Questions Like Lights Glimmering On A Dark Night

The letter I got recently was incredibly vulnerable, open, and honest.  I asked the writer's permission to change a few details and to share a response here. 

That permission didn't come entirely freely.  The writer faltered because, she said, the question sounded stupid. 

At last she relented.  Judge for yourself whether the question is stupid.

You might want to read the question, and leave my response for another day.

I can't for a moment think that her letter isn't going to make more than a few people nod, and more than a few nod through tears.  Sometimes, more than half the answer is knowing you're not alone in asking the question.  So here's the better part of the answer: a question as poetry.

From the Mailbag:

So, last time I talked to my mom (yesterday) they were in the process of moving my brother back to the nursing home.

They made him "better."

yay?

So he gets to go back to the nursing home, languish in a chair since, well, half his body is paralyzed, all his muscles are atrophied, and the one thing in life he did enjoy - food like cake and ice cream and pudding - well, he can't have that because his epiglottis doesn't work anymore.   So he is on a food tube.   He can't talk, walk, or even roll over by himself.   He has multiple grand mal and petite mal seizures every day.  He is on more meds than I can even imagine or keep straight,  and they are heavy duty nasty ones.  And yet, when he sees my mother, his whole face breaks into a smile.

One doctor told my mother, when my brother was 2 years old and they finally found a doctor that would do the necessary risky tests to find out what was wrong, that his level of pain was constant. 

"But he would laugh and smile," my parents said.

"Well," it was explained, "that was because living in this constant level of pain was all he knew."  

He'll be 47 years old this December.  More than three-quarters of his life has been spent like this. 

And yet my Catholic faith tells me (and my mother, who is ultimately in charge of his medical decisions) to keep fighting, keep preserving that life, at all costs, as it is sacred.  Per Church rules, She wasn't "allowed" to not treat the pneumonia that landed him in the hospital this time, since it *was* treatable. 

She wasn't allowed to not treat the sepsis, because it *was* potentially treatable. 

She is "allowed" to have a "Do Not Resuscitate" if his heart were to stop, but that is all.

I love my brother.

But doesn't this same Church teach that he is going to be whole in Heaven? 

So why does the Church want us to fight so hard to keep him in this hell? 

How much longer is God gonna let him suffer, and what "lesson" are we supposed to be learning from this?

I am happy my brother is better.  I don't want him in any more pain than he already is, and I don't want him to suffer.  I don't want my mother to go thru the agony she does when this happens (and he was very, very close to dying this time.  No one thought he would make it.  He's a "fighter" they say.  But, part of me screams silently, what is he fighting *for*?)

I am sad that I know he will just end up in the same situation again, as since it is his epiglottis that isn't working, his own saliva can cause aspiration and pneumonia.  

And it will. 

The doctors have told us, it will.  It is only a matter of "how long until the next time."

And I sit here and think - God is kind and merciful?  Really????

Why can't my brother go peacefully in his sleep after my mom has kissed him goodnight one night? 
As she does, almost every night, since even at 70, she goes to the nursing home to see him almost every day.

I see God in my Mother.

But, if God is ultimately in charge of our days, and is the one who decides the moment of our death, than I am not seeing much God in God.

What can be done with thoughts like this?   I feel so horrible even thinking some of these things.

Your church believes in life, sometimes to a fault.

They believe, with an almost ironic intuition, that because there is an afterlife one must be careful of life in this present life.

They want your brother to live also as a testimony to life, to hope, and they might not be able to say for what.

Pope John Paul II in his final painful illness lived what he had taught for many years: that to suffer is to offer the self to the world as a sign that no suffering is too high a price for the gift of having lived at all.

In this way, it's a strange kind of gratitude.

I can't tell you you should be grateful.

I wouldn't dare.

I will say this.

I have no certainty whether God is the god of such sufferings.  On the whole, I think that Christians blinded by the omniscience and omnipotence of their god are misled into thinking in terms of "divine purposes," riddles that remain sadly opaque to the mind, often long after suffering people like your brother are gone.  They want a definite answer, something in the credit side of the ledger.

After all, faithful people don't have debits this size....

Do they?

Well, yes.  They really do.

These things do not produce "lessons" you could ever write in a book, or a blog.

So on the whole, no, I think not.  I think that's not right.

If this is God's doing, I'd want no part of him.

But they are trying to account for something.  They are trying to account for the feeling they have (and it's both strong and real) that in the passing of this creature, something awful has happened, a vacuum has opened up. 

Yes: a suffering person has passed on into painless sleep, or heaven, or whatever your theology will bear.  But now some reason to love, some occasion of suffering, some real, existing thing has gone away.

We have in our hands the switches that can bring easeful death, which is horrifying and painful but hardly more so than the suffering we see in front of us; or if it is more horrible, it's only so in its permanence.

We cannot call back that vapor of life once the wind catches it and it is gone, leaving behind only a scent of memory.

Down deep in our bones, we know this.

And in between the suffering and the moving on we hover and worry, rightly, about our responsibility to them.

I can say nothing authoritatively to you about what the meaning of your brother's suffering is.

I can say only this to repay your brave question: it's love that holds him, and it must be love that lets him go.  Principles will not help much.  They can only give the vaguest guidance.  Medical ethics are sophisticated to a fault, like Roman Catholicism, in these matters, but they grow numb and distant when it comes time to ask yourself, as the guardian of someone who cannot decide himself, whether it's time to stop fighting.

In that moment, do unto others as you would have them do unto you.

What I am sure of is this: if there is a god worth worshiping, it is the god who comes daily to your brother, who sits with him, maybe sings to him, and because of whom he will never be unwanted, who gives him a reason to wish he could still smile and laugh.

There is such a thing as un-God.  But what seems always to keep me coming back to faith is that in the deep ungodly suffering of your brother, in the slow deaths of those we love, we become something, or might.  Your own sympathy and compassion  (both words mean "to suffer with") shape you.  You know they do.  You can feel within you the tenderness, the numbness, the rhythm of change and growth.

You create the world you will die in.

Your love makes it more a world full of god than you will ever know.  Most peoples' love is a Maserati that they take down the street once a week at twenty miles an hour.  The suffering of your brother asks, "What've you got under that hood?  Show me."  Is this God's ways of asking?  I doubt it.  But any god you want to worship is the answer, not the question.

And the darkness, whatever it really is (and I really don't know) is not worth worshiping or giving a sanctified name such as "purposeful."  Sometimes I laugh a little at Christians, trying to articulate the meaning of the cross.  It's meaningless.  It's empty.  It is un-god.

But it is endured.  And when it is finished, so the Christians say, it was emptied of its power.  It just... lies there, waiting for you, full of grace and spirit and truth to come calmly to it, and to smile, and to say, "You certainly are dark.  But you're nothing compared to the love inside me."

The darkness seems strong because it's deep.  The pain is awful.  One day it will be time to release your brother.  I hope it's soon.  That's a lot of darkness.

But it's not stronger than the light that's in you.  And don't think nobody's watching.  Don't think nobody changed because you said, "My brother is beautiful, though he is empty and vacant to eyes that don't love him."

Ask anybody who's read your question.

Comments

[Victoria]

I can only imagine what that type of situation would be like, for him or the people around him, but the one thing that catches my attention that I would have to hold on to:
He does still smile.
And that is more precious than anything, I think.
When he's ready to go, he'll go, and no medicine or procedure will stop him. But for now, he holds on to that smile.