Nao Kao Lee Quotes in The Spirit Catches You and You Fall Down
Neil was pretty sure, however, that because Lia’s condition was progressive and unpredictable, he could treat it best by constantly fine-tuning her drug regimen. If he had chosen a single pretty-good anticonvulsant and stuck with it, he would have had to decide that Lia wasn’t going to get the same care he would have given the daughter of a middle-class American family who would have been willing and able to comply with a complex course of treatment. Which would have been more discriminatory, to deprive Lia of the optimal care that another child would have received, or to fail to tailor her treatment in such a way that her family would be most likely to comply with it?
A decade ago, that is not the way Neil looked at the situation. He never seriously considered lowering his standard of care. His job, as he saw it, was to practice good medicine; the Lees’ job was to comply.
At this point, [Lia’s sister], who was three at the time, ran over to Lia and started banging her on the chest.
“Don’t do that, there’s a good boy,” said Martin, addressing the little girl in English, of which she did not speak a word. “[… P]lease tell them they have got to watch these other little children. Lia is not a doll.”
Once I asked Neil if he wished he had done anything differently. He answered as I expected, focusing not on his relationship with the Lees but on his choice of medication. “I wish we’d used Depakene sooner,” he said. “I wish I’d accepted that it would be easier for the family to comply with one medicine instead of three, even if three seemed medically optimal.”
Then I asked, “Do you wish you had never met Lia?”
“Oh, no, no, no!” His vehemence surprised me. “Once I might have said yes, but not in retrospect. Lia taught me that when there is a very dense cultural barrier, you do the best you can, and if something happens despite that, you have to be satisfied with little successes instead of total successes. You have to give up total control. That is very hard for me, but I do try. I think Lia made me into a less rigid person.”