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
Wednesday, December 1, 2010
Monday, November 29, 2010
THE AGGREGATE EXPERIENCE - 11-23-10
EXTRA!
____________________
EVENING EDITION
_________________________________________
"THE AGGREGATE EXPERIENCE"
11-23-10
(12TH MONTH ANNIVERSARY
COUNTDOWN!)
“FORREST, I’LL BE HOME IN about A WEEK!”
(OR SO I THOUGHT!)
I uttered those words to Forrest as he was leaving the Intensive Care Unit sometime during the week of December 8, 2009, just a couple of weeks after Thanksgiving. HAH! Not understanding the extent of my infliction I was already planning out my week once I got home. I truly didn’t think I’d be sitting here almost one year later with only four of my ten fingers working, unable to stand from a low seated position, unable to stand without holding on to something for more than a handful of seconds and only able to walk with the assistance of a walker.
Thanksgiving 2010, is just a couple of days away. Before last year Thanksgiving ushered in great feelings of joy and excitement as it symbolized the beginning of the holiday season. I love the pomp and circumstance surrounding the holidays; the malls, shopping, the weather, the lights, the colors, Christmas music, Christmas movies such as “It’s a Wonderful Life and “White Christmas”, decorating and the palatable feel of goodwill from all those you meet.
This time around, however, there is a distinct feeling of dread and a need to avoid the whole day as the sequence of events involving Thanksgiving are too close in time to the onset of GBS to disassociate it from what would become my living hell.
Thanksgiving Day 2009, was unremarkable as days go. I got up and watched the Thanksgiving Day Macys Parade as I’ve done my whole life. I fiddled about the house and soon began to get ready for the long haul down to my aunt’s home in Palm Springs where most of the family was scheduled to gather for dinner. I primarily went down there to see my ailing 96 year old grandfather.
After dinner was over Forrest and I left, it was somewhat early because many of the family failed to show up. I took leftovers home because there was no one there to eat the food.
For the next couple of days, it seemed that turkey and stuffing were the only things I ate.
On the following Monday I realized I had a bad stomach virus, didn’t think much of it. Five or six days later it seemed to die down in intensity. On the following Monday, December 7, I awoke with a sore back. I discounted it as nothing more than sleeping in a wrong position. On Tuesday, December 8, I awoke with noticeable weakness in my feet and the rest is history.
The point is the classic condition precedent to GBS is a virus attack which jumpstarts the body’s anti-bodies. Something had to trigger my immune system before it went “Postal” on my motor nerve network. (It’s interesting how my sensory network was left intact). Now I don’t know if Thanksgiving leftovers or some other food item gave me the stomach virus. I do know this, however, the cycle of food digestion suggests if it were food, it was something I ate close in time to the onset of the gastro problem. The only thing I was eating over the two days prior to the attack was leftovers.
Now you understand my apprehension towards this wonderful holiday.
HERE I AM. HERE I SIT
Other than the bountiful meal served at Thanksgiving, the holiday serves notice to give thanks for what we have. It’s easy to forget the sanctity of one’s life and the precarious hold we have on health and happiness. In some respects, I feel grateful to have so much taken from me for what is left is who I am as a person; a human being; a man. In essence I have been stripped down to my core, physically, mentally and emotionally.
I can no longer begrudge the person who views life from a different perspective after almost dying or after surviving a horrific event. I have come as close to death as I’d like to for the next fifty years. The next time the curtain calls I think I may have to take it. My life has changed; this I cannot argue. I have much to be thankful for because I am here, I can think, I can stand, I can sit, and although I can’t walk like I use to, I can try. As the 17th Century French philosopher Rene Descartes, the “Father of Modern Philosophy”, wrote: "Cogito ergo sum" (French: Je pense, donc je suis; English: I think, therefore I am; or I am thinking, therefore I exist or I do think, therefore I do exist). You get the point. For that I am grateful and thankful.
WEIGHT
I am down to 169.4 lbs., almost breaching the 168 mark. I have lost almost 135 lbs. It’s amazing, although I no longer exercise five hours a day I am still able to lose weight, albeit slowly. I can only look to my continued and unwavering strict adherence to the diet for the continued weight loss. It’s funny to see the waitresses at Bucas when I order salad and not a pasta plate.
I have decided to proceed on to my secondary goal of 155 lbs. making my total weight loss at 148 lbs. WOW! The continued loss can only make standing that much easier and therefore essential at this point to my recovery.
WALKING
Over the past couple of weeks I have been walking extensively, sometimes for several hours at any one time. The other day I took the subway with Maggie which I think aged me ten years; not Maggie but the train. Walking down the hallway in your home from the bedroom to the kitchen seems at first a nice walk. Well, try walking the length of a subway platform. You quickly recognize the need for a longer hallway. If that weren’t enough, try standing next to a five car train as it thunders into the station like a plunger in a tube pushing before it compressed air with nowhere to go but through your weakened body as if it wants to knock you over. In a taunting fashion the train stopped, luring me in the quickly opening doors. Well the doors close just as quickly. For me that’s a big problem. I then noticed a gap between the platform and the train. What would happen if my walker or polio shoe got stuck in the gap? To make matters worse the floor of the car was higher than the platform. I had to negotiate all of this in a matter of two seconds. There was no second chance.
Without thinking more about it I launched myself into the car hoping the closing doors wouldn’t nab my foot as it lumbered in behind me. I fully concentrated on the placement of my foot not knowing if I could make the step onto the train floor and hoping my knee wouldn’t buckle. Well I made it. I maneuvered to the side bar and railing trying to find a secured spot. The wheels of my walker were facing the back of the train. My relief would be short-lived. In the back of my mind I heard the faint transmission of the conductor warning the doors’ closing; for a brief moment the train lurched forward, trying to break free of the restraining brake. I knew then I was about to fall. The wheels of the walker were pointed in the opposite direction of the car’s movement so when the train moved forward the walker moved backward. Shit! My heart sank passing my stomach as it ascended into my throat. I simply didn’t have the strength to counter the walker’s movement and my hands were too weak to grab and hold onto the bar. Seeing the walker move independent of me Maggie grabbed it halting what was to be my ass on the floor.
Like a ride which won’t stop, the train barreled towards its next destination uncaring of my plight. I didn’t want to move knowing my knees would fail at the slightest jolt. Maggie embraced me and the walker forcing me into the corner where I wouldn’t fall. Jesus Christ! I’ve been riding subways and trains virtually my whole life; from New York to Washington to San Francisco, this was the first time I felt scared of the train.
My immediate thought was the reduction of speed as the train approached the next station. I told Maggie to prepare for a quick deceleration. I imagined my body being pushed by the sheer physics of the stop unable to do anything but “go with the flow.”
The train was traveling beyond fast to its next stop. I half expected to see through the large window the reflective bright glare from the sparks angling off the steel wheels as they screamed over the iron rails. Unable to firmly grab the bar with my hand I wrapped my arm around it placing it in the fold of my elbow. We waited.
Unable to find a job as a real motorman in New York, the driver was hired here to operate this speeding bullet; second rate. The recorded voice of the conductor again pierced the shrill of the train’s passage advising all of the quickly approaching station. I tensed and could feel Maggie’s grip tightened about me as we prepared for another fall. After several unnecessary jerks and restarts the train came to a rocking halt. Maggie and I heaved back and forth with each jerk of the 30 ton train. I was expecting to see the floor at any time. Once stopped we looked at each other relieved we were still standing. I sat down. It was easier that way and I didn’t want to take the chance of falling. I’m funny that way.
The fun wasn’t over yet, however. There was still the issue of getting up off the seat and getting out of the train within the handful of seconds allowed before the doors shut off any exit. We counted the seconds the doors remained opened, twelve. The doors stayed open for only twelve seconds! Seems like an eternity but when it takes an hour and a half to walk a half mile, twelve seconds seems like a blink of an eye. I decided to get prepared at the stop right before our station. We had to wait for the train to come to a complete halt before Maggie could hoist me up and then I had to maneuver to a spot where I could secure myself; once the doors opened I had to negotiate the gap between the train and the platform as well as the step down. What a pain in the ass.
We did it and we laughed because there was nothing else to do. The alternative wasn’t acceptable. The next time will be easier if for no other reason but because we know what to expect.
My hope is to be able to take the train in anticipation of working downtown.
PATIENT ADVISORY BOARD
We had our meeting two weeks ago where I was voted by the board to act as co-chairman of the committee. We had a very productive meeting where several ideas were discussed to enhance the patient experience and provide better quality of care.
SIT TO STAND
I have hit 23 ½ inches. If you recall when I left the Ranch on September 8, I was only able to stand up from as low as 27 inches. I am getting closer to the 19 inch goal.
HAVE A GREAT AND HAPPY THANKSGIVING. As always, remember “It could be worse and there is always tomorrow!”
TAKE CARE.
Thursday, November 11, 2010
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