Home is a concept
I looked at a ground floor apartment today in Greenpoint. I walked down Franklin Street in the sunshine to the posh side of the neighborhood. I noticed several restaurants in the works such as a Paulie Gee slice shop and Maniac Ramen (sounds slightly scary, what is making the noodles neurotic?) plus other ambiguous type businesses that have paper over their storefront windows, working behind the scenes. WFMU was holding their annual record sale at the expo center and I noticed that the cool woodwinds music shop that used to be on Bedford Avenue near the Dunkin Donuts has moved to a little storefront on Franklin.
I was mentally thinking this would become my new center.
I was hoping to hate the apartment but it was pretty sweet inside a three family building. It's definitely smaller, square footage-wise, but it includes a large yard (nice blank, clean canvas to work upon with a wooden walkway down the center between two large beds) and space in the basement with a washer & drier. The current tenants were having a sidewalk sale with the 3rd floor neighbor who has two children--I had a nice conversation with her about the challenges of public school education. I also met briefly the tenant on the second floor that just moved in who also has two children, albeit, divorced and shared custody (a lot to learn in just an hour or so!). Landlord was nice and I heard about all the quirks of the building.
Imogen would have her own room with a door! James could use the front bedroom for a studio and we would sleep in a room that would just fit a bed. The front door opens into a small room that would probably just fit the couch against the wall. The kitchen is really the largest space made to seem larger since the screen door is on the rear wall that opens into the backyard.
It is relatively wheelchair accessible. We would have to utilize a small portable ramp for the front flight of stairs into the building which we would be able to store in the backyard or basement. Most of James's overflow from the studio would fit in the basement (everything on lifts though, it's in the floodplain).
I do not want to move.
James has been coughing for awhile now and it is being monitored. He may be aspirating his salvia which means, he's not swallowing properly and instead of the liquid traveling down his esophagus, it is traveling to his lungs, hence, the coughing. I need to be more informed by James's doctor as to what he believes is happening and the reason for ordering the X-ray last Friday. I spoke with a nurse this afternoon and she believes they are attempting to assess if James is truly aspirating and that was the point of the X-ray, to create a baseline for comparison. I feel slightly out of the loop since, unlike the NICU, I am not updated on a daily basis regarding James's health status.
Despite the coughing, James was really bright today. I told him about the apartment and asked about his thoughts on possibly moving. He said, "I would have to see it." That's such a reasonable response! I agree!
I had an epiphany the other day upon receiving a message from one of James's swimming friends who offered to visit James at Mt. Sinai and provide him with motivation for rehab. I wanted to write a nice response explaining that James is not ready for visitors at the hospital when it dawned on me--James will need visitors AT HOME! Right now, he is surrounded by therapists, nurses, caregivers, brain injury peers, a psychologist, a social worker and doctors that are constantly assessing him and helping him in his recovery. No wonder he's exhausted, especially as a basically social person! He does not want visitors because, essentially, he does not need them in the space he is experiencing currently.
When he returns home, there will be a welcome silence but also, the environment in which visitors would provide an enormous help in the adjustment to out-patient therapy and his new life. I will need all of you during that transition! Let's all wait until James arrives home and then, he will be able to welcome you on even ground! I think that makes so much sense and I owe it all to the recent offer of help from the swimmer friend--something about the message made the bell ring for me.
I have to say an aside about Facebook at this juncture. I am still floored how easily James jumped into the saddle and used Facebook. James cannot tell time. He is having cognitive difficulties. Yet, he immediately maneuvered around Facebook as if nothing was amiss. It took my breath away. Since I really do not use Facebook, I have no idea what the bar on the top of the screen is for or really, how to move around within it. James knew exactly where to go, how to click and move around different screens. It was disturbing to me. I am hoping that the mapping that Facebook has implanted on his brain is not on his right temporal lobe and that is the reason why is able to move so freely around on the site!
I am being slightly facetious about this but then again, not really. How is it that a person with brain damage is able to move around the Facebook site with such ease yet not even have a grasp of time and other basic cognitive concepts. Please take this to heart device users. The people behind making computer devices, apps and programs for your consumption are completely aware of how they are rewiring your brain. BEWARE. Empower yourself and spend more time unplugged! I wish that James's Facebook knowledge was erased and he could be free of that particular hardwiring!
James and I had a really nice talk today. There was something about his room and the Sunday vibe that allowed him to be content, ask me questions and just chat. He has no memory of his intensive care days or the visits from his family. I retold the story of Chris and Jeff visiting--their inappropriate but totally funny use of humor in the NICU. I explained how each brother handled the situation and how much they love him. James had questions about my mother and Robert visiting--he wondered where they stayed.
James was under the impression that he still might die. I think the psychologist planted the seed by telling him that he almost died in the NICU. I clarified it for him today. I told him that Bellevue was all about survival, his body atrophied there, and that we were glad he made it through alive. I explained that Mt. Sinai was all about recovery, that each day is forward movement and progress. It is not a matter about atrophy in this new setting, it is all about rebuilding. I am hoping that is sinking in.
We also discussed the jail versus the marathon metaphor again from his group therapy. James told me he thought rehab was like jail--in retrospect, he decided that he actually agreed with that assessment. I said to James, "Ok, let's define jail. Punishment, cruelty, humiliation, the taking away of one's autonomy and dignity. Is that what you experience in rehab? No, it's the complete opposite. There is nothing but support here for your physical and psychological well-being--there is zero cruelty and an avoidance of humiliation. The therapists strive to give you back your dignity and make you whole again!" James's response was, "It's still hard." Yes, I give him that one.
I want to bring James home. Home is all of you. Peace out on this Sunday evening.
I was mentally thinking this would become my new center.
I was hoping to hate the apartment but it was pretty sweet inside a three family building. It's definitely smaller, square footage-wise, but it includes a large yard (nice blank, clean canvas to work upon with a wooden walkway down the center between two large beds) and space in the basement with a washer & drier. The current tenants were having a sidewalk sale with the 3rd floor neighbor who has two children--I had a nice conversation with her about the challenges of public school education. I also met briefly the tenant on the second floor that just moved in who also has two children, albeit, divorced and shared custody (a lot to learn in just an hour or so!). Landlord was nice and I heard about all the quirks of the building.
Imogen would have her own room with a door! James could use the front bedroom for a studio and we would sleep in a room that would just fit a bed. The front door opens into a small room that would probably just fit the couch against the wall. The kitchen is really the largest space made to seem larger since the screen door is on the rear wall that opens into the backyard.
It is relatively wheelchair accessible. We would have to utilize a small portable ramp for the front flight of stairs into the building which we would be able to store in the backyard or basement. Most of James's overflow from the studio would fit in the basement (everything on lifts though, it's in the floodplain).
I do not want to move.
James has been coughing for awhile now and it is being monitored. He may be aspirating his salvia which means, he's not swallowing properly and instead of the liquid traveling down his esophagus, it is traveling to his lungs, hence, the coughing. I need to be more informed by James's doctor as to what he believes is happening and the reason for ordering the X-ray last Friday. I spoke with a nurse this afternoon and she believes they are attempting to assess if James is truly aspirating and that was the point of the X-ray, to create a baseline for comparison. I feel slightly out of the loop since, unlike the NICU, I am not updated on a daily basis regarding James's health status.
Despite the coughing, James was really bright today. I told him about the apartment and asked about his thoughts on possibly moving. He said, "I would have to see it." That's such a reasonable response! I agree!
I had an epiphany the other day upon receiving a message from one of James's swimming friends who offered to visit James at Mt. Sinai and provide him with motivation for rehab. I wanted to write a nice response explaining that James is not ready for visitors at the hospital when it dawned on me--James will need visitors AT HOME! Right now, he is surrounded by therapists, nurses, caregivers, brain injury peers, a psychologist, a social worker and doctors that are constantly assessing him and helping him in his recovery. No wonder he's exhausted, especially as a basically social person! He does not want visitors because, essentially, he does not need them in the space he is experiencing currently.
When he returns home, there will be a welcome silence but also, the environment in which visitors would provide an enormous help in the adjustment to out-patient therapy and his new life. I will need all of you during that transition! Let's all wait until James arrives home and then, he will be able to welcome you on even ground! I think that makes so much sense and I owe it all to the recent offer of help from the swimmer friend--something about the message made the bell ring for me.
I have to say an aside about Facebook at this juncture. I am still floored how easily James jumped into the saddle and used Facebook. James cannot tell time. He is having cognitive difficulties. Yet, he immediately maneuvered around Facebook as if nothing was amiss. It took my breath away. Since I really do not use Facebook, I have no idea what the bar on the top of the screen is for or really, how to move around within it. James knew exactly where to go, how to click and move around different screens. It was disturbing to me. I am hoping that the mapping that Facebook has implanted on his brain is not on his right temporal lobe and that is the reason why is able to move so freely around on the site!
I am being slightly facetious about this but then again, not really. How is it that a person with brain damage is able to move around the Facebook site with such ease yet not even have a grasp of time and other basic cognitive concepts. Please take this to heart device users. The people behind making computer devices, apps and programs for your consumption are completely aware of how they are rewiring your brain. BEWARE. Empower yourself and spend more time unplugged! I wish that James's Facebook knowledge was erased and he could be free of that particular hardwiring!
James and I had a really nice talk today. There was something about his room and the Sunday vibe that allowed him to be content, ask me questions and just chat. He has no memory of his intensive care days or the visits from his family. I retold the story of Chris and Jeff visiting--their inappropriate but totally funny use of humor in the NICU. I explained how each brother handled the situation and how much they love him. James had questions about my mother and Robert visiting--he wondered where they stayed.
James was under the impression that he still might die. I think the psychologist planted the seed by telling him that he almost died in the NICU. I clarified it for him today. I told him that Bellevue was all about survival, his body atrophied there, and that we were glad he made it through alive. I explained that Mt. Sinai was all about recovery, that each day is forward movement and progress. It is not a matter about atrophy in this new setting, it is all about rebuilding. I am hoping that is sinking in.
We also discussed the jail versus the marathon metaphor again from his group therapy. James told me he thought rehab was like jail--in retrospect, he decided that he actually agreed with that assessment. I said to James, "Ok, let's define jail. Punishment, cruelty, humiliation, the taking away of one's autonomy and dignity. Is that what you experience in rehab? No, it's the complete opposite. There is nothing but support here for your physical and psychological well-being--there is zero cruelty and an avoidance of humiliation. The therapists strive to give you back your dignity and make you whole again!" James's response was, "It's still hard." Yes, I give him that one.
I want to bring James home. Home is all of you. Peace out on this Sunday evening.
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