Sunday, August 13, 2017

Her Boyfriend Is Going to Die

I will continue my current policy of not telling you what Polly has to say about this situation. For the record, she supports the letter writer’s decision and buttresses her view with a pile of irrelevant cant. Given the terms of the letter, one tends to agree with the letter writer’s decision. It has every appearance of being the right thing to do.

The letter writer calls herself ALS I Need Is Support,Not Judgment. She describes the event that upended her life:

Eight months ago my boyfriend/favorite human in the world was diagnosed with ALS (also known as Lou Gehrig’s disease) at the age of 32. ALS affects all the voluntary muscles in the body — he will eventually lose the ability to use his hands and arms, the ability to walk, talk, swallow, and breathe. The disease manifests differently in everyone, so we don’t entirely know when or how things will progress. His eyes will still work, as will his big brain and ginormous heart, the best parts.

Clearly, this is very bad news. Life expectancy for someone with ALS is likely to be a matter of a few years. But those are not happy years. Caring for someone whose nervous system is shutting down is grueling... for anyone. As always, there are ongoing clinical trials, but they only attenuate symptoms. They do not cure the illness. One likes to hope for a better outcome, for a miracle cure, but such is not currently realistic.

The young couple has started making plans for dealing with the inexorable progression of this illness:

In the time since his diagnosis, we’ve started making huge life decisions: commitment ceremony (turns out in America you really shouldn’t get married when you’re facing chronic/terminal illness), starting a family, and moving across the country to be closer to family. And I’ve started to share those decisions beyond our inner circle.

We do not know how long this couple had been together. We do not know about their pre-diagnosis level of commitment. We do not know what either of them does in this world, where they come from, what their family means are. We do not know anything about said boyfriend, except that he has a ginormous heart. No comments on that.

But, we do not know what the boyfriend thinks. Has he begged her to stay with him because he does not want to die alone? Or has he offered to free her from any obligation to him, so that her future children will have a father? Not knowing his view or her family’s view turns this decision into something of a moral fog. For all we know she might have a Jane Eyre complex.

And yet, this woman has made a very brave and almost self-sacrificing decision. The fact that she is willing to uproot herself in order to nurse her boyfriend during his degenerative disease is admirable. One understands that such an illness will normally require professional medical and nursing care. One assumes that she cannot provide it. Of course, she might believe that the power of her love will cure him. We don't know.

If she were married we and everyone else would happily embrace her decision. It is the right and honorable thing to do. I do not understand why they cannot marry, but her immediate future looks somewhat bleak. As for medical care, it is well and good to blame the American health care system, but, at the limit, her beau will probably be eligible for Medicaid. This will require him and his family to spend everything they have, but still....

As for discouraging words, she says that she has been served up a "pile of flaming hot shit" and she wants to use it to plant a garden. We understand her willingness to see it as so much fertilizer, but still... if you were served up such a dish... wouldn't you walk out of the restaurant?

The problem lies elsewhere. It lies in the way her friends have been reacting to her decision. One notes that she has known the diagnosis for eight months and is now getting around to sharing the news with other people. You might find that to be somewhat suspicious. I do, but again, we do not know enough to understand it.

Anyway, her friends have unanimously told her that they think she is making a mistake. These fully fledged members of the millennial generation have been highly judgmental. We do not really know why.

Anyway, AISISNJ explains her conversations:

Here’s the rub — I’ve found myself, on multiple occasions, sitting through the most ridiculous, ignorant, judgmental conversations of people telling me what I should do with my life, weighing in, unsolicited, on our decision to stay together and commit to our relationship, our decision to have a child (that’s still a secret, but oh buddy do I anticipate judgment), and my decision to possibly leave my job and move across the country. I think about every aspect of these decisions every day. None of this is lost on me, I have thought about every possible outcome and judgment, but I landed on these decisions because it is the best and right thing for me to do at this moment.

There’s more:

I have sat in a closed room with someone and smiled and nodded when they told me to leave my favorite human being. I was kind and polite and respectful. They know so little of my life and relationship, and yet I sat there valuing their feelings over mine. I listened patiently when a friend delivered a 20-minute lecture about waiting a year to have a child and suggested that we had to “plan” for this and that she wouldn’t feel sorry for us if we were destitute because we didn’t plan right. HA-HA-HA, how do you plan for a disease that may cost us $300,000+ a year? HOW? That baby isn’t the problem — the problem is the U.S. health-care system and that lack of research, funding, and support for orphan diseases. But during that conversation I was so small and quiet and scared.

At the least, her friends seem like moral slime. AISISNJ sits there listening to them and has no real response. The point is interesting in and of itself. After all, she could just tell them that she does not want to hear what they think and that they should try to respect her decision. Note that she is considering what is best for her. What about her family, her friends and her future children?

So, the question transforms itself. After all, these friends know the woman. We do not. They presumably know the boyfriend. We do not. For my part I will tell you that her not telling them, their not noticing the illness for months on end strikes me as suspicious. Are these people friends or family? I find it peculiar that the letter writer does not identify her family members and designate their views as such. After all, her decisions will affect them directly… especially if she and her boyfriend run out of money and need to borrow from family.

Again, we know nothing of any of this, but I find it curious that she does not share it. Moral dilemmas do not exist in a vacuum. Human beings do not exist as isolated autonomous social beings. They are connected, to friends and family. Apparently, this woman is trying to sever her attachments. It’s not a good sign.

Were the situation presented in less stark terms and less fatal terms, I would tell you that when everyone around you thinks that you are making a mistake and your heart tells you otherwise, the chances are very high that your friends and family are right.

If the group in question is disinclined to be judgmental their open opposition to her decision might signal that she is making a bad decision. Perhaps their fear for her added to their care about her has caused them to oppose her decision overtly. If so, that would suggest that she is making a mistake.

Presumably, her friends and family know her boyfriend. We do not. Thus, they might possess information that we do not have. For all we know, her favorite person in the world—an especially empty description—is not a nice guy or even a good person. Perhaps he has character flaws that out besotted letter writer has overlooked or ignored. We do not know. But her friends do. Could it be that the letter writer sits dumbfounded while her entourage tells her that she is making a mistake because somewhere she knows that she is making a mistake.

As I said, we all sympathize. And we all assume that she is doing the right and proper and moral thing. But, we simply do not know enough about it. Polly agrees with the letter writer, but Polly does not know how to think about such issues.

Were the issue slightly different, were there something other than a fatal disease involved, I would tell you that when a woman feels one way, especially in relation to a romantic attachment, and all her friends are flashing red lights at her, the chances are very good—no, they are better than good—that her friends are correct.

We have all heard tell of women who have stayed in abusive relationships beyond the point where they should have picked up and left. We have heard tell of women who have allowed themselves to be seduced by scoundrels and low life degenerates when everyone around them was telling them to run away. You might ask whether a masochistic tendency draws them into these webs, to the point where they suffer actual harm. I think we would do better to say that they are suffering and are making bad decisions because they have been told to trust their heart and not their friends. They have been taught that they are independent and autonomous, to the point where they should make decisions based on how they feel, not on how other people, the people who care most for them, see the situation.

Telling women that they should aspire to the anomic state of independence and autonomy has harmed many women immeasurably. It leaves them alone and isolated, detached from a social network, making decisions that reflect more on their anomie than on their good judgment.

Today’s case might be the exception that proves the rule, but, knowing nothing other than the fact that the letter writer feels one way and all of her friends and family feel another… I would say that the friends and family are more likely to be right about it. If not in this case, in nearly every other case. Telling young women to follow their hearts or their bliss is very bad advice indeed.


Ares Olympus said...

The key sentence for me is this "The disease manifests differently in everyone, so we don’t entirely know when or how things will progress."

If you know someone you love will likely be dead in 6 months to 5 years, most will stick it out, especially if there are support systems. But when you don't know what's going to happen, how do you commit to a difficult future of decades?

Stephen Hawking is still alive past 70, but did divorced after 30 years and married his nurse for over 10 years. And amazingly he also had kids, so he's not fully alone.

I'd never dismiss the power of love. I suppose I'll go reincarnation as my explanation of why people commit a life to something less than the most we could get. Perhaps her soul was disloyal in her last incarnation, and she's here to prove herself, or try, and there are different lessons to learn from every choice. So the important thing is accepting it is a choice. If you're compelled to only one point of view, probably you're going to find a limit to that down the road, and face a different related choice later. Anyway, "meaning" is clearly one of those mysteries of life, and it can't be simply rationally understood or argued against.

Nan said...

The reason marriage is a problem is that all of his assets must be used for his care before going on medical assistance. If they're married it's much more complicated.

James said...

What she does is nobodies else's damn business. She should do what she thinks is right and live with it.

Stuart Schneiderman said...

AS the old saying goes, no woman is an island. Her actions affect many other people, members of her family and anyone who has a social connection to her. She is doing exactly what she wants to do, but that does not mean that that is the best way to make a decision. And it does not mean in other circumstances that the principle might lead to some very bad outcomes.

James said...

I'm really not trying to disagree. You're right, no one is an island. Of course her actions will affect a lot of other people, but I still say she has to do what she thinks is right and most importantly live with the result. This doesn't imply in my mind any rightness or wrongness in her actions, it just means it's her decision and she has to make it and live with it. To me people have gotten away from that idea.

Anonymous said...

This happens and it isn't a millennial thing. Perhaps millennials are worse than previous generations though. These are presumably people in their early thirties and what is happening to the letter writer is way out of their comfort zone. Yet the friends try to 'fix' things within their own beliefs and limited experience. They are at least 8 months behind her in development, plus they lack the experience of having to go through such heart wrenching decisions. AISISNJ has outgrown her friends. What she needs now are new friends, preferably people who have gone through the same or a similar ordeal, and those who are able to bridge the huge divide that unfortunately exists in our societies between the healthy and the chronically ill.

trigger warning said...

However tragic and heartbreaking this scenario is, I'm comforted, knowing that some people have yet to succumb to the utilitarian hell our modern culture is striving to impose.

David Foster said...

'Note that she is considering what is best for her. What about her family, her friends and her future children?"

Highly unfair. She is considering primarily what's best for her boyfriend in the time that he has left.

I don't think 'what's best for her friends' should really enter into the equation at a comparable level, especially given the kind of people her friends seem to be.