What Happened to Lee

If this story moves you, and you have the means, consider donating to CSF Leak research at Stanford.

Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carrol of Stanford's research has indicated, they seem to be highly misdiagnosed/undiagnosed as well.

I know HN has had posts about CSF Leaks before. I truly believe they're one of the worst things we face in this age that can actually be treated with 100% recovery in some cases. However, for far too many, that really means nothing as they'll be sent to a psych facility, nursing home, or become homeless, and die as a whithered husk of what was once a human before they have the slightest indication of what is actually wrong with them, let alone make their way to one of the few places that truly treat the condition.

> Humans are the ones who have created such an overwhelming and toxic physical environment and disconnected social one

This argument isn't really theologically sound. If God exists, he's the one that created a biological system that allows for something as horrific as dementia. That literally has nothing to do with anything humans have done. It's pointless suffering.

> and to cause our contemporaries and descendants to suffer for our failures

Who's failures caused dementia? Certainly wasn't our ancestors fault.

Personally, I gain more comfort from the idea of an impartial universe, than a God who thinks this level of suffering is necessary.

It feels a little bit condescending to compare the amount of suffering caused by things like dementia to an unruly kid who doesn't want to go to school.

I'm so sorry for your loss.

Dementia and schizophrenia are present in my family as well and caring for those in the later stages has been really hard.

I found myself torn by the same question of whether to test for genetic predisposition. After reading The Gene by Siddhartha Mukherjee, whose author is in a similar position, I have found some comfort in deciding not to test for now. As he says in an NPR interview:

> There's no one-to-one correspondence between a genome and the chances of developing schizophrenia. And until we can create that map - and whether we can create that map ever is a question - but until I - we can create that map, I will certainly not be tested because it - that idea - I mean, that's, again, the center of the book. That confines you. It becomes predictive. You become ... a previvor (ph). A previvor is someone who's survived an illness that they haven't even had yet. You live in the shadow of an illness that you haven't had yet.

https://www.npr.org/2017/05/12/528097708/the-power-of-genes-...

The universe exists to give us the opportunity to be selfless caregivers for our fellow human beings or be callous or even predatory towards those we deem "other" or "lesser". This why we each are born with a sense of morality, however molded from culture to culture and manifest from person to person, except in the rare cases of people, like Lee, that have physical pathologies that hinder it.

The non-pathological of us each have the free will to choose to self-evolve ourselves during our lives towards greater compassion for all those around ourselves, or to selfishly gather as much material pleasure as we can for ourselves regardless of the cost to others, be it monetary, emotional, or physical.

We are all actively evolving ourselves every day of our lives, for better or worse, even if all it amounts to is repetitively strengthening one's already accepted habits and attitudes. The exception being when disease or tragedy takes away our ability to rationally choose, as happens with people such as Lee. That is where compassion from our fellow human beings is part of the potential we must each welcome, for such is the moral requirement of being a human being.

We have been given what is both a great gift and a great responsibility with our free will and the mind required to learn and wield it justly and for the benefit of the whole and not just some preferred sub-group.

God is not a white man (full-disclosure: white guy here); It didn't give us free will only to then take it back from us because that means we can become, for example, callous, self-serving, corrupt, power-seeking, hypocritical fake-Christian deceivers of men.

No. The polarity of our morality extends to whichever direction the person can imagine. That is why we are both treasured above all creation and capable of the most brutal of atrocities.

We are free to be good or evil and that means we are also free to not give a fuck.