For those readers of a certain age, you may remember the very early years of "Saturday Night Live" when the wonderful commedienne Gilda Radner (as news feature character Roseanne Roseannadanna), would turn to Jane Curtin, the news anchor and state assertively, "Well, ya know Jane there's always somethin' ". She then would invoke the wisdom shared by her father: "It's just like my daddy would always say. Every night when he would tuck me into bed, he would say, "Roseanne Roseannadanna, if it's not one thing, it's another." Perhaps not a deep Proustian thought - but a life's perspective none the less.
So let's start with the understanding that the opening statement is not a foreshadowing of changes in my status and progress. I can report that the Vestibular Rehabilitation Therapy ('VRT') is progressing well as I begin the third week of it this week. The process is all about eye and proprioception development and training to create normalcy in my balance and movement. My therapist says she sees improvement - I continue to feel frustrated by not being able to feel as I did before the surgery.
Just so I make sure that I clarify how much I am grateful about, I know that I am incredibly fortunate that besides for the initial setbacks of contracting pneumonia and the CSF leak, and the curent loss of half of my taste buds (that's related to the facial nerve - and the only facial nerve issue I have had), this has been a recuperation that has gone well. I have no paralysis and suffered no other impact other than the loss of my hearing in my left ear.
I think that the larger issues for me are going to be hard for many to grasp. I do not feel right yet. What does that mean? It means that I fall into a hazy state without much warning other than a lot of visual stimulation taking place. It means that unexpectedly the incision site will begin to throb. It means that, while much further and fewer between, I still get a throbbing headache - especially at night. It means that anyhing that involves the normal fast movement of my head creates a 'horizon moving' event - things like swimming the crawl stroke, crossing the street, walking down the steps, reading and watching TV - you get the idea. I know these things will get better, but no one can commit to how long that will take. It could be two more weeks and it could be several years.
You know when the nature of your illness is not visible it seems to be harder for people to grasp that all is not a-okay. If I were in a cast, if there were still bandages around my head or sutures in my scalp, the visual would set up the expectation. When you outwardly look healthy, it's a whole other dynamic and curiously, the expectations of your stamina, ability to interact and participate in social settings changes completely in the eyes of most people. After all as a society, we are constantly taught that if you are 'dressed' for the part you are ready to perform the role. Well my friends, I am here to tell you that is not the case. My personal challenge is to be honest about how I feel in certain situations and to follow through accordingly. However being of the personality to want to please people incessantly, making decisions based on how I feel is a challenge, but something I must continue to work on.
Last week I ventured into the Big City to take care of a few errands, including getting my shaggy locks trimmed (no need for the guffaw at this point). My keenest observation was the speed at which many people move at during the course of a regular day - a speed far faster than I am ready for. Admittedly this has me a bit concerned. The train was fine - a concern before last week, but I have that under control. Walking with others who are not used to my pace is another challenge - especially in NYC. (That one takes me back to my childhood walking with my 6'1" father who insisted that I learn to walk at his pace not he walk at mine - I usually met him at our destination at a slightly later moment.)
Well as my philosopher designate R.A.D. offered, there will always be something else that will appear on the horizon which we will need to contend. I think that is just to make sure "he/she" knows we should be paying attention and constantly making sure our checks and balances are in check. On the other hand there those events that truly test our emotional, physchological and physical wellbeing. Before the discovery of my tumor, I believe that I truly subscribed to the belief learned on the school playground many years ago - (and the great song lyric as well) - 'pick yourself up, brush youself off and start all over again.' What I have learned is that sometimes you just don't want - or even still - cannot and then you run this huge risk of getting stuck in place. The getting stuck one is the factor I fear the most - and I think most of us do. I think most days I am making the best effort possible to get myself more acclimated to normal movement and functioning - I read longer, walk a bit longer, drive a bit more, and prove that I can get back on a step stool and change a light bulb without falling flat on my face.
I do not know how you package all of that and sell it as the recuperation survival kit. I am inspired by those who have far more difficult situations with which to contend. I am inpsired by folks in their eighties and nineties that insist on maintaining a dignified and active life style. These folks should be our real heroes - dealing with physical adversity or aging and being really cool with it and doing all that only their physical limitations stop them from doing.
See you around the campus...
So let's start with the understanding that the opening statement is not a foreshadowing of changes in my status and progress. I can report that the Vestibular Rehabilitation Therapy ('VRT') is progressing well as I begin the third week of it this week. The process is all about eye and proprioception development and training to create normalcy in my balance and movement. My therapist says she sees improvement - I continue to feel frustrated by not being able to feel as I did before the surgery.
Just so I make sure that I clarify how much I am grateful about, I know that I am incredibly fortunate that besides for the initial setbacks of contracting pneumonia and the CSF leak, and the curent loss of half of my taste buds (that's related to the facial nerve - and the only facial nerve issue I have had), this has been a recuperation that has gone well. I have no paralysis and suffered no other impact other than the loss of my hearing in my left ear.
I think that the larger issues for me are going to be hard for many to grasp. I do not feel right yet. What does that mean? It means that I fall into a hazy state without much warning other than a lot of visual stimulation taking place. It means that unexpectedly the incision site will begin to throb. It means that, while much further and fewer between, I still get a throbbing headache - especially at night. It means that anyhing that involves the normal fast movement of my head creates a 'horizon moving' event - things like swimming the crawl stroke, crossing the street, walking down the steps, reading and watching TV - you get the idea. I know these things will get better, but no one can commit to how long that will take. It could be two more weeks and it could be several years.
You know when the nature of your illness is not visible it seems to be harder for people to grasp that all is not a-okay. If I were in a cast, if there were still bandages around my head or sutures in my scalp, the visual would set up the expectation. When you outwardly look healthy, it's a whole other dynamic and curiously, the expectations of your stamina, ability to interact and participate in social settings changes completely in the eyes of most people. After all as a society, we are constantly taught that if you are 'dressed' for the part you are ready to perform the role. Well my friends, I am here to tell you that is not the case. My personal challenge is to be honest about how I feel in certain situations and to follow through accordingly. However being of the personality to want to please people incessantly, making decisions based on how I feel is a challenge, but something I must continue to work on.
Last week I ventured into the Big City to take care of a few errands, including getting my shaggy locks trimmed (no need for the guffaw at this point). My keenest observation was the speed at which many people move at during the course of a regular day - a speed far faster than I am ready for. Admittedly this has me a bit concerned. The train was fine - a concern before last week, but I have that under control. Walking with others who are not used to my pace is another challenge - especially in NYC. (That one takes me back to my childhood walking with my 6'1" father who insisted that I learn to walk at his pace not he walk at mine - I usually met him at our destination at a slightly later moment.)
Well as my philosopher designate R.A.D. offered, there will always be something else that will appear on the horizon which we will need to contend. I think that is just to make sure "he/she" knows we should be paying attention and constantly making sure our checks and balances are in check. On the other hand there those events that truly test our emotional, physchological and physical wellbeing. Before the discovery of my tumor, I believe that I truly subscribed to the belief learned on the school playground many years ago - (and the great song lyric as well) - 'pick yourself up, brush youself off and start all over again.' What I have learned is that sometimes you just don't want - or even still - cannot and then you run this huge risk of getting stuck in place. The getting stuck one is the factor I fear the most - and I think most of us do. I think most days I am making the best effort possible to get myself more acclimated to normal movement and functioning - I read longer, walk a bit longer, drive a bit more, and prove that I can get back on a step stool and change a light bulb without falling flat on my face.
I do not know how you package all of that and sell it as the recuperation survival kit. I am inspired by those who have far more difficult situations with which to contend. I am inpsired by folks in their eighties and nineties that insist on maintaining a dignified and active life style. These folks should be our real heroes - dealing with physical adversity or aging and being really cool with it and doing all that only their physical limitations stop them from doing.
See you around the campus...
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