Failure and Recovery
James received the results from a swallow test he took that confirmed that he is aspirating slightly upon swallowing liquids. Aspiration is inhaling small particles of food or liquids into one's lungs which is problematic because it may lead to pneumonia or other serious complications. James also did not exhibit a strong enough cough reflex while aspirating either. The speech therapist was disappointed but I was quick to point out that at the very least, it helps us to focus on the areas of James's anatomy that require more work.
Many factors are involved in bringing the muscles and physiological features in his throat back to working order. His trach and poor posture from weak neck muscles contribute to his problems with swallowing as well. It is not so much as a set-back as a delay. James does not have the cognitive capacity to follow the explanation of the results of this test. After the speech therapist explained the failure of the test, James asked if he could have a glass of water (the speech therapist represents drinking and ice-chips to James in an almost Pavlovian manner--I think he was just waiting for her to finish speaking in her adult peanuts voice of blah...blah-blah, blah-blah-blah--so he could ask for his ice-chips). It proved he did not grasp the significance of the test which is the fact that he will not be able to start eating foods or drinking water yet because his brain is not communicating well enough with the various structures in his throat involved with the swallowing process.
I drew a picture for James of his brain and his throat with two tubes in it--one snakes to his lungs, the other to his belly. I told him that when he swallows food or water, the tube to his lungs should close off so that nothing will flow in. I think he understood it in that moment. Most likely, I will have to explain it to him several times. In fact, I told him that I would spend my birthday on Friday with him and he asked if we would have cake. I said, "Let's see if we can have an ice-chip party" and he was very pleased. He told me once again, "Ice-chips are delicious."
James's recovery process is intrinsically a mystery. He has the capacity to be so sharp and even ironic and then, not understand that he cannot eat cake on my birthday. Recovery is more than regaining James's physical capacities--it is a concept--what does it mean, exactly. A simple definition of recovery is a restoration or return to any former or better condition, especially to health from sickness. I do not agree with the assumption that anything may be restored or returned to a former state. It will be changed because life is change.
I reviewed Imogen's summer schedule with James today because I have to figure out a way to enroll Imogen in a mandatory summer music program for her middle school--since she will want to participate in the band at school--for only the last two weeks of the scheduled classes. Imogen will be spending half of the summer with her cousins in California. We had originally planned that James and Imogen would spend an extra week in California this summer to have fun up at the Russian River at a camp site rented for the entire season by James's brother, Jeff. Today, James said, "Well, I'm going to go for three weeks too." I thought he was joking. He was completely serious.
At the moment, James has the misperception that when he leaves Mt. Sinai, he will be recovered and returned to his "former or better condition." This is simply untrue on a number of levels. I had to tell him that we will be working at home for several months and that it will take him a great deal of time and dedication to regain not only the use of his muscles but his cognitive function as well.
I do not think James has grasped any of this yet. I told him that I planned to take a leave of absence from work and spend my time with him, at home, doing similar types of rehabilitation with him that he experiences at Mt. Sinai. He looked a little incredulous at me.
I do not want to project my desires or thoughts onto James's recovery process. He has to own it and I want to attempt objectivity. I need to be able to see what is actually occurring with James, on every level, rather than what I would like to see or even hope to have him regain. This is on more than a physical and cognitive level too--there is a spiritual dimension to his recovery that I do not want to overlook or superimpose my own thoughts upon his own being. I want to give James the space he needs to become the person he will be after the physical healing process is complete. I imagine it will take years of work.
I asked James if his psychologist was helping him and he sort of waved his hand away and said, "She says the same things over again that I already know--what more can she tell me other than this is hard work." It made me think of what a friend told me about his AA process and the twelve steps. In the beginning, he thought that the way people expressed themselves in worn-out cliches was ridiculous but as he became more involved in his recovery process, the meaning of those words had a deep resonance within him, no matter how many times the words were repeated and said by different people--it was an expression of a truth.
James will have casts made for his legs tomorrow so that he will sleep correctly in bed. I imagine it will be another sort of pain for him. His PT does not like the way his ankles are moving and wants to make the correction now. When I arrived today, James was being taped on his back as a form of stimulation to his brain to say, hey, these muscles are still here--let pull this man's shoulders back to sit upright!
James is so tired but he smiles every time he sees me and says, "I am so glad you are here." It is keeping me going.
I rushed off today to take Imogen to soccer practice this evening. As the sun set, the girls ran around the lot, so young, beautiful and full of life. James would have loved to see them play.
Many factors are involved in bringing the muscles and physiological features in his throat back to working order. His trach and poor posture from weak neck muscles contribute to his problems with swallowing as well. It is not so much as a set-back as a delay. James does not have the cognitive capacity to follow the explanation of the results of this test. After the speech therapist explained the failure of the test, James asked if he could have a glass of water (the speech therapist represents drinking and ice-chips to James in an almost Pavlovian manner--I think he was just waiting for her to finish speaking in her adult peanuts voice of blah...blah-blah, blah-blah-blah--so he could ask for his ice-chips). It proved he did not grasp the significance of the test which is the fact that he will not be able to start eating foods or drinking water yet because his brain is not communicating well enough with the various structures in his throat involved with the swallowing process.
I drew a picture for James of his brain and his throat with two tubes in it--one snakes to his lungs, the other to his belly. I told him that when he swallows food or water, the tube to his lungs should close off so that nothing will flow in. I think he understood it in that moment. Most likely, I will have to explain it to him several times. In fact, I told him that I would spend my birthday on Friday with him and he asked if we would have cake. I said, "Let's see if we can have an ice-chip party" and he was very pleased. He told me once again, "Ice-chips are delicious."
James's recovery process is intrinsically a mystery. He has the capacity to be so sharp and even ironic and then, not understand that he cannot eat cake on my birthday. Recovery is more than regaining James's physical capacities--it is a concept--what does it mean, exactly. A simple definition of recovery is a restoration or return to any former or better condition, especially to health from sickness. I do not agree with the assumption that anything may be restored or returned to a former state. It will be changed because life is change.
I reviewed Imogen's summer schedule with James today because I have to figure out a way to enroll Imogen in a mandatory summer music program for her middle school--since she will want to participate in the band at school--for only the last two weeks of the scheduled classes. Imogen will be spending half of the summer with her cousins in California. We had originally planned that James and Imogen would spend an extra week in California this summer to have fun up at the Russian River at a camp site rented for the entire season by James's brother, Jeff. Today, James said, "Well, I'm going to go for three weeks too." I thought he was joking. He was completely serious.
At the moment, James has the misperception that when he leaves Mt. Sinai, he will be recovered and returned to his "former or better condition." This is simply untrue on a number of levels. I had to tell him that we will be working at home for several months and that it will take him a great deal of time and dedication to regain not only the use of his muscles but his cognitive function as well.
I do not think James has grasped any of this yet. I told him that I planned to take a leave of absence from work and spend my time with him, at home, doing similar types of rehabilitation with him that he experiences at Mt. Sinai. He looked a little incredulous at me.
I do not want to project my desires or thoughts onto James's recovery process. He has to own it and I want to attempt objectivity. I need to be able to see what is actually occurring with James, on every level, rather than what I would like to see or even hope to have him regain. This is on more than a physical and cognitive level too--there is a spiritual dimension to his recovery that I do not want to overlook or superimpose my own thoughts upon his own being. I want to give James the space he needs to become the person he will be after the physical healing process is complete. I imagine it will take years of work.
I asked James if his psychologist was helping him and he sort of waved his hand away and said, "She says the same things over again that I already know--what more can she tell me other than this is hard work." It made me think of what a friend told me about his AA process and the twelve steps. In the beginning, he thought that the way people expressed themselves in worn-out cliches was ridiculous but as he became more involved in his recovery process, the meaning of those words had a deep resonance within him, no matter how many times the words were repeated and said by different people--it was an expression of a truth.
James will have casts made for his legs tomorrow so that he will sleep correctly in bed. I imagine it will be another sort of pain for him. His PT does not like the way his ankles are moving and wants to make the correction now. When I arrived today, James was being taped on his back as a form of stimulation to his brain to say, hey, these muscles are still here--let pull this man's shoulders back to sit upright!
James is so tired but he smiles every time he sees me and says, "I am so glad you are here." It is keeping me going.
I rushed off today to take Imogen to soccer practice this evening. As the sun set, the girls ran around the lot, so young, beautiful and full of life. James would have loved to see them play.
You seem to have a remarkably clear sense of the big picture. There is so much to do, and so much that has already been accomplished. Keep on truckin' Sheehans.
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