Yes, Sasha is scheduled to be discharged from Duke Hospital, tomorrow. I have been afraid to even mention it: on the blog, or on the NMDA-antibody encephalitis Facebook group, or to my friends and colleagues, out of base superstition. We all still feel the smashed hopes of his last discharge. For two days at the beginning of September, he was home, seemingly peaceful and in full command of his faculties, and on the second night woke up in delirium. He has been in the hospital ever since.

This past week Sasha got some transitional passes to try “life on the outside.” We first went to his favorite diner – Elmos’s – and he had his standard order – three scrambled eggs, a biscuit and a large order of fries. Then he got tired. That pass lasted an hour. Next, with his brothers and the dog, we went for a walk by the Eno River – about three hours of ordinary life on a misty day. And yesterday, he came home to watch the Superbowl, and calmly faced the second painful Pats loss to the Giants in four years. Four hours at home. Now we are scrambling to arrange the care he needs for full-time at home, and it seems like a big leap. Sasha will continue to need help with many basic activities of life. He is not ready to return to school, even part time. No one thinks the illness is completely resolved — he is still scheduled to get regular ivig and Cytoxan treatments, although the ivig at least can probably be given at home. He is on many other medicines as well, and cognitively is nowhere near where he was when he fell ill in September. Where he will end up this time is not knowable; we saw great improvement that continued for more than a year after his 2009 illness.  But he needed time free of a crisis — and we are all frankly terrified of a relapse. But, there is no question that, for the moment at least, Sasha is simply too well to be in the hospital. Which itself seems miraculous. Sasha has inner resources and resilience that have kept him going through unspeakable circumstances. I am so proud of him. What is lost is lost, and what remains remains. It is a catastrophe, but no longer an emergency.

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