Wednesday, February 16, 2011
THE AGGREGATE EXPERIENCE 02/16/11
EXTRA!
____________________
YEAR END EDITION
(WITH SUPPLEMENT UPDATE)
_________________________________________________
"THE AGGREGATE EXPERIENCE"
12-31-10
(2ND JOURNEY COMPLETED, THE ROAD LENGTHENS!)
“I JUST NEED TO STAND UP FROM MY CAR WITHOUT HELP!”
On September 8, 2010, I left Rancho Los Amigos after an excruciating nine month stay. My departure from the Ranch marked the end of the first of my three part journey down this hellish joy-ride. The second part of the trilogy began when I arrived home or as I call it, “Assimilation into the Home Setting.” It was here where I had to emotionally and physically distance and deprogram myself from the institutionalization of hospital life. Coming home had to be more than just the stop-off point and end-of-the line in my recovery. The experiences and self-imposed demands surrounding my initial stay at home had to provide me with the tools needed to survive and prosper outside the hospital construct where life’s needs were often times met by an uncaring work force motivated in large part by self-interests. Moreover, in order to succeed and advance to the third stage of the trilogy, I had to have the confidence to venture out into the abyss and view myself not disabled, just unable.
A problem frequently faced by the disabled is the possibility that life’s energy and drive gathered while in therapy can easily be stifled at home if met with unnecessary obstruction and obstacles perceived to be insurmountable. There’s no “nurse call button” at home. You’re on your own. If you fall you may be on the floor for a few hours. The point is, if you can’t make it through this second phase of the journey, you might as well have stayed at the hospital or died.
When I first arrived at my new home my life was out of sorts because I was still effectively stuck in my power chair unable to get about by myself in the walker. Moreover, operating a power chair in the confines of a home is nearly impossible without banging into walls, refrigerator doors, door jams and anything else which got in the way; that’s why hospital hallways are wide.
Over the ensuing weeks, my long term physical limitations were becoming apparent and a primary source of irritation and frustration. Leaving the hospital hinted and teased of a life independent of my physical limitations while pursuing a path towards a degree of normalcy; leaving the hospital meant I was normal, didn’t it? I was to rejoin the ranks of normal society and get about my life after nine months of suffering, toil and feeling that death might not have been the least best alternative. HAH!
When you live in a hospital you expect life to be hard because you’re sick; once your sickness is over you leave the hospital and everything is supposed to be okay. Not so. If anything, the level of frustration is intensified at home. Reason tells you you’re home because you’re better; why else would you have left the hospital; once at home you feel you’re so close to your goal of independence you could taste it; you reach out to touch it anticipating how it feels, then at the last second it’s torn from your grasp only inches away. The harder you reach for your dream, the more it moves away from you, like someone pulling a ball of yarn away from a frustrated cat. Being home doesn’t automatically mean you’re closer to achieving your goal. The discipline and structure of focus developed at the hospital must be called upon once again in order to succeed, but this time, the home setting enables less structure thus requiring the need for stronger commitment and purposeful avoidance of temptation. You soon realize how sick you are, when even the simplest of tasks becomes an hour long exercise of mental fortitude.
So what do you do? You learn to laugh, you allow yourself to laugh.
Do you know how many times I’ve dropped things; no matter how close I am to the trash can, somehow the item thrown takes an extra bounce or sails through the air in an entirely unintended arc; or I’ll try to place something on the counter and because my hands don’t fully work, the item falls like a bowling pin hitting and dropping everything within its falling shadow. There are two options, scream at the top of my lungs (my dog has learned to dispatch itself in the opposite direction), or realize I can’t do anything about it except to take extra care in completing the task. Oh, I forgot, laugh. Some of the things that happen around me are truly funny and if I saw them in a Peter Sellers’ movie I’d laugh, so why not laugh at myself. After a while of laughing life doesn’t seem so harsh and what was once the source of tempered, yet palatable anger, becomes tolerable and less oppressive. Before you know it the day is over and with the coming of dawn, always a promise for a new day and an opportunity to try again.
The power to laugh at myself has allowed me to conquer the second level.
(THE ABOVE WAS WRITTEN AT THE END OF 2010.)
02-16-11
(3rd JOURNEY BEGINS, ALMOST AT THE EMERALD CITY!)
Well it’s been over a month since my last writing entitled “I JUST NEED TO STAND UP FROM MY CAR WITHOUT HELP!” And you know what, I CAN STAND UP FROM MY CAR WITHOUT HELP.
My first goal was to get out of the passenger side by the end of January; that happened at the end of December. The next goal was to get out of the driver’s side by the end of January; that happened on January 15th. I have now been driving for a month. And as a result, I have begun the third part of the trilogy: re-entering the workforce.
Three weeks ago I went looking for new suits. Since losing all of the weight, my wardrobe has become the quintessential “before picture.” It really is sick how big my clothes were, how big I let myself get, but that’s another book. Needless to My clothes could fit two “Subway” guys.
A funny thing happened while shopping, I fell and fell hard. I was leaving Brooks Brothers on Rodeo Drive, having just purchased some shirts. Falling wasn’t the funny thing which happened. The funny thing was being able to buy “slim fit” shirts. What a concept. Well, while walking on the sidewalk the tip of my left foot hit the concrete throwing my already precarious balance off; I’m now using a smaller walker which offers very little support. My right knee then bent from the momentum in response to my left foot stopping in its tracks. Both legs were now rendered worthless. I came straight down like a ton of bricks. The physics of the fall threw my head back where it met the concrete with the full force of my body brought into motion by gravity. I remember distinctly hearing the concussive noise of my head bouncing off the concrete and feeling my head impact the ground. There was nothing I could do. My body, still outside of my full control, was totally unresponsive. It was as if I went unconscious and fell straight down; deadweight. The only thing which worked was the feeling of fear. Aside from shock attendant to freefalling to the ground, I was afraid of dislocating my knees; when I fell my feet were planted to the ground so my knees bent with the collapse of my weight; dislocation of the knee is a common injury when falling. Other than a badly bruised head, I survived another fall and am intake for now.
Last week I went on my first interview for a big firm in mid-Wilshire. One of my big concerns was being seated in a chair from which I would be unable to stand. Images of the senior partner picking my ass off the floor were racing through my brain: that could not happen; I don’t care how nice my new suit looked. So when I arrived I asked to be seated on an office chair which adjusts in height. It worked, after the interview I was able to lift myself up without any problems; what a relief.
The other concern is of course my disability. Despite the new age thinking, an employer has to be reticent when their prospective employee comes in visibly disabled. They wouldn’t know if I’m getting worse, recovering or about to relapse. As luck would have it, the partner I interviewed with represented a GBS patient against a doctor for misdiagnosis. He therefore understood my condition.
The interview went great.
WEIGHT
I am 163 lbs., with a total weight loss of over 140 lbs. I’m inching towards my new goal of 155 lbs. It’s been taking a little longer because I’ve been a little more lenient with my diet; still no chili cheese fries, pizza, red meat or chili cheese burgers.
WALKING
I am now walking with a small walker having graduated from the big trough walker. I also have walked without my polio shoes with Erin standing right beside me in the event I fall. I am getting stronger all the way around, however, the progress is still slow in coming. It’s hard to believe, but I have been home for over five months. Now when measured against how long I was at the hospital, it’s simple amazing how fast these months have gone by. The nine months at the hospital seem like an eternity when compared to these last months at home. I anticipate I’ll have another year before my recovery plateaus. I don’t think I’ll fully recover, that saddens me.
Last week I went to Knott’s. Unbelievable, I was able to get on Montezuma’s Revenge and some other crazy ride. Quite frankly, I never thought I’d be able to ride a roller coaster again.
PATIENT ADVISORY BOARD
The hospital is sending me to various conferences and seminars involving patient care and advocacy. The next one is in Vegas at the Venetian.
This will be the last Aggregate as I have completed the trilogy of my recovery for I have re-entered the work force. I thank everyone for following this journey through my life and for my life. When you next hear from me it will be under a different banner.
As always, remember “It could be worse and there is always tomorrow!”
____________________
YEAR END EDITION
(WITH SUPPLEMENT UPDATE)
_________________________________________________
"THE AGGREGATE EXPERIENCE"
12-31-10
(2ND JOURNEY COMPLETED, THE ROAD LENGTHENS!)
“I JUST NEED TO STAND UP FROM MY CAR WITHOUT HELP!”
On September 8, 2010, I left Rancho Los Amigos after an excruciating nine month stay. My departure from the Ranch marked the end of the first of my three part journey down this hellish joy-ride. The second part of the trilogy began when I arrived home or as I call it, “Assimilation into the Home Setting.” It was here where I had to emotionally and physically distance and deprogram myself from the institutionalization of hospital life. Coming home had to be more than just the stop-off point and end-of-the line in my recovery. The experiences and self-imposed demands surrounding my initial stay at home had to provide me with the tools needed to survive and prosper outside the hospital construct where life’s needs were often times met by an uncaring work force motivated in large part by self-interests. Moreover, in order to succeed and advance to the third stage of the trilogy, I had to have the confidence to venture out into the abyss and view myself not disabled, just unable.
A problem frequently faced by the disabled is the possibility that life’s energy and drive gathered while in therapy can easily be stifled at home if met with unnecessary obstruction and obstacles perceived to be insurmountable. There’s no “nurse call button” at home. You’re on your own. If you fall you may be on the floor for a few hours. The point is, if you can’t make it through this second phase of the journey, you might as well have stayed at the hospital or died.
When I first arrived at my new home my life was out of sorts because I was still effectively stuck in my power chair unable to get about by myself in the walker. Moreover, operating a power chair in the confines of a home is nearly impossible without banging into walls, refrigerator doors, door jams and anything else which got in the way; that’s why hospital hallways are wide.
Over the ensuing weeks, my long term physical limitations were becoming apparent and a primary source of irritation and frustration. Leaving the hospital hinted and teased of a life independent of my physical limitations while pursuing a path towards a degree of normalcy; leaving the hospital meant I was normal, didn’t it? I was to rejoin the ranks of normal society and get about my life after nine months of suffering, toil and feeling that death might not have been the least best alternative. HAH!
When you live in a hospital you expect life to be hard because you’re sick; once your sickness is over you leave the hospital and everything is supposed to be okay. Not so. If anything, the level of frustration is intensified at home. Reason tells you you’re home because you’re better; why else would you have left the hospital; once at home you feel you’re so close to your goal of independence you could taste it; you reach out to touch it anticipating how it feels, then at the last second it’s torn from your grasp only inches away. The harder you reach for your dream, the more it moves away from you, like someone pulling a ball of yarn away from a frustrated cat. Being home doesn’t automatically mean you’re closer to achieving your goal. The discipline and structure of focus developed at the hospital must be called upon once again in order to succeed, but this time, the home setting enables less structure thus requiring the need for stronger commitment and purposeful avoidance of temptation. You soon realize how sick you are, when even the simplest of tasks becomes an hour long exercise of mental fortitude.
So what do you do? You learn to laugh, you allow yourself to laugh.
Do you know how many times I’ve dropped things; no matter how close I am to the trash can, somehow the item thrown takes an extra bounce or sails through the air in an entirely unintended arc; or I’ll try to place something on the counter and because my hands don’t fully work, the item falls like a bowling pin hitting and dropping everything within its falling shadow. There are two options, scream at the top of my lungs (my dog has learned to dispatch itself in the opposite direction), or realize I can’t do anything about it except to take extra care in completing the task. Oh, I forgot, laugh. Some of the things that happen around me are truly funny and if I saw them in a Peter Sellers’ movie I’d laugh, so why not laugh at myself. After a while of laughing life doesn’t seem so harsh and what was once the source of tempered, yet palatable anger, becomes tolerable and less oppressive. Before you know it the day is over and with the coming of dawn, always a promise for a new day and an opportunity to try again.
The power to laugh at myself has allowed me to conquer the second level.
(THE ABOVE WAS WRITTEN AT THE END OF 2010.)
02-16-11
(3rd JOURNEY BEGINS, ALMOST AT THE EMERALD CITY!)
Well it’s been over a month since my last writing entitled “I JUST NEED TO STAND UP FROM MY CAR WITHOUT HELP!” And you know what, I CAN STAND UP FROM MY CAR WITHOUT HELP.
My first goal was to get out of the passenger side by the end of January; that happened at the end of December. The next goal was to get out of the driver’s side by the end of January; that happened on January 15th. I have now been driving for a month. And as a result, I have begun the third part of the trilogy: re-entering the workforce.
Three weeks ago I went looking for new suits. Since losing all of the weight, my wardrobe has become the quintessential “before picture.” It really is sick how big my clothes were, how big I let myself get, but that’s another book. Needless to My clothes could fit two “Subway” guys.
A funny thing happened while shopping, I fell and fell hard. I was leaving Brooks Brothers on Rodeo Drive, having just purchased some shirts. Falling wasn’t the funny thing which happened. The funny thing was being able to buy “slim fit” shirts. What a concept. Well, while walking on the sidewalk the tip of my left foot hit the concrete throwing my already precarious balance off; I’m now using a smaller walker which offers very little support. My right knee then bent from the momentum in response to my left foot stopping in its tracks. Both legs were now rendered worthless. I came straight down like a ton of bricks. The physics of the fall threw my head back where it met the concrete with the full force of my body brought into motion by gravity. I remember distinctly hearing the concussive noise of my head bouncing off the concrete and feeling my head impact the ground. There was nothing I could do. My body, still outside of my full control, was totally unresponsive. It was as if I went unconscious and fell straight down; deadweight. The only thing which worked was the feeling of fear. Aside from shock attendant to freefalling to the ground, I was afraid of dislocating my knees; when I fell my feet were planted to the ground so my knees bent with the collapse of my weight; dislocation of the knee is a common injury when falling. Other than a badly bruised head, I survived another fall and am intake for now.
Last week I went on my first interview for a big firm in mid-Wilshire. One of my big concerns was being seated in a chair from which I would be unable to stand. Images of the senior partner picking my ass off the floor were racing through my brain: that could not happen; I don’t care how nice my new suit looked. So when I arrived I asked to be seated on an office chair which adjusts in height. It worked, after the interview I was able to lift myself up without any problems; what a relief.
The other concern is of course my disability. Despite the new age thinking, an employer has to be reticent when their prospective employee comes in visibly disabled. They wouldn’t know if I’m getting worse, recovering or about to relapse. As luck would have it, the partner I interviewed with represented a GBS patient against a doctor for misdiagnosis. He therefore understood my condition.
The interview went great.
WEIGHT
I am 163 lbs., with a total weight loss of over 140 lbs. I’m inching towards my new goal of 155 lbs. It’s been taking a little longer because I’ve been a little more lenient with my diet; still no chili cheese fries, pizza, red meat or chili cheese burgers.
WALKING
I am now walking with a small walker having graduated from the big trough walker. I also have walked without my polio shoes with Erin standing right beside me in the event I fall. I am getting stronger all the way around, however, the progress is still slow in coming. It’s hard to believe, but I have been home for over five months. Now when measured against how long I was at the hospital, it’s simple amazing how fast these months have gone by. The nine months at the hospital seem like an eternity when compared to these last months at home. I anticipate I’ll have another year before my recovery plateaus. I don’t think I’ll fully recover, that saddens me.
Last week I went to Knott’s. Unbelievable, I was able to get on Montezuma’s Revenge and some other crazy ride. Quite frankly, I never thought I’d be able to ride a roller coaster again.
PATIENT ADVISORY BOARD
The hospital is sending me to various conferences and seminars involving patient care and advocacy. The next one is in Vegas at the Venetian.
This will be the last Aggregate as I have completed the trilogy of my recovery for I have re-entered the work force. I thank everyone for following this journey through my life and for my life. When you next hear from me it will be under a different banner.
As always, remember “It could be worse and there is always tomorrow!”
Tuesday, February 8, 2011
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