the process of making
I think James may have failed his second swallow test today. He was lying in bed propped up with his head out of alignment with two puffy pillows--a definitely bad position but one of comfort. I asked him what happened and he told me he vomited during physical therapy.
I heard James's version of today's events. It was slightly unclear what the results of his test were and I did not see anyone that would have that information. I am assuming that the liquids he had to drink for the test combined with a bolus lunch pushed him over the edge into nausea. I could hear his stomach making flipping noises while I put on his shoes so he could use the bathroom.
I dislike having to quiz him about his care but it seems that some nurses prefer to push the food into his tube too quickly which has a tendency to make him ill. The nurse can finish the task in less than five minutes if she uses the equivalent of a turkey baster bulb to push it through but that should not be the aim of a feeding. I told him he has the right to say no and stop anyone from treating his body in a way he does not like. He listens to me with a wide eyed expression on his face which leads me to believe he will not speak for himself.
I asked him if he wanted a foot massage and to listen to music. His friend Kevin Corrigan made a Spotify playlist and I put that on. He grinned and said "Kevin knows me well." By the time the nurse stopped by to check on him, James smiled and told him he felt better.
I brought James a stack of watercolor postcards today and opened up a watercolor set Imogen bought for him from the Guggenheim gift shop. It came with a silly finger brush. He looked at me and said, "I have to paint with this thing?" I told him to humor me. I sat down on a chair and watched him paint. I have spent many hours of my life watching James paint.
In the first few years after we moved to New York, James won a grant for a painting studio in Tribeca. Our apartment was stifling in the summer and James's studio was utterly freezing from excellent air-conditioning. I would grab a sleeping bag with lunch and visit James at the studio. I would watch him paint, read a little, then climb into the sleeping bag and take a nap. Oh, the amount of time we had back then before being parents! Luxurious time!
James did not mind me in his studio. I stayed out of the way and did not interrupt him in his flow. I liked watching him paint. I never discussed his work in process. I would wait until it was completely finished and even then, I was often hesitant to express too much. James would imagine what I thought anyway. He would say, "You think it's terrible. You hate it," even though I said nothing or did not have even two seconds to think about it.
James had moments of depression or feelings of failure. There were times he wanted to quit. I would think of ways to inspire him. We would watch a few videos in our collection, if we were feeling down about the contemporary art world or temporarily feeling estranged from our friends.
There is a documentary about Philip Guston that always made both us of feel better. Here's the trailer: A Life Lived https://www.youtube.com/watch?v=5TUXtxLFdco
Also, documentaries about Bowie, John Lennon, the Who--that always made us laugh and feel right about the world, as silly as that sounds. Here's one that always worked: https://www.youtube.com/watch?v=ReBtg2etoeM
I promised to bring James real brushes tomorrow. He is so much himself when he's painting.
He made a nice painting, considering the ridiculous brush, of the wall of his room including a watery portrait of me. First foray out. I told him he should do one every day--a challenge.
He was tired afterward but I think it is good for him--to take him back into that space that is completely his own.
I heard James's version of today's events. It was slightly unclear what the results of his test were and I did not see anyone that would have that information. I am assuming that the liquids he had to drink for the test combined with a bolus lunch pushed him over the edge into nausea. I could hear his stomach making flipping noises while I put on his shoes so he could use the bathroom.
I dislike having to quiz him about his care but it seems that some nurses prefer to push the food into his tube too quickly which has a tendency to make him ill. The nurse can finish the task in less than five minutes if she uses the equivalent of a turkey baster bulb to push it through but that should not be the aim of a feeding. I told him he has the right to say no and stop anyone from treating his body in a way he does not like. He listens to me with a wide eyed expression on his face which leads me to believe he will not speak for himself.
I asked him if he wanted a foot massage and to listen to music. His friend Kevin Corrigan made a Spotify playlist and I put that on. He grinned and said "Kevin knows me well." By the time the nurse stopped by to check on him, James smiled and told him he felt better.
I brought James a stack of watercolor postcards today and opened up a watercolor set Imogen bought for him from the Guggenheim gift shop. It came with a silly finger brush. He looked at me and said, "I have to paint with this thing?" I told him to humor me. I sat down on a chair and watched him paint. I have spent many hours of my life watching James paint.
In the first few years after we moved to New York, James won a grant for a painting studio in Tribeca. Our apartment was stifling in the summer and James's studio was utterly freezing from excellent air-conditioning. I would grab a sleeping bag with lunch and visit James at the studio. I would watch him paint, read a little, then climb into the sleeping bag and take a nap. Oh, the amount of time we had back then before being parents! Luxurious time!
James did not mind me in his studio. I stayed out of the way and did not interrupt him in his flow. I liked watching him paint. I never discussed his work in process. I would wait until it was completely finished and even then, I was often hesitant to express too much. James would imagine what I thought anyway. He would say, "You think it's terrible. You hate it," even though I said nothing or did not have even two seconds to think about it.
James had moments of depression or feelings of failure. There were times he wanted to quit. I would think of ways to inspire him. We would watch a few videos in our collection, if we were feeling down about the contemporary art world or temporarily feeling estranged from our friends.
There is a documentary about Philip Guston that always made both us of feel better. Here's the trailer: A Life Lived https://www.youtube.com/watch?v=5TUXtxLFdco
Also, documentaries about Bowie, John Lennon, the Who--that always made us laugh and feel right about the world, as silly as that sounds. Here's one that always worked: https://www.youtube.com/watch?v=ReBtg2etoeM
I promised to bring James real brushes tomorrow. He is so much himself when he's painting.
He made a nice painting, considering the ridiculous brush, of the wall of his room including a watery portrait of me. First foray out. I told him he should do one every day--a challenge.
He was tired afterward but I think it is good for him--to take him back into that space that is completely his own.
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