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.
Quarantined kids escape briefly, screeching loud into empty streets
their thin bodies desperate for release and water sprayed
high into quiet air
I grew my nails because I am not touched, I do not arouse desire
there is no purpose in their being short or useful
for love I had once, in the magnolia dimness of loveliness.
Racketed sound is a mockery, a reminder of how things used to be
when you believed in love and it slipped through your hands
like porcupine quills that have no sharp
distracting yourself with empty boxes and things unpacked
for you belong not here nor there, nor any place
always the need to pack up and relocate, find what
has never sought finding in great wild.
You may judge if you wish
I did a good thing, though you will say it was wrong
I saw nature today at its most timorous and yet bold
I let it go, I let it go.
Many months I planned the capture of her off spring
as she ate from my plates, watching side-ways with distrusting gaze
I am after all, someone prone to superstition and wonder
she arrived a month after the death of my cat
it seemed in her resemblance, it was his return
then she is pregnant and I believe I can have
a house full of life again.
But this heart cannot take one more attempt at loving
this body though young, remembers the torment of losing
those mercies in the night and belief things last eternal
when nothing but the certainty of natures hammer sounds
and nature is not a kindly thing
though perhaps in her supposed cruelty, she is pure
whilst we save cats and neuter so that they may
grow fat and listless without purpose, swatting flies for entertainment
our city nearly drained of ferals and life, and hope, it occurred to me
I didn’t want her caught and diminished by
our belief we know what is right for
creatures of the wild.
I would say, especially as a virus seeks to diminish our population
a mass of humanity grown out of control
this is natures doing, this is the deliberate
consequence of our unprecedented surge to exist
maybe she will forgive
if she does not, is that even wrong?
We place our beliefs as if they are more
than tin soldiers and waxen effigies
as proofs of some superior knowledge
all against the tilled marrow of this earth
long outlasting us, fecund dirt and soil
from which life springs eternal and unfettered
laughing at our arrogance with our
purple capes of chastity and piety
golden crosses forged from raped stone
rules to contradict and suppress the powerless.
She was caught in this cold cage and I saw
her yellow eyes find mine
they say if you stare too long into the eyes of
a wild creature they will perceive a threat
better to bow your head in prayer and submit
they say too much that is tired and old
she looked at me and with the beseechmentof her kind and mine
she asked to be wild
not neutered for ‘her own good’
because she will develop cancer and her kittens
will die time and again to the coral snake and all
other natural things.
She wanted her chance at freedom
she would take them away now, her kittens whom I watched from
my isolation and my hurt, brightening my day
a salve of selfish joy, what is it that saves
the sanctity of the unsaved?
Her shoulders were down, almost crushed, I knew
to release was the greater good
as the wild rose is always more beautiful
on the wild rose tree and not in a vase
in a sterile room to bloom and wilt and lose
richer, than the bland salt-less life I lead
tame without children, without those who
call me when they promise to love and obey.
Our human folly I saw as glaringly
as those kittens in a line, following their mother
through high grass away
my heart stung, same as when my own cat
breathed his last and we said it was a mercy
to euthanize him in his pain
but what of his freedom?
Did he go from that place of needles and
kitty grooming and dental hygiene for pets
to something as noble as her green field?
I saw roses die when I was very young
even as I dried them and tried to keep their wholeness
they crumbled because life is bidden by our false extension
but the visceral and the sad and the sorrowful and the tragic
and quite often
something more achingly beautiful than we
with all our art and books and music
could ever be.
I didn’t want to let her go, I wanted to control
insert myself into the story
trap her kittens to tame them
save them from a less noble fate
and yet who am I?
Am I a worthy example?
with my loss of love, my lack of family?
who was I to prescribe my way? To these
who had every right to live their way?
You see, I have long known I am not
their superior, they are not inferior to me
I am neither their master nor willing to decide
their fate when they have a greater sense of life
real life, than I, in my artifice, ever will
I do not eat flesh for this reason, it is to me
a cannibalism in the way we farm and produce
milk and animal products neatly spit out
without thought to their suffering, or the
terrible way they know what will happen.
We are unnatural in our artificial world
we are too aware of things, our intelligence
can be as much a curse.
Many days I wake and have such a pain inside
me, I know only comes from the unbearable
awareness and I wish I were as simple and as
loving as those felines in my garden or that
I had not listened to sensibility as a young girl
and like this cat, who so resembles mine, who is dead
believed like the earth, after rain, we should
grow wild and free
unbidden.
Yet we have in a way, and with our vast numbers
disease and famine, virus and pest try to
even the score
it is as natural as it comes to get a virus and die
but we are not able to accept that, we believe we
should conquer this God given earth, spreading ourselves out
until we are no different to bacteria or roaches.
I pity us, I pity what we know and do not know
in some ways we are the same as this mother
trying to save her kittens because of an impulse
in her case the purity of instinct
in ours we have choices and often they lead to greed
and an insatiable desire for more.
I choose
seeing her resigned, defeated self
I release the cage, it springs back, she rushes out
it feels so right to see her dart across the field, unencumbered
I know she will take them far away now
I know I will lose them
I also know I never possessed them
and that it is right this way
for pets are not ours to ‘own’ or be master of, they are the chained
learned mules and horses who have been broken
maybe they do not know it and are happy
but what of those who are still wild?
Who am I to take, to decide? To think I know best?
I have read all the books about feral cat population
show cruel it is for nature to flourish unchecked
how disease runs rampant and sickness abounds
and I think of us and our wish to have choices
even as the same thing happens and we perish
to the hands of disease and the will of something more powerful
than our tinker toys and our belief we know all.
As much as she punishes me for my error
walking away, leaving nothing but footprints
in dry sand on my emptied deck
I feel I have listened to
something deeper than talk radio or
my biology books, I have instead
heard the call of the wild and it told me
do not always think you can disturb
this felted land with your superior knowledge
you should only know, you do not know
much.
How am I an example with my perpetuate grief
my unfulfillment, unhappy childhood, empty rooms.
All the awareness we have can be a curse
better to be wild, not to expect love or loyalty
those are human constraints, doomed often to failure
better to be without rule, not to live for glory or purpose beyond
the simplicity of instinctmy instinct told me to open the cage
it has always sought to protect rather than capture
even if she dies out there, she dies intact
not a creature molded by us, into something hybrid and wrong.
I have nothing in my arms now, as I had
nothing in my arms then
and I don’t cut my nails because there is no-one to love
or hold me when I need to be held
because humans promise and break those promises like
egg shells cast on skillets
because you told me you loved me always and
soon you couldn’t even lift a finger or try
to write a line in love, for your bitterness soured your
entire soul and I had a heart filled
but with no way to empty it.
I no longer want to be let down and told
I don’t write because there’s nothing to say
and I don’t want a relationship based on writing
because all those who were separated in the past
wrote letters to each other many, many times
no matter their distance.
It is rather, our modern impatience that says
I want it all now, I want it all or none
then you shall have none, as I shall have none
and all those wasted years were a grave mistake
just as many things I have done are.
I am not making another mistake
I will not keep her behind bars
where I have been waiting for you to do right by me
where I have been expecting to be treated right
when most people are anything but … merciful
it is our human world and I wish I were
instead that mother or a deer unbound
it is sad that we die of the virus
it is more sad, that we live as we do
things happen as lessons to teach us
will we listen? Or will we repeat
and repeat and repeat?
I release her back
into the mercy of the wild
where she looks once
over her shoulder and then
quick as lightning
she is gone.
Written in memory of the cat who loved me loyally more than any person ever has and whom I loved very much and brought with me to this country so long ago.
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.
I fell hard, such is the consequence of a colorful lure
Flickering in shallow water lit by hope
the world was messy, like a thirsty rag soaked with blood
still not gaining sustainence
sickness an albatross, urging me to frail edge
I had yet to learn that words can possess no value
be simply pretty things, we are misled by like Xmas baubles, turned over to reflect pattern
how can a writer realize, words can be emptier than a hollow tree?
people who write them, do so with convincing candor all enveloping like hard sales pitch
it’s impossible to believe they’re just words, without meaning, or worse, deliberate opposite
of truth, that sparten ideal, sucking ice for nourishment
when the wet ass hour comes, and it always comes
those who stay, are not those who wrote long entreaty
not the flatterers, cake-bakers, trumpet players
they are usually the last you’d believe, quiet, unobtrusive leaves coloring your floor
when your loud friends have quit you, it is they who step up and inquire
are you okay? Do you need help?
I learned this directly, as if fed by a poisoned spoon
the ache of losing louder voices and reward of quiet ones, whom you didn’t believe cared
because you listened for the caucophany and wordsmiths who
know their trade as story tellers, so very, well
and I, who also wrote stories, fell hook, line and sinker
for the best of tales
the one where it’s all about them, and if you fall short you’re out
why it took so long to see, the value of things as they stand
plain in the rain, but firm of foot
is down to the fanciful nature I had
before damp veil was torn off and sickness
cast her long net and kept you underwater without purchase
in that drowning you learned, the only lesson worthy of a mortal
it will not be those who come, bearing gifts, cherry lipped
it will not be those who say; you are wonderful, adorable
it will be the person who seems aloof and speaks volumes
because sometimes a story teller is just that
a teller of stories without depth, milking our need
they do not stay when you reach out, just the length of the tale
long or short, it always comes to an end and then
they go on to the next book and you are left
dangling with pretty words, tied in useless bouquet
now I don’t know what to call myself
“recovering” of some sort of fairytale lure
and in that recovery I find the simple joy
of people without tall stories
This is to thank so much all those magical folk I did not know would step up and to acknowledge those who spoke loudest and did the least by way of mercy. Each to your own I learned and I grew.
TheFeatheredSleep 