Freedom
Once again, I missed James in his exoskeleton suit. He walked all around the hospital corridors and was sitting calmly upright on one of the exercise mats in the gym when I arrived with his expressive eyes looking up at me. Nehal, his physical therapist, said, "Oh, your timing is always off by just a bit!" He was tired and had a half smile on his face. I asked him how it was and he said, "Weird."
Why? He told me the suit was heavy. Nehal corrected him by saying that the suit actually carried his weight and was not a drag on him. The suit makes James feel off-balanced because it is pulling him into correct posture and rewiring his brain to use his muscles in a coordinated manner to walk. Since the infection was on the right side of his brain, James has a tendency to place his weight and strength on his strong side and ignore the left, which is controlled by his right brain. The suit helps to correct his brain's fallacy that his left side is non-functioning. James looked great today--bright, sitting tall, and keeping his head in alignment with his body.
Later, as we discussed his dislike of the suit (he does not like the idea of a machine moving him), I discovered that James was under the misunderstanding that he would wear the suit in the future, as a new type of functioning in the world rather than as a therapeutic tool. It is easy for James to maintain a private misperception because he smiles and nods as if he understands when his therapists and doctors explain his treatment and does not voice any questions in connection to his own perception of a subject. He says "It's weird" and they do not dig deeper on that thought other than the immediate acknowledgement of yes, it's strange to have electronic equipment on your body.
James and I were chatting about the personalities in his therapy group and at one point, he had to stop me because he was feeling overwhelmed by my rapid-fire summary of each individual. At times, I find myself free and comfortable with James--we are laughing and talking as we once did--it is easy to let go and forget for a moment that he's struggling, cognitively speaking. I would overwhelm James with my intense conversation and analysis of events before he had brain surgery! I have to maintain a better awareness of myself around him and not give in to wanting his companionship too soon. I have to be a support system at all times.
I had my wheelchair driving tutorial with James's occupational therapist, Jack. We decided to take him outside to Central Park on this gorgeous spring day. Mt. Sinai is a large hospital that takes up several city blocks between Madison and Fifth Avenues. Jack described the building as a bit of a surreal maze because we enter the elevator on the third floor near James's room, take it down one flight to the second floor, cross over into the next building and then, the second floor suddenly becomes the "fourth" floor and we have to take another elevator down to a new first floor. I think that's what it was--I am still unsure! I told Jack that it was like an Escher drawing of people walking up and down stairs. I understand how the elevators work and I think I will simply ignore what "floor" I am traveling on!
There is a large glass atrium that opens out onto Fifth Avenue. I pushed James along, feeling very strange as when I first took Imogen out in her stroller--as if I were play acting and at any moment James would jump up out of the chair and we would walk away from the hospital and everything connected with his illness. I continued out into the sunshine and James was so happy. Jack explained about the height clearance for the foot rests on the wheel chair and demonstrated how to take them on and off. We found a shady patch near a row of benches facing a great lawn in which boys in red uniforms were playing football. It could not have been more perfect. James felt blessed by the electric green of the lawn and the air heavy with the scent of flowering trees.
We had a nice chat with Jack about James's artwork, his teaching style, and living in Brooklyn. Jack will be married in early June and was glad that his schedule will allow him to work with James through his time in rehab. Jack's last day at work before his wedding will be James's tentative discharge day. I am grateful for Jack because he is the absolute necessary male presence in James's rehab experience. I am sure James appreciates being surrounded by strong women but Jack provides a nice counterbalance to their energy. He's so calm and even--I am amazed by the tone of his voice and how he knows exactly the right mode of being with each individual he works with--it's more than a trained skill. Jack has an amazing spirit and energy.
I had to take Imogen to soccer practice so I missed....the removal of James's trach!!! Hooray. James's doctor met with me earlier in the day and informed me of his plan to remove it after 5:00. I cannot wait to see James tomorrow afternoon--his neck free of tubes!
There was a little dark cloud in the clear sky of James's forward progression. The doctors ordered a CT scan of James's brain and it is not completely clear. I had a feeling something was brewing because the antibiotic treatment ended on Saturday and the doctors have been trying to speak with the infectious disease team at Bellevue since last Friday. I do not understand why the communication has been so poor between the hospitals. James's doctor consulted with Mt. Sinai's infectious disease team instead and asked their opinion and I was glad that James's doctor shared this with me.
The infectious disease team at Mt. Sinai is recommending an MRI. That is completely in keeping with the protocol at Bellevue and I told James's doctor that it makes perfect sense to me to follow-up the CT scan with more precise imagining. James is not exhibiting any symptoms of infection and we have no reason to believe that the bacteria is growing again but it makes sense to have a fresh set of eyes look at the results of an MRI. It was my understanding that the neurosurgeons had done everything possible and that the infectious disease doctors were now the ones driving the car, so to speak.
I also thought that if the Mt. Sinai team sees a temporal bone defect or any other of the ideas that were being bantered about while James was at Bellevue, it would assist in his treatment should James's symptoms of the infection return.
This has been my biggest fear with James's condition. He did not suffer a stroke or brain tumor--an event that has a clear diagnosis and treatment protocol. James has to be the ambiguous one--the mystery man--an infection that lingers and bacteria that refuse to die. There is a statistical reoccurrence rate with brain abscesses. I rather not think about it. The doctors on the Mt. Sinai team have the same worries as me though, so I am not alone! It will be a condition that I have to accept and live with.
James apologized to me again for being sick. I told him to stop that--it is ridiculous. He then said, "This was a bad decision." I told him, "No one decided that this would happen!" He feels responsible for his brain infection. I explained to him that the infection in his brain was similar to being hit by an air-conditioner falling from a building. It is bad timing and there was nothing he could do to prevent it from occurring.
I told him that he does have a real job now which is to recover--that's a real thing--that and the beautiful day outside--the world that was returned to him.
We want James climbing the thirty stairs into our apartment. It is a huge challenge and I am definitely in--I want to see James feel free again!
Why? He told me the suit was heavy. Nehal corrected him by saying that the suit actually carried his weight and was not a drag on him. The suit makes James feel off-balanced because it is pulling him into correct posture and rewiring his brain to use his muscles in a coordinated manner to walk. Since the infection was on the right side of his brain, James has a tendency to place his weight and strength on his strong side and ignore the left, which is controlled by his right brain. The suit helps to correct his brain's fallacy that his left side is non-functioning. James looked great today--bright, sitting tall, and keeping his head in alignment with his body.
Later, as we discussed his dislike of the suit (he does not like the idea of a machine moving him), I discovered that James was under the misunderstanding that he would wear the suit in the future, as a new type of functioning in the world rather than as a therapeutic tool. It is easy for James to maintain a private misperception because he smiles and nods as if he understands when his therapists and doctors explain his treatment and does not voice any questions in connection to his own perception of a subject. He says "It's weird" and they do not dig deeper on that thought other than the immediate acknowledgement of yes, it's strange to have electronic equipment on your body.
James and I were chatting about the personalities in his therapy group and at one point, he had to stop me because he was feeling overwhelmed by my rapid-fire summary of each individual. At times, I find myself free and comfortable with James--we are laughing and talking as we once did--it is easy to let go and forget for a moment that he's struggling, cognitively speaking. I would overwhelm James with my intense conversation and analysis of events before he had brain surgery! I have to maintain a better awareness of myself around him and not give in to wanting his companionship too soon. I have to be a support system at all times.
I had my wheelchair driving tutorial with James's occupational therapist, Jack. We decided to take him outside to Central Park on this gorgeous spring day. Mt. Sinai is a large hospital that takes up several city blocks between Madison and Fifth Avenues. Jack described the building as a bit of a surreal maze because we enter the elevator on the third floor near James's room, take it down one flight to the second floor, cross over into the next building and then, the second floor suddenly becomes the "fourth" floor and we have to take another elevator down to a new first floor. I think that's what it was--I am still unsure! I told Jack that it was like an Escher drawing of people walking up and down stairs. I understand how the elevators work and I think I will simply ignore what "floor" I am traveling on!
There is a large glass atrium that opens out onto Fifth Avenue. I pushed James along, feeling very strange as when I first took Imogen out in her stroller--as if I were play acting and at any moment James would jump up out of the chair and we would walk away from the hospital and everything connected with his illness. I continued out into the sunshine and James was so happy. Jack explained about the height clearance for the foot rests on the wheel chair and demonstrated how to take them on and off. We found a shady patch near a row of benches facing a great lawn in which boys in red uniforms were playing football. It could not have been more perfect. James felt blessed by the electric green of the lawn and the air heavy with the scent of flowering trees.
We had a nice chat with Jack about James's artwork, his teaching style, and living in Brooklyn. Jack will be married in early June and was glad that his schedule will allow him to work with James through his time in rehab. Jack's last day at work before his wedding will be James's tentative discharge day. I am grateful for Jack because he is the absolute necessary male presence in James's rehab experience. I am sure James appreciates being surrounded by strong women but Jack provides a nice counterbalance to their energy. He's so calm and even--I am amazed by the tone of his voice and how he knows exactly the right mode of being with each individual he works with--it's more than a trained skill. Jack has an amazing spirit and energy.
I had to take Imogen to soccer practice so I missed....the removal of James's trach!!! Hooray. James's doctor met with me earlier in the day and informed me of his plan to remove it after 5:00. I cannot wait to see James tomorrow afternoon--his neck free of tubes!
There was a little dark cloud in the clear sky of James's forward progression. The doctors ordered a CT scan of James's brain and it is not completely clear. I had a feeling something was brewing because the antibiotic treatment ended on Saturday and the doctors have been trying to speak with the infectious disease team at Bellevue since last Friday. I do not understand why the communication has been so poor between the hospitals. James's doctor consulted with Mt. Sinai's infectious disease team instead and asked their opinion and I was glad that James's doctor shared this with me.
The infectious disease team at Mt. Sinai is recommending an MRI. That is completely in keeping with the protocol at Bellevue and I told James's doctor that it makes perfect sense to me to follow-up the CT scan with more precise imagining. James is not exhibiting any symptoms of infection and we have no reason to believe that the bacteria is growing again but it makes sense to have a fresh set of eyes look at the results of an MRI. It was my understanding that the neurosurgeons had done everything possible and that the infectious disease doctors were now the ones driving the car, so to speak.
I also thought that if the Mt. Sinai team sees a temporal bone defect or any other of the ideas that were being bantered about while James was at Bellevue, it would assist in his treatment should James's symptoms of the infection return.
This has been my biggest fear with James's condition. He did not suffer a stroke or brain tumor--an event that has a clear diagnosis and treatment protocol. James has to be the ambiguous one--the mystery man--an infection that lingers and bacteria that refuse to die. There is a statistical reoccurrence rate with brain abscesses. I rather not think about it. The doctors on the Mt. Sinai team have the same worries as me though, so I am not alone! It will be a condition that I have to accept and live with.
James apologized to me again for being sick. I told him to stop that--it is ridiculous. He then said, "This was a bad decision." I told him, "No one decided that this would happen!" He feels responsible for his brain infection. I explained to him that the infection in his brain was similar to being hit by an air-conditioner falling from a building. It is bad timing and there was nothing he could do to prevent it from occurring.
I told him that he does have a real job now which is to recover--that's a real thing--that and the beautiful day outside--the world that was returned to him.
We want James climbing the thirty stairs into our apartment. It is a huge challenge and I am definitely in--I want to see James feel free again!
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