tangled slothisily twisty sticky particles stuff my heart 051115 ... ovenbird Friday night we all went out for drinks at a local craft brewery. Such a normal thing to do on such an unassuming night. The air was still and warm. The river was smooth and quiet. I was very much aware of doing this routine thing while knowing that nothing is routine for you anymore. At your last neurology appointment the news wasn’t good. It was bad. It was worse_than_bad. Neurofibrillary_tangles and plaques prevent more and more information from going where it should. Every day you discover something else you can’t do. At your appointment the doctor asked you to add two and three together. You couldn’t. You didn’t know the answer even though you were fully aware that you SHOULD know the answer and that it should be easy to tally. Whatever part of your brain allows for mathematical computations is gone and you have a front row seat for its dissolution. You are not planning to stay in that seat until the end of the show. You’re going to bow out early while you’re still enjoying the music and you can walk out under your own power. While we were drinking beer and eating a delicious clam chowder we talked about your funeral. You told us what songs you wanted us to play. We talked about the good-bye party that we’ll host while you’re still alive in the days before your scheduled exit. We talked about the food and the speeches and the people we would invite. And we laughed. A lot. You cracked so many jokes as you discussed your final moments on this earth and I could barely hold everything inside of me–the light banter, the heavy grief, the easy connection, the impending loss. While we were walking home you told us how devastating the neurology appointment was. It is becoming clear that time is running out. When you walked out of that appointment into the bright light of a beautiful fall afternoon you said to your wife, “Well, I guess I don’t have to worry about wearing sunscreen anymore.” We all laughed at the absurdity. We laughed because we love you. We laughed because you were clearly so happy to have the capacity to make and understand a joke and share it with us. That will be taken from you too, and we don’t know when. There is so much we don’t know. The progression of your disease is unpredictable and every day is an exercise in loss. But I am finding, against all odds, that it is also an exercise in presence. We have this moment, and this one, and this one and they are as delicate as the skeletal forms of fallen leaves, reduced to lacy veining. Even when there are so many holes that I can see right through you I’ll still know who you are. And when all the music inside you falls silent for the last time, I’ll be there to pick up the melody and sing it to your children for as long as breath scrapes the wounded walls of my throat. 250923 what's it to you? who go blather from