Edge of the Abyss (2012) | Hacker News Reader

Edge of the Abyss (2012)

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144 pointsatondwal32 comments

Maybe note that this article is from 2012?

Since then, Bodhi (the brother) has been diagnosed autistic and they suspect he is also a paranoid schizophrenic, but he just doesn't verbalize like Jani does. Michael (the dad) had an affair and the parents are now divorced.

It is a truly tragic story. There is a well-written post from Michael which I can't seem to find where he gives advice to other parents raising children with mental problems.

(I found the quote, but not the whole piece)

> All I can tell you now is you have to decide what is more important to you In this life, with mentally ill children, something is going to have to go. You have decide what that is. It our case, it was our marriage. May Jani and Bodhi forgive me. I couldn’t do it all.

I stumbled across a post ending in your quote. Looks like somebody started a foundation which turned up on a search of Michael Schofield's name; you might be thinking of this post: http://janifoundation.org/blog/

http://janifoundation.org/the-fallen/

This is indeed where the quote of the parent parent comment can be found.

I remember reading this article a few years ago. I never thought the story could get worse. Tragic.

Stuff are never that bad they can't get any worse.

Polish proverb: "I thought life was as hard and as bad as it could ever get, then I heard knocking from below".

I saw a documentary on her (can't remember which), and the family rented two apartments in a complex, because she was violent with her younger brother.

That's in the article

It's stories like this that make me wish as hard as I do for better pre-birth screening for mental disorders, including autism, and continued support of abortion. It's an unbearable burden - to the parents, society, but most of all to the children themselves, who are utterly blameless and must suffer the rest of their lives as a result. I try to debate rationally and understand that other people have their own opinions but I feel sick arguing with people about this. My family has had it easier than many, certainly nowhere as bad as the family in this story, and I love my brother, but if we could choose between him existing and him not existing the latter is clearly better for all involved, including him.

But if we aborted every deviation from the norm, we'd probably slip into monoculture as a species, and risk falling prey to a mass extinction event, beyond our understanding.

Somehow, the cold statistics of DNA mutation would leave us behind, and we'd become creatures with no means of adapting, until one vast catastrophe forces the issue.

What might feel practical in the moment, for one, might be terrible for the collective.

> But if we aborted every deviation from the norm, we'd probably slip into monoculture as a species, and risk falling prey to a mass extinction event, beyond our understanding.

But he wasn't talking about that. A lot (most?) people with serious disorders will not have children, and from an evolutionary perspective that's practically the same as if they died young. There's already selection against those traits.

Human evolution is more complex than the survival of an individual, since many of our adaptations are transmitted as ideas not genes.

Following that line of thinking leads to notions about the presence & importance of second-order interactions (especially the impact of ideas on the survivability of a group); these make it hard to reject the hypothesis: production of outlier individuals is essential to our species.

Sadly outliers occur on all sides of the distribution, including the unhappy ones.

One of my parents has a serious mental illness. It first manifested and became obvious (requiring multiple hospitalizations over the years) in their late 20's after I was born. I don't have the data in front of me, but I understand a mid-to-late 20's onset and diagnosis of mental illness is not rare -- plenty of time to have kids beforehand.

That's not how genetics works in a sexually reproducing species. Most selection is via modifying allele frequencies.

The underlying point being there might not be much to learn from, if every problematic situation is swept under the carpet, so we can pretend it's not there.

You can't pre birth screen for schizophrenia. Child onset schizophrenia is incredibly rare, normally manifesting between 16-25 in males and 25-30 in females and there is no consensus on the causes of schizophrenia.

Child onset is likely due to a variant of large effect. Adult is not. The glass is half empty, half full. Some schizophrenia is probably screenable most is not.

According to other sources, the parents of these children have shaken, beaten, and overdosed at least Jani. The father also apparently admitted to molesting Jani as a baby as well.

Things might have turned out much differently for these children had they been treated differently while growing up.

There's a song that was made with the intent to bring this kind of issue closer to people, and it's approved by her parents:

https://www.youtube.com/watch?v=7Q4ZR_Bye_4

Title needs (2012), I'd love to read a more recent followup if anyone knows about one. My brother didn't show signs of his schizophrenia until his teens (it may have been triggered/hastened by drug use, I haven't kept up with the literature around that theory), it took over 10 years for him to get to a stable place with my mom's great efforts. The end of the article is encouraging, modern medications and ratios have gotten better and it really helps when the person is a minor. Keep the love and support going, and don't discount her not being a good sister in the end.

"There is no cure for schizophrenia." Yet.

I know nothing of your circumstances, but many schizophrenics gravitate to drugs to alleviate their symptoms. I very much like your sentence. "Keep the love and support going, and don't discount her not being a good sister in the end."

If I read the article right, it sounds like Jani started immediately improving once people began talking and interacting with her.

I wonder how things might have been different if that treatment would have been tried much earlier on.

Oh god I recall this article.

I have three small kids. I am blessed that they are 100% healthy.

I can't imagine how some people handle certain challenges.

It's uncanny to me that Jani hallucinates cats and rats... Toxoplasa Gondii evolved in cats and rats, and is linked to early-onset schizophrenia (http://www.ncbi.nlm.nih.gov/pubmed/16920078). Makes me wonder...

T. Gondii is known to cause infected rats to become attracted to the smell of cat urine.

i have a 3 yo daughter and a 1.5 yo son. this story is terrifying.

I find it amazing at the untold strength in parents like these. Just ordinary folks who somehow find a way to keep on trying and pushing and doing their best when faced with unimaginable challenges.

They fall and get up and keep going.

Makes so many other problems many of us have to face really seem more like "problems".

This perspective is romanticizing their hardships. The reality is probably that they have no way out and they are stuck in a cycle.

Sadly, story doesn't end here. Now the brother is autistic, possibly schizophrenic and the parents are divorced.

Ugh you're right. It seems they romanticized it in their own heads as well. And in the end they're just humans.

The dad wrote a post about it all : http://janifoundation.org/blog/

Wish them all the best either way, it cannot be an easy journey.

I have a 5 yo son and an almost 1 yo son and a family history of Schizophrenia. You ain't kidding! That's some heavy stuff in there.

What interests me most about this is that even now we are so lacking in our understanding of the function and dysfunction of the human mind that there are not even good words, robust descriptions, or any scientific metrics or diagnostics for what is going on. Words like engagement and violence get thrown around without quantification and a parade of categories are fitted and later abandoned much like Jani's imaginary friends. It is important for us to understand what the mind is and how it is evoked from brain function, but now we are mostly helpless.

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