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