Balance
We spent this morning waiting in the Bellevue Hospital Center Business office for the staff to enter James's name and address into a computer. What should normally take less than five minutes ended up stretching out to over an hour and a half. It was absurd. We had already completed our appointment with the virology clinic to follow-up with the Bellevue infectious disease team that had initially identified the exact bacteria that had inhabited James's brain. I feel a connection to the hospital because they saved James's life but because it's a public institution, it is mired in an antiquated system.
There are "rate your visit" monitors scattered around the various departments at Bellevue which appear similar to an infant interactive toy--it is a simple standing kiosk that has five or so emoji-type smiley faces which range from large smile to frown and the patient/customer is requested to push the face that best represents their experience. There was not an emoji that could possibly represent my feelings of the Bellevue Hospital experience because I am constantly flummoxed by having compassion for the people--the humans--that have to work in a beleaguered system and the pure pissed-off impatience I feel for making sick people suffer for the stupidity of a broken system.
Ok, I am not going to rage here.
I am normally a nihilistic, misanthropic, frustrated women. James is the sweetness and light. That is how we work. When James became ill, I had to reset my pessimistic disposition to a different position. There was not room for me to be the judgmental, gloomy, pissed-off, analytically critical woman when dealing with the most important person in my life struggling to stay alive. I had to make an adjustment and be slightly more positive!
During these insane Trump times in which some Americans feel it is justified to place children in jail, I am trying to maintain a level of control over my anger. I would not say it is repressed--instead, it is dormant or hibernating--a giant, sedated, grizzly bear. That is how I feel.
I try not to be short-tempered with Imogen (she takes forever to get dressed in the morning for school and continues to leave her dirty socks all over the apartment). I am nothing but positive about James's recovery process. I keep it under wraps--my fury.
The other day, though, a right wing telephone fund raiser called and asked for James Sheehan. He told me that James Sheehan had donated twenty-five dollars in March to the cause of keeping marriage between a man and a woman--which would have been the period when he was intensive care. Well. The fury was unleashed on this unsuspecting cold caller. I found myself screaming at him--that everything he represents is an anathema to us. I went from answering the telephone with a calm, "hello?" to total, outright insanity in about, say, five seconds. It was nutty.
Phew, cleansing breath.
Am I the only person that feels completely alienated from what is assumed to be normal life? James was watching the network news tonight and the top story was Paul McCartney singing in a car and touring Liverpool. I do not want to be a downer but really? That's the top story?
James has lost a bit of his critical edge. It has been slightly weird for me to accept. He's very smiley and easily distracted. As I mentioned before, he likes to watch Judge Judy. Today, while we were waiting at Bellevue, he mentioned to me that we should consider moving back to California and living in suburbia! He said, "Where the hell are we?" as we sat in our hard waiting room chairs. His idea of suburbia is 1970s Cali--our childhood. I had to remind him that there are no children in today's suburbs--they are all sequestered inside hooked to their devices.
Sigh.
Yes, where the hell are we, indeed.
James had his first session with the Visiting Nurse Service of New York physical therapist. She's great. She did open my eyes to the balance issues that James is experiencing now. Through most of James's rehab, I was missing the physical therapy sessions because I would arrive later in the afternoon when he had already completed his work with the PTs. It was good to have her point out James's weaknesses and what I should focus on and incorporate into my sessions with him. Somehow, I still tend to overlook the obvious things because the human body is a vast landscape. Everyday, I find a new aspect of his recovery to focus on.
My favorite time of day is giving James a shower at night. I laugh through the entire thing. There is something silly and playful about me washing his body. There is a moment of tension when he is slippery and unstable, placing a leg in the air to step outside the tub. We both sort of hold our breath. I am the stability--the ballast. We stand in front of the bathroom mirror, his hair wild from being hand dried with a towel and I say, "Who is that man?" and he gives me that crazy half-grin and says, "Jim Sheehan." We both laugh manically and Imogen yells from the other room, "What are you guys laughing about in there?"
Just creating a little balance in this topsy-turvy world.
There are "rate your visit" monitors scattered around the various departments at Bellevue which appear similar to an infant interactive toy--it is a simple standing kiosk that has five or so emoji-type smiley faces which range from large smile to frown and the patient/customer is requested to push the face that best represents their experience. There was not an emoji that could possibly represent my feelings of the Bellevue Hospital experience because I am constantly flummoxed by having compassion for the people--the humans--that have to work in a beleaguered system and the pure pissed-off impatience I feel for making sick people suffer for the stupidity of a broken system.
Ok, I am not going to rage here.
I am normally a nihilistic, misanthropic, frustrated women. James is the sweetness and light. That is how we work. When James became ill, I had to reset my pessimistic disposition to a different position. There was not room for me to be the judgmental, gloomy, pissed-off, analytically critical woman when dealing with the most important person in my life struggling to stay alive. I had to make an adjustment and be slightly more positive!
During these insane Trump times in which some Americans feel it is justified to place children in jail, I am trying to maintain a level of control over my anger. I would not say it is repressed--instead, it is dormant or hibernating--a giant, sedated, grizzly bear. That is how I feel.
I try not to be short-tempered with Imogen (she takes forever to get dressed in the morning for school and continues to leave her dirty socks all over the apartment). I am nothing but positive about James's recovery process. I keep it under wraps--my fury.
The other day, though, a right wing telephone fund raiser called and asked for James Sheehan. He told me that James Sheehan had donated twenty-five dollars in March to the cause of keeping marriage between a man and a woman--which would have been the period when he was intensive care. Well. The fury was unleashed on this unsuspecting cold caller. I found myself screaming at him--that everything he represents is an anathema to us. I went from answering the telephone with a calm, "hello?" to total, outright insanity in about, say, five seconds. It was nutty.
Phew, cleansing breath.
Am I the only person that feels completely alienated from what is assumed to be normal life? James was watching the network news tonight and the top story was Paul McCartney singing in a car and touring Liverpool. I do not want to be a downer but really? That's the top story?
James has lost a bit of his critical edge. It has been slightly weird for me to accept. He's very smiley and easily distracted. As I mentioned before, he likes to watch Judge Judy. Today, while we were waiting at Bellevue, he mentioned to me that we should consider moving back to California and living in suburbia! He said, "Where the hell are we?" as we sat in our hard waiting room chairs. His idea of suburbia is 1970s Cali--our childhood. I had to remind him that there are no children in today's suburbs--they are all sequestered inside hooked to their devices.
Sigh.
Yes, where the hell are we, indeed.
James had his first session with the Visiting Nurse Service of New York physical therapist. She's great. She did open my eyes to the balance issues that James is experiencing now. Through most of James's rehab, I was missing the physical therapy sessions because I would arrive later in the afternoon when he had already completed his work with the PTs. It was good to have her point out James's weaknesses and what I should focus on and incorporate into my sessions with him. Somehow, I still tend to overlook the obvious things because the human body is a vast landscape. Everyday, I find a new aspect of his recovery to focus on.
My favorite time of day is giving James a shower at night. I laugh through the entire thing. There is something silly and playful about me washing his body. There is a moment of tension when he is slippery and unstable, placing a leg in the air to step outside the tub. We both sort of hold our breath. I am the stability--the ballast. We stand in front of the bathroom mirror, his hair wild from being hand dried with a towel and I say, "Who is that man?" and he gives me that crazy half-grin and says, "Jim Sheehan." We both laugh manically and Imogen yells from the other room, "What are you guys laughing about in there?"
Just creating a little balance in this topsy-turvy world.
Understanding the context, but sometimes Paul being the headlines is a needed reprieve .
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