Humans in Science How real life impinges upon ideal science

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Can’t pick a subject title tonight

I'm yawning uncontrollably.

I just finished submitting (finally) our manuscript to Genome Research. A minute ago. One of the co-authors kept us waiting two weeks for his approval as he said he really wanted to reread it carefully - which he did, apparently - but his most useful comment to the postdoc was that perhaps the abstract wasn't sexy enough. And now he sees why it didn't make it into Nature.

I wish he had read it that carefully the first time as he was one of the major proponents among the co-authors of sending it to that sort of generalist journal to begin with. The three advocates have something like five times the career length that my postdoc and I do, combined, so we let ourselves be convinced by their flattery. Meanwhile, even if the paper's accepted, the postdoc has had to feel nervous for three additional months and I think that was unnecessary.

This weekend: nine hours' driving, some of which at 150 km/h in good conditions and some of which was in thick freezing fog and sleet at half that speed (on the way home I found a happy medium) to get to the general assembly of the patient advocacy group I work with, based in Vichy. I've done it in the past. I'm proud of myself because this year, I was able to get a firm commitment to their making a direct donation to research based on a percentage of their 2008 fundraising. Thus I'll be able to coordinate a call for proposals, after many years of waiting. It's a great start.

On the down side, the little girl I had written about earlier with respect to this pathology has recovered the use of the paralyzed half of her body, for now.  And she has lost her sight, instead, this week. We all are resigned to the fact that far too soon, she will lose her life.

The translation of hébété(e) is given as "dazed" but there is a connotation of stupidly shell-shocked which feels like the right word to describe how I feel when thinking about L and what her parents might be feeling. I can't project myself into the feelings of a four-year-old little girl, but apparently she is not as panicked as I sure as hell would be if it were me. Yes, we all marvel at the adaptability and courage of young children facing cancer and other horrible diseases. I was hébétée also, when a high school friend's three-year-old daughter died from hydrocephalus. Facing such horror, the best defense is a strong offense, which is one reason I try to help these patient groups.

As my husband remarked with tears in his eyes in the couple of hours we crossed paths this evening before he left on yet another business trip, "It could have been our daughter." It could still yet be, or yours, or anyone else's - impossible to face death frontally very long before averting our gaze. That's where the hébétement comes in - this passivity to accept the unacceptable, in order to spare the mind too much pain. And then I shake myself, and relegate it to a corner of consciousness, set the table for breakfast and clothes for my children tomorrow, while elsewhere this couple is relaying one another night and day to stay at L's bedside to hold her when she becomes violent or when she screams gibberish or when she cries from the migraine. It really doesn't bear thinking about.