Tuesday, October 30, 2007

Pathology Vs. Cure

At left, Houston Texans Ability Camp.


Do our infirmities define us? Ann Althouse is reading Oliver Sack's latest book (I have yet to read it, I read his first two) and says:

What do you think about this notion of illness as part of one's character? Normally, we see illness as an alien invader to be fought off or, if that is not possible, endured.
Can it be both?

My autistic son has moments of such purity of soul that a "neurotypical" person just doesn't have even at moments of perfect centeredness. And then, he will be so obtuse and self-involved that I want to scream and yank him out of the disease--the disease that is robbing him of interpersonal interaction, the disease that is robbing me of closer relationship with my son. My son gives me a glimpse of God and the next minute all I see is pathology.

There is little that's pretty about pathology. It looks ugly on slide and it looks ugly in life. I've had patients talk about "my diabetes" or "my cancer" or "my manic-depression", like it's a pet they proudly nurture and care for. Far be it for anyone, including a doctor, to intrude and suggest that the disease doesn't define them, that it is a hurdle to overcome. Oh no, the disease becomes the raison d'etre. It becomes existence. The disease becomes an excuse, the crutch to not build character. And that narcissistic passivity eventually defines them.

Even without an enabling victim, disease is a burden. Autism might be interesting and even sweet things are a by-product, I still want it gone. It is an enemy to me and to my son. The world is a mystifying place for him when he's not locked in his own orbit. He will grow up. I will grow old and I worry.

That's disease. It robs a person of experiences and potential. It may bestow some gifts but it takes away others. It renders a person helpless and dependent. How is that good? These hardships can develop character for both the sufferer and the care-giver, but it's just so much mumbo jumbo to say that physical or mental maladies are lovely. Althouse continues:
Sacks writes so beautifully and tells such interesting stories that it's hard to resist his point of view. He is thoroughly excited and fascinated by the brain abnormalities of the individuals he studies, and he expresses this emotion through the romanticization of disease and the perception of the disease as part of the integrated whole of the person. As I reader, I catch his excitement, but I worry sometimes that it's wrong to look at other people this way.
Oliver Sacks is a kind, gentle scientist and observer of human behavior. He doesn't reduce a child or adult struggling with some neurological disorder to their disease. He sees a complex and interesting organism. He also sees potential. That openness was a breath of fresh air for a new generation. It has only been the last fifteen to twenty years when parents are no longer being blamed for "making" a child autistic. Parents and families were likewise blamed for schizophrenia and other neurobiologic diseases. So Dr. Sacks has worked, thankfully, in a non-judgmental way to bring formerly stigmatized diagnoses into the mainstream.

Still, Ms. Althouse has hit upon the truth. Let's not romanticize these infirmities. Let's find cures.

3 comments:

Anonymous said...

A friend of mine has 9 children one of which is Autistic with many other issues. That little girl is about 9 now and still needs her diapers changed, still needs to be fed, still needs to be dressed, etc.

My friend once told me that she feels like that that child has ruined her life. It must have been painful for her to hear herself say such a thing. But it was honest!

Anonymous said...

...it's just so much mumbo jumbo to say that physical or mental maladies are lovely.

As in "I *AM* MY DISEASE. NOTHING EXISTS OF ME *EXCEPT* MY DISEASE/CONDITION/DISABILITY."

Remember "Deaf Culture (TM)"? Restoring hearing to who've lost it (or were born without it) being "Genocide (TM)!"? Even to the point of deliberately engineering babies with congenital total hearing loss to carry on The Culture?

I actually used to think there was something to the Jewish concept of Tikkun Olam, healing a damaged world, making whole what was broken, leaving the world better and more whole. But what if the broken parts want to stay broken?

sandy said...

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