True things and nonsense.

A thought that I think my mom thinks, even though I have empirical evidence that suggests otherwise: because she doesn't want to live with any further disabilities, it somehow negates my life. Like she thinks a life with a disability isn't worth living.

Last year or maybe it was two years ago (they blend together) when the docs had to amputate part of her foot, she told me that if she had any further infection in her foot, infection which would impel them to take off the whole foot, that she didn't want to live without a foot. That she would rather be let go septic and die. Fast forward to this situation, and replace foot with (possibly temporary) feeding tube.

Putting aside the irrational thought for the moment, her statements also remind me of an opinion I encountered when I was trying to lead my students in a rhetorical analysis of one argument among the many opinions in the ethics of what people call "the right to die."

ASIDE: Again, please, I don't want to debate ethics on the blog. This is me, emotionally processing. I put it into the world instead of keeping it private in case even one other person that reads this may be helped by it. Also to give my friends insight into what is happening with me right now, since I pretty much am not talking about it in their company.

Anyway, the article was called "Rising to the Occasion of Our Death." Here's the paragraph I'm interested in right now:

[at this moment both Luna and Ruskin have come in whining. One is acting like a kitten on speed and one is acting like a grumpy old man. And now small children are babbling outside my window. I can feel my early morning, tenuous concentration start to erode a little.]

Advocates of active euthanasia appeal to the principle of patient autonomy-- as the use of the phrase "voluntary euthanasia" indicates. But emphasis on the patient's right to determine his or her destiny often harbors an extremely naive view of the uncoerced nature of the decision. Patients who plead to be put to death hardly make unforced decisions if the terms and conditions under which they receive care already nudge them in the direction of the exit. If the elderly have stumbled around in their apartments, alone and frightened for years, or if they have spent years warehoused in geriatrics barracks, then the decision to be killed for mercy hardly reflects an uncoereced decision. The alternative may be so wretched as to push patients toward this escape. It is a huge irony and, in some cases, hypocrisy to talk suddenly about a compassionate killing when the aging and dying may have been starved for compassion for many years. To put to bluntly, a country has not earned the moral right to kill for mercy unless it has already sustained and supported life mercifully. Otherwise we kill for compassion only to reduce the demands on our compassion. This statement does not charge a given doctor or family member with impure motives. I am concerned here not with the individual case but with the cumulative impact of a social policy.

My mom has stumbled around in her life alone and frightened for years. She has stubbornly refused to be pulled from her own morass. Many have tried. She has, over half my life, whittled away her choices until she got to where she's at now.

However, I still can't help but think, for example, that she would not really believe she'd lose her independence, say, with an amputated foot, if she knew she could afford a vehicle with the appropriate modifications to still let her drive. Or if she could move to a city and a climate that would allow her the ability to get around easily using a wheelchair.

But part of me knows this is crap. She equates having to use a wheelchair, even, with like... the worst thing that could happen ever. I really do think she would rather die than use one. I don't know if this is attitudinal, or if she is making this assumption based on some broken cost-benefit analysis. Is the analysis still considered broken if she's poor and living in rural GA?

She refuses counseling.
She refuses counseling.
She refuses counseling.

She would rather die than use a wheelchair.

She mainstreamed me. She told me that I could be like anyone else. She fostered an independence in me that she didn't have by making me do things that I was terrified of doing and sort of like... somehow implied that I had no choice.

I never felt like it was okay to refuse. To say X is too much. I rode horses, did dressage and stadium jumping. She didn't get why I didn't want to compete but eventually let me have that. A lot of time in the arena alone, hating myself. But being thrilled I made it through another lesson. My body was all muscle, so small atop the horses who got bigger and bigger each year. Until I was riding a 16-hand gelding and felt like an ant on the roof of a Porsche just as it enters a tunnel.

I got C's in math because I was bad at math, not that I couldn't make my eyes go back and forth between board and notebook and board to copy the long algebraic proofs and still concentrate on the logic behind them as it was being explained to the class.

She yelled. She screamed. She called me horrible names. One of which was lazy. She asked me how I would ever get into MIT with those grades. I ended up not applying. Not that I'm saying I was a thwarted computer scientist. It's not where my heart truly lay. But.

But it was still a gift.

I realized I could fight through things though they terrified me and that's how I lived my life for a long time. Gritting my teeth against the edge of terror. Probably when I started working with A was when I began to loosen my grip a little.

If this entry doesn't make sense, it's because nothing, nothing made sense or does.