My sister dies every day, and the system commands us to watch

[TheVanishingPoint]

My sister has lost everything.
She lost her home, her partner, her job.
She lost her beauty, the years of study, the career she had built.
She lost her health,
and with it, every shred of freedom.
But what she truly lost is the right to choose.

She has ALS.
And every single day,
something inside her shuts down,
but her mind stays on—sharp, aware, imprisoned.
She understands everything, remembers everything, feels everything.
And she can do nothing.

I look at her in that bed,
motionless, held hostage by a biology that refuses to die,
and every time, she asks me—with her eyes—
to help her go.
To shut off this lucid horror.
To give her back at least a fragment of dignity.

And I can't.
Because the law forbids it.
Because the system has decided it's more acceptable
to let someone rot, day after day,
than to allow them a death that is chosen, conscious, deliberate.

Here, compassion is a crime.
Autonomy is an empty word.
Freedom exists only in the form granted
by the dominant ideology.
And that ideology has ancient roots: religious, guilt-ridden, blind.

ALS is the perfect trap:
it doesn't kill you immediately,
it keeps you alive just long enough to suffer methodically.
It is legal torture, delivered in quiet, measured doses.
No one can save her.
No one can protect her.
No one is even allowed to give her what she asks for: an end.

And so I ask:
what is civilization,
if it doesn't allow someone to die
when life has become nothing but torment?

In the corridors of these clinics, pain drags itself like a wounded animal.
There are no tragedies—just aches,
minor anemias,
and the slow collapse of what used to be called a person.
We are nothing,
without imagination,
without the right to vanish.

 

[Darkover]

Our civilization's hypocrisy: it is not life we protect, but control. As you say, compassion is a crime not because it lacks morality, but because it defies authority. And that's what truly scares those who build these laws: the idea that someone might claim the ultimate decision as their own.

You ask, what is civilization, and that question lands like a blade. If civilization does not grant us the right to end suffering real, conscious, ongoing suffering then what is it, but a gilded prison?

Your writing deserves to be read. It belongs in public discourse in journals, essays, in a book, in front of lawmakers and ethicists

 

[Forever Sleep]

Your writing deserves to be read. It belongs in public discourse in journals, essays, in a book, in front of lawmakers and ethicists

I absolutely agree with this. You sound like a devoted brother OP so, I'm sure the answer is 'yes', but have you written to these people? Will her doctor not give you their support? It truly does sound horrendous that they are wiiling to let her suffer like this.

I'm assuming assisted suicide isn't legalised where you are but, have you tried contacting clinics that might consider it? I feel heart broken for your sister and for you. It's just as terrible that we have to witness our loved ones in this kind of distress/ pain.

You cite religion which I agree- likely is a major obstruction. Really though, with so many people leaning towards secularism, why is the majority of the world being so influenced when, so many people don't even believe?

We shouldn't be able to force our beliefs on others. A lot of people recognise that. So- why does religion contribute so strongly (seemingly) in law making for all? I'm guessing it's partly money related- like everything else.

That's not to say some religious laws shouldn't be mirrored in criminal/ civil law and upheld. Murder, theft, adultery etc. fine- prohibit them. But, religion also dictates other things. It's pretty much encouragd homophobia and sexism in the past. Maybe even now. It's been the spark of so many wars. Why can't we recognise the damage it does too and, make tweaks accordingly? As in- you believe what you want, I'll believe what I do. Let's stop interfering in each other's business!

 

[FuneralCry]

That is so terrifying, it's horrific how there's all this extreme torture and suffering in existing with no limit as to how much agony one can feel yet humans are forced to suffer trapped in this existence just waiting to die anyway, it truly is horrifying how we exist in this anti-suicide prison world where the suffering and torture of existing is seen as to force and prolong no matter what.

 

[TheVanishingPoint]

Our civilization's hypocrisy: it is not life we protect, but control. As you say, compassion is a crime not because it lacks morality, but because it defies authority. And that's what truly scares those who build these laws: the idea that someone might claim the ultimate decision as their own.

You ask, what is civilization, and that question lands like a blade. If civilization does not grant us the right to end suffering real, conscious, ongoing suffering then what is it, but a gilded prison?

Your writing deserves to be read. It belongs in public discourse in journals, essays, in a book, in front of lawmakers and ethicists

Your words struck me. You captured the essence of what I meant: it's not life that's being protected, but the power to control it. Thank you sincerely for recognizing that.

I absolutely agree with this. You sound like a devoted brother OP so, I'm sure the answer is 'yes', but have you written to these people? Will her doctor not give you their support? It truly does sound horrendous that they are wiiling to let her suffer like this.

I'm assuming assisted suicide isn't legalised where you are but, have you tried contacting clinics that might consider it? I feel heart broken for your sister and for you. It's just as terrible that we have to witness our loved ones in this kind of distress/ pain.

You cite religion which I agree- likely is a major obstruction. Really though, with so many people leaning towards secularism, why is the majority of the world being so influenced when, so many people don't even believe?

We shouldn't be able to force our beliefs on others. A lot of people recognise that. So- why does religion contribute so strongly (seemingly) in law making for all? I'm guessing it's partly money related- like everything else.

That's not to say some religious laws shouldn't be mirrored in criminal/ civil law and upheld. Murder, theft, adultery etc. fine- prohibit them. But, religion also dictates other things. It's pretty much encouragd homophobia and sexism in the past. Maybe even now. It's been the spark of so many wars. Why can't we recognise the damage it does too and, make tweaks accordingly? As in- you believe what you want, I'll believe what I do. Let's stop interfering in each other's business!

Thank you deeply for your empathy and insight. You asked the right questions—the ones society avoids out of fear or convenience. The truth is, yes, I've looked for options, spoken with doctors, considered clinics. But the law, religion, and money form a wall that no amount of suffering seems able to break. And in the meantime, she remains there. Aware. Trapped.

That is so terrifying, it's horrific how there's all this extreme torture and suffering in existing with no limit as to how much agony one can feel yet humans are forced to suffer trapped in this existence just waiting to die anyway, it truly is horrifying how we exist in this anti-suicide prison world where the suffering and torture of existing is seen as to force and prolong no matter what.

Yes. It's not just that suffering is tolerated — it's institutionalized, sanctified, legalized. The world forces us to endure even when nothing remains but pain. We are not allowed to leave the stage, no matter how unbearable the play becomes. And that, truly, is the most inhuman part of all.

 

[ceilng_tile]

My sister has lost everything.
She lost her home, her partner, her job.
She lost her beauty, the years of study, the career she had built.
She lost her health,
and with it, every shred of freedom.
But what she truly lost is the right to choose.

She has ALS.
And every single day,
something inside her shuts down,
but her mind stays on—sharp, aware, imprisoned.
She understands everything, remembers everything, feels everything.
And she can do nothing.

I look at her in that bed,
motionless, held hostage by a biology that refuses to die,
and every time, she asks me—with her eyes—
to help her go.
To shut off this lucid horror.
To give her back at least a fragment of dignity.

And I can't.
Because the law forbids it.
Because the system has decided it's more acceptable
to let someone rot, day after day,
than to allow them a death that is chosen, conscious, deliberate.

Here, compassion is a crime.
Autonomy is an empty word.
Freedom exists only in the form granted
by the dominant ideology.
And that ideology has ancient roots: religious, guilt-ridden, blind.

ALS is the perfect trap:
it doesn't kill you immediately,
it keeps you alive just long enough to suffer methodically.
It is legal torture, delivered in quiet, measured doses.
No one can save her.
No one can protect her.
No one is even allowed to give her what she asks for: an end.

And so I ask:
what is civilization,
if it doesn't allow someone to die
when life has become nothing but torment?

In the corridors of these clinics, pain drags itself like a wounded animal.
There are no tragedies—just aches,
minor anemias,
and the slow collapse of what used to be called a person.
We are nothing,
without imagination,
without the right to vanish.

I felt this way when my dad was in his last few days of life. He died from cancer, not ALS, so it was much faster, but in his last week he was too weak to get out of bed and could barely say any words. The last time he was able to speak he begged us to throw him into the ground. Nobody should have to die like that.

 

[gottacheckout]

Very well said.

 

[kotonearisato]

My sister has lost everything.
She lost her home, her partner, her job.
She lost her beauty, the years of study, the career she had built.
She lost her health,
and with it, every shred of freedom.
But what she truly lost is the right to choose.

She has ALS.
And every single day,
something inside her shuts down,
but her mind stays on—sharp, aware, imprisoned.
She understands everything, remembers everything, feels everything.
And she can do nothing.

I look at her in that bed,
motionless, held hostage by a biology that refuses to die,
and every time, she asks me—with her eyes—
to help her go.
To shut off this lucid horror.
To give her back at least a fragment of dignity.

And I can't.
Because the law forbids it.
Because the system has decided it's more acceptable
to let someone rot, day after day,
than to allow them a death that is chosen, conscious, deliberate.

Here, compassion is a crime.
Autonomy is an empty word.
Freedom exists only in the form granted
by the dominant ideology.
And that ideology has ancient roots: religious, guilt-ridden, blind.

ALS is the perfect trap:
it doesn't kill you immediately,
it keeps you alive just long enough to suffer methodically.
It is legal torture, delivered in quiet, measured doses.
No one can save her.
No one can protect her.
No one is even allowed to give her what she asks for: an end.

And so I ask:
what is civilization,
if it doesn't allow someone to die
when life has become nothing but torment?

In the corridors of these clinics, pain drags itself like a wounded animal.
There are no tragedies—just aches,
minor anemias,
and the slow collapse of what used to be called a person.
We are nothing,
without imagination,
without the right to vanish.

OP, this is beautifully written. I'm so sorry, for both your sister of course and for yourself, having to watch her go through this and feel so powerless. I cannot imagine being in either of your shoes, and I cannot express how sorry I am that she's going through this.

I'm going to guess that they won't allow her to voluntarily pass by halting eating/drinking? It's awful. Someone's basic autonomy, agency that every adult is expected to have, stripped away by people who have never been in that kind of pain... it's nothing short of inhumane. Legal torture is right. I genuinely can't imagine how she must feel, knowing that the doctors who are supposed to help ease her pain are the ones prolonging it.

But more to the point, you are right. How can doctors call themselves compassionate, how can anyone call themselves compassionate, if they cannot accept that their world view is not the only that exists? That matters? Is a civilization not supposed to be a smattering of ideals, of ways of life, coexisting and growing as we learn from each other? How can anyone expect to grow, expect to be empathetic, if they aren't willing to listen to someone else? People are so quick to balk at the idea of MAiD, but that's because they're only looking at it through a healthy person's eyes.

Anyways, sorry for such a long message. Your words and situation resonates strongly, and I'm just so sorry for you both.

 

[dust-in-the-wind]

I'm so sorry and saddened to read this post. Life is cruel and we make it crueler by letting people suffer. I know a previous poster already mentioned cessation of food/water, which in the US is totally legal, if she consents. I personally know someone that did it for advanced MS, Hospice was also used to keep her comfortable during the process as well.

 

[EmptyBottle]

Just an idea: I wonder whether terminal sedation is an option, unlike euthanasia, it is designed for unconsciousness instead of death, and involves more doses over longer time but I believe the end goal is the same, to remove suffering.

 

[notreallybored]

Just an idea: I wonder whether terminal sedation is an option, unlike euthanasia, it is designed for unconsciousness instead of death, and involves more doses over longer time but I believe the end goal is the same, to remove suffering.

ב''ה, sorry to hear about the illness, of course make sure anything is actually at the patient's request..

Anyway, just so y'all comprehend what this means, that's basically VSED or whatever (voluntarily stopping eating and drinking) but with the medical 'coma.'

Practically in terms of comfort.. my view of this in a cancer hospice scenario was that they go in with massive amounts of IV benzos (not sure what standard 'medically induced coma' drugs are, for the particular hospice I can say it was just massive amounts of benzos) stacked with opiates, and it's been too long, I can't say with certainty what the one of choice was, I believe near a decade ago it was not fentanyl with that so tightly controlled then and .. not really trying to be an opiate scholar at this point.

Now, the question of dialing in an opiate dose so it's actually *pleasant* for whoever is suffering.. technically you'd hope that would have been done while they're otherwise lucid, so slamming the benzos to the point of incoherence first kind of spoils that. I will forever wonder if that was 'almost worth the trouble' or some hellish itchy fever dream the particular loved one was hopefully too unconscious from the benzos to notice anyway. There might be some hope to hurry things along if the opiates actually produce an OD especially in a "limited beds, waiting list" kind of facility.

It's rather painful to watch particularly if they've been conscious and lucid the day before and, ahem, loose ends, things left unsaid and so on.

But, that's the reality of it. With ALS, if mechanical ventilation is required, everything might be at the mercy of the ventilator (and parenteral nutrition/hydration). Without hydration and nutrition the ultimate end might be from the VSED equivalent.

As much as I'm not much fan of existence and generally in favor of alleviating suffering.. just going to say I've actually got the personal religious paradox where at least the *priority* should be to cure things, not just hustle it along, and then.. when G-d ain't allowing that, personal responsibility for being around all the hustling it along (or not) is between you and Him, as much as that's getting a bit preachy about my religious perspective.

So it's one thing to Free Speech all the information and ideation on here, and yet when you're in the medical facilities begging for help in any direction.. just going to say, things get a bit heavy, and around the stress of someone's terminal illness, once the terminal part does set in however it does, you'll be in for an eternity of second guessing every decision made in the pressure and stress and heat of the moment. So as much as life sucks, it also sucks because being made to play a hand in the lil Kevorkian game because only doctors can do some things and only next of kin or whoever is appointed medical proxy can make other decisions.. just going to say it's heavy the more responsibility you particularly bear for the life ending decision making.

Hence.. hate to have to also comment this, but with the wherewithal, not burdening someone else with those decisions appears preferable, though just because every weird mindset is represented or simulated on this site, y'know, if possible see if there's a frickin' medical treatment that works before just making assumptions because of scary disease names. Not that there's many I'd wish a lifetime of medical billing on aside from maybe the advocates for the whole crazy system of medical billing, as is also sort of different between the "can we afford a third vacation property?" crowd and the "can we afford food and housing?" crowd.

 

[EmptyBottle]

I would think that VSE would be less painful than VSED (due to dehydration symptoms) tho as u said, it's the patient's choice, hopefully it is an informed choice