many, those stages of grieving never really end, they cycle and you go through different dilutions depending upon how you progress.
But progress is perhaps not the right word. In our linear society where so much is expected. For someone to drop off and no longer thrive, in nature they would be left behind to perish. In our society they are carried along but reminded frequently, of their burden, of their ineptitude.
For many who suffer mental illness, physical illness, both, there is a lot of shame attached to their existing after this fact. Even as people do not come out and say it directly (and believe me, many do!) there is a thin veil that is easily penetrable. People know when they are treated differently, seen differently, worse, judged without jury.
Being ‘sick’ in any manifestation is seen as a ‘weakness’ by our society. This invariably goes back to the ‘dog-eat-dog’ notion of surviving. The weakest link perishes or is a burden to the whole. But these days, with our so-called faith and mercy in place, one might imagine a little more compassion? And if you did, you would be sorely disappointed.
Since getting sick in 2017 I have felt intermittently well enough to continue working and ‘accomplishing’. But as with any pendulum, when it swings deeply toward illness, I am right back at the horror point of when it all began, down on my knees, imploring the universe for healing. And for the most part I have done this alone, because as all those who have been sick for a time will attest, most people do not stay by your side. Even those you expect to.
You can’t plan any longer. A trip is a fear because what if you get sick? Then someone suggests; maybe it’s in your head, maybe you are making yourself sick? And no matter how many times you prove otherwise, they think maybe it’s a choice, just like being gay is a choice, right?
Wrong. You can’t rely upon yourself like you used to because you never know how it’s going to be, how you are going to be. And usually you could be relied upon 100 percent and now that’s gone and somehow you still have to plan a future, but how do you plan a future if you can’t rely upon yourself?
I try to take something from every experience I have, including negative ones. Without learning we don’t grow we just regurgitate and I would rather grow even if I’m throwing up and in pain as I do it. I have taken from this experience what is obvious, but I have also tried to take from others experiences, and have noticed disturbing patterns among those I know who have also been sick for a while or a very long while.
People leave.
People don’t care.
Poverty goes hand in hand with illness.
Anxiety and fear are natural outcomes for a plethora of reasons.
Loneliness can kill.
What I have come to see is this. Sick people are TRUE WARRIORS.
They fight the unimaginable that most of us never have to endure. They have to get pacemakers in their 40s, they have to struggle through taking 2 hours to get dressed and STILL MANAGE TO SHOW UP and this strength – this strength is what I have learned the most from my experiences and listening to others. Strength comes in many forms. We dismiss most of those forms but they are real.
I watch people who have seizures and brain tumors, fight and fight and fight and I realize, we’ve got it backwards. We should be applauding these people not marginalizing them. But we do everything backwards, because as a whole we are poisoned by false ideas of what is valuable and what is not. We toss aside those we deem un-valuable when they are perhaps some of the most valuable people in the world.
So if you are disabled in any way, be it in your head, or your body, remember that. You are some of the most valuable people in the world. Let nobody ever let you forget that. You are some of the most valuable people in the world.
This is written for my sister Angie. You inspire me every single day. You are that light in the dark that refuses to give up and because of you, I refuse to give up too.
Protected: I admit
Protected: Des souvenirs fantômes
SMITTEN
For the sake of SMITTEN, a project I believe in more than anything I have ever done before, I have asked close friends to take over my social media rather than close it down, so that SMITTEN can continue to flourish and succeed.
In my absence, due to my severe eye-sight-issues, my friends will be running the SMITTEN Facebook page and all SMITTEN related materials. Our goal is to ensure SMITTEN is successful in all ways. Sales are one way of legitimizing a project and ensuring its authors are HEARD.
Obviously LGBTQ projects are harder to sell than others, but it is my hope SMITTEN can continue its success through the rousing support of all those who believe in LGBTQ equality and the rights a woman has to love another woman. Please consider supporting SMITTEN – each sale helps raise visibility and gives SMITTEN authors another opportunity to share their unique and beautiful voices.
SMITTEN news and updates can be found here
SMITTEN is for sale at Amazon and Barnes and Noble. If you support local bookstores please ask them to stock SMITTEN using Ingram. If you cannot afford a Kindle copy or hard copy please ask your local library to get a copy of SMITTEN via Ingram. It doesn’t take much and it means everything to the 120 authors and poets of SMITTEN. Indie publishing doesn’t flourish without our support as a community!
Goodbye for now
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
Possess no place
a day may show itself
long or near from now
where pain and fear possess no place
their greedy place at your table outstayed
uninvited guests
came into your life, wrecking balls
fathomless of the despair they could put
as wicked times will have us ensnared
forgetful of former peace
hostages to the ease with which
sickness makes strangers of us.
Who inhabits this body of pain?
when did normalcy include such horror?
what lurks behind the shell of our discontent?
masking the urge to cry out with futile restraint
who do we hide our agonies from? Or is it that obscene need to appear
while and strong? While behind public doors we collapse in mock
no succor for the actor of their own wellness
Give me hope we clamoring souls sing in our flung prayer and rage
let me believe
believe again
find the keys, the healer, the drug, the end of
this
or I think I wish
I never existed
a thought I’ve had many times before
though none are without regret
some of us excel at impoverished thought.
I do not remember the me before
mornings of hurt, nights of pain
was she a creature capable of delight and desire?
did I feel alive?
Sometimes it’s hard to know
the fall is long down rabbit hole
make me
myself again
whomever she was
a better dream
than this
slow living just above not existing
hardly realized
quiet in accepted
thirst
for another grasp at hope
for any
recourse
where fear and pain
possess no place
TheFeatheredSleep 