the_book_of_loss ovenbird Posterior_cortical_atrophy is a rare form of young onset dementia. It affects the visual systems of the brain first before it takes everything. This is the book of what it has taken from a friend I love and what it has failed to take. ....... He loses things now, when he sets them down. The signal that travels his optic nerve to the brain flickers and crackles, so what he could see in his hand disappears as he sets it on the table. And so, at the holiday party, the room is strewn with chocolates, every one a failed attempt to experience the small pleasure of tasting something sweet. Every one a hope unfulfilled. And yet he takes another, believing inside himself that eventually his fingers will hold on to what his eyes have lost, grasping a gold wrapped promise until it reaches his lips. Every day is still a gift. They're just getting harder to unwrap. 251213 ... ovenbird Reality isn’t as sturdy as it once was. This is new. First he couldn’t see what was there. Now he sometimes sees what isn’t. In the morning he stood in the kitchen holding the handle of a glass coffee pot. “I’m so sorry!” he said to his wife. “I broke it.” He was dismayed. So many things had already been broken or misplaced. He didn’t want to create more work for his wife. He didn’t want to author chaos and litter the floor with glass shards. She looked at him there, in clothes that can no longer have buttons or zippers, with his face opened into an apology and she looked at the pot in his hand. “It’s okay,” she said. And it wasn’t to assuage his guilt, though she would have done that too. It was okay because the pot wasn’t broken. The pot was whole but his mind…it fractures. There are multiple versions of the world now, superimposed on top of each other, and it will become harder every day to decide which one is real. All the seams are coming undone. We set our needles down. There is no chance at repair. All we can do is marvel at the beauty of all that frayed fabric catching the wind like a victory flag. 251221 ... ovenbird He can’t keep track of his glass. He loses it amidst the other glasses, which all become his glass because he can no longer tell the difference. When someone finds him holding her drink she gently trades him for his own, but it doesn’t last long. He quickly loses his glass again and picks up another. We’re celebrating a 51st birthday. “It’s the best decade!” someone insists, someone who is already far enough into their 50s to position themselves as an expert. While fumbling with yet another glass that isn’t his he says, without a hint of sarcasm, “It just gets better and better!” Then he tries to drink from the glass in his hand, which is empty, and not his at all. 260124 ... ovenbird This isn’t a situation in which you want to graduate to the next level. Advancing means degrading. Advanced age. Advanced illness. Advancing towards a finish line you would rather not cross. He has advanced from stage five to stage six. There are only seven stages. Unless you count death. Eight stages. Then whatever comes after. Nine. He’s had nine lives, each of which ends in loss, each of which starts with light. Nine circles of hell to navigate where he discovers what will be taken next and what will be left for him to love. Where before he was unsure of his external surroundings, now he’s unsure of his internal spaces. At lunch he insists that he’s lost a tooth. Everyone looks for it but they fail to find a kernel of bone on the floor or in the folds of his clothes. Upon investigation it seems the tooth is still in his mouth, exactly where it’s supposed to be, but no insistence upon this fact will convince him. The tooth is gone because, as much as it stretches and strains, his brain can’t find it. Could he lose his heart this way? Could he lose his hands? Home care will come twice a day now. There is no such thing as autonomy when clothes are a Rubik’s cube he can no longer solve. He dedicates himself to giving the future what he doesn’t have himself: hope. He gives interviews, he gives a keynote address, he tells the world what he is experiencing so that someone else can have a road map when he’s gone. There’s joy in this. A purpose. When there’s not much left the best thing to do is to give everything away, letting your final words be a light in someone else’s darkness. 260302 what's it to you? who go blather from