Take note, you don't see a walker. First picture without holding on to the walker. (I am holding on to the girls!!).
Tuesday, August 31, 2010
THUMBS UP!!!
Take note, you don't see a walker. First picture without holding on to the walker. (I am holding on to the girls!!).
MY PHYSICAL THERAPISTS, ERIN AND JENNIFER.
These two ladies have been with me since I arrived at Rancho.
Monday, August 30, 2010
THE AGGREGATE EXPERIENCE - 08-26-10
EXTRA!
____________________
MORNING EDITION
_______________________________________________
"THE AGGREGATE EXPERIENCE"
08-26-10
CROSSROADS
THE ROAD TO RECOVERY
Many months ago I began a journey which would test the very foundation of my soul, spirit and will to survive. September 8, 2010, will mark the nine month anniversary of the onset of my GBS. I say mine because it’s no one else’s. The GBS I have is unlike any other GBS because I am the one who had to deal with it, who had to live with it and who ultimately conquered it despite Rancho’s initial reluctance to effectively treat it.
Yes, I have written about my hell and the daily goings on here at the “Ranch” with the hope of bringing to the reader an understanding and appreciation of what I’ve gone through, but my words could never fully detail and convey the level of frustration and despair which visited me on a daily basis. Nor could my words explain the sheer joy felt when I first touched my thumb to my finger, when I first scratched my head or the intense fear I now experience and battle every time I leave my chair to walk.
While in the hospital I created a structure and working paradigm focused on nothing more than recovery made up of two components: weight loss and strength acquisition. Whatever it took to bring my body to a place where it would thrive and my neuro pathways would rebuild, I did. In the best of circumstances, under ideal conditions, the pathways rebuild one inch per month. Think about, three feet of nerve between my hip and foot translates into thirty six months of repair! That’s what lay before me.
To be sure my recovery has been slow and arduous. It was only a few months ago my doctors thought I would never walk again. I was starting to believe them because it seemed no matter what I did, no matter how many hours I sweated and toiled exercising, I was unable to stand, let alone walk with assistance. The thought of never walking or moving my body most certainly has done something to me I still don’t understand.
To the surprise of all I began to walk beginning on June 29, while surrounded by four therapists. It wasn’t long before I was walking longer distances with fewer persons on watch. Just last week I began walking without the ever present right leg brace and with only one therapist. With walking came liberation and a strengthened hope to regain that which was abruptly and without notice taken from me, my life and independence.
To walk again, even with a walker, is simply the truest form of joy and relief one can experience. By way of measure, regaining the ability to walk can be loosely compared to the feeling a parent experiences after finding their child who was lost in a crowd, a parent’s worst nightmare. It’s probably happened to everyone. When it happens, the initial reaction of fear, despair and wonderment is devastating where your life would be readily given for the safe return of your baby. Then out of the corner of your eye, your child’s recognizable gnome like frame comes into view and you quickly focus on the eyes, searching for pain or confusion to make sure all is well; you see a soft smile form on the smooth still unaffected young face and eyes, hidden behind long hair, grow wide with recognition and love all the while reaching out with a small fat hand to your waiting embrace. For that brief moment all life has stopped around you and sound doesn’t exist with the exception of the pounding coming from your chest which is about to explode while your stomach shudders with a dry convulsive heave. The euphoria brought by the find is too overwhelming even for the dispassionate; emotion takes over and you either cry inside or outside, it doesn’t matter, you still cry because of how relieved and happy you feel.
I lose and find my child every time I walk.
My journey has now brought me to a crossroads in my recovery. I’m going home.
A new odyssey will begin far from the pink hued walls of Rancho where hotel style pictures randomly break the monotony of tunnel length hallways. And despite the frequently sterilized feel and smell of the hospital there is a certain comfort found after nine months of traversing the often dimly lit corridors in my power chair, the only noise coming from the rubber tires squeaking over the waxed linoleum floor amplified by the empty vastness of the space. I know the place and I know the people. More importantly, the people know me.
But home with my son has always been the goal and home is where I belong. While at home I’ll be met with new challenges resulting from a new level of independence and a greater degree of freedom. To help me along I will have both a power and manual chair. Notably absent will be the well crafted paradigm and structured lifestyle it took me nine months to develop. I suspect I’ll feel out of sorts initially, after all, the person who left will not be the person returning. It is imperative I maintain a strong focus on the continued objective, complete recovery and maintenance of health. Recovery will not end simply upon my return home. In fact, as a result of the increased freedom and partial success towards recovery, I’ll have to be extra vigilant to insure marked movement forward. Complacency cannot set in; consequently, I will have to increase my intensity and discipline until I advance another workable routine to see me through December which will be the next turning point in my recovery. (Stay tuned.) Another unavoidable variable is I’ll be coming home to a new place. The learning curve will have to be fast and steep. A new odyssey to be sure. I LOVE IT!
WEIGHT LOSS
The weight loss hasn’t stopped. I now weigh 188 lbs. or 85.5 kilos, for a total loss of 115 lbs. As you recall, my goal was to get to 185 lbs. by my departure date currently scheduled for September 1. With only three pounds left, the goal is very doable. As noted last week, however, I may be here for an additional week receiving another IVIG treatment in which case I’ll aim for 179 lbs. WOW!! That’s a total loss of 124 lbs. We shall see. The effort shall be made, whether the body responds is another issue.
An interesting consequence of the weight loss: I am swimming in all of my clothes. My shirts look like dresses. When I depart, I will donate all of my clothes to the hospital. There are a lot of patients here who simply don’t have anything to wear save the unappealing medical gown. Having something to wear will make the patients feel better about themselves.
I urge everyone to donate some clothing, including shoes, to the hospital.
DEPARTURE DATE
All of the doctors agree that another IVIG treatment will aid my continued recovery. The issue is one of coordination between the respective units or wards. Before the IVIG can be administered I need to be transferred to an unit equipped to handle the administration. I’ll know for certain on Monday whether the treatment will be administered before I leave, although it looks pretty certain. If so, I’ll be here through September 6, just two days shy of nine months since the onset of my GBS.
DEVELOPMENTS
By Monday, Forrest and I will be in our new digs just down the street from our current place. It’s bigger and in a very nice area of Sherman Oaks. It’s a newer building with elevators, a gym and underground parking for both cars. Forrest tells me one of the tenants is Robert Blake of Baretta fame (1975-1978). He also starred in In Cold Blood.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a continuing proverb:
Exercise caution in your business affairs, for the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.
In other words, be honest with yourself, be honest with others and appreciate the wisdom and discipline of your age.
____________________
MORNING EDITION
_______________________________________________
"THE AGGREGATE EXPERIENCE"
08-26-10
CROSSROADS
THE ROAD TO RECOVERY
Many months ago I began a journey which would test the very foundation of my soul, spirit and will to survive. September 8, 2010, will mark the nine month anniversary of the onset of my GBS. I say mine because it’s no one else’s. The GBS I have is unlike any other GBS because I am the one who had to deal with it, who had to live with it and who ultimately conquered it despite Rancho’s initial reluctance to effectively treat it.
Yes, I have written about my hell and the daily goings on here at the “Ranch” with the hope of bringing to the reader an understanding and appreciation of what I’ve gone through, but my words could never fully detail and convey the level of frustration and despair which visited me on a daily basis. Nor could my words explain the sheer joy felt when I first touched my thumb to my finger, when I first scratched my head or the intense fear I now experience and battle every time I leave my chair to walk.
While in the hospital I created a structure and working paradigm focused on nothing more than recovery made up of two components: weight loss and strength acquisition. Whatever it took to bring my body to a place where it would thrive and my neuro pathways would rebuild, I did. In the best of circumstances, under ideal conditions, the pathways rebuild one inch per month. Think about, three feet of nerve between my hip and foot translates into thirty six months of repair! That’s what lay before me.
To be sure my recovery has been slow and arduous. It was only a few months ago my doctors thought I would never walk again. I was starting to believe them because it seemed no matter what I did, no matter how many hours I sweated and toiled exercising, I was unable to stand, let alone walk with assistance. The thought of never walking or moving my body most certainly has done something to me I still don’t understand.
To the surprise of all I began to walk beginning on June 29, while surrounded by four therapists. It wasn’t long before I was walking longer distances with fewer persons on watch. Just last week I began walking without the ever present right leg brace and with only one therapist. With walking came liberation and a strengthened hope to regain that which was abruptly and without notice taken from me, my life and independence.
To walk again, even with a walker, is simply the truest form of joy and relief one can experience. By way of measure, regaining the ability to walk can be loosely compared to the feeling a parent experiences after finding their child who was lost in a crowd, a parent’s worst nightmare. It’s probably happened to everyone. When it happens, the initial reaction of fear, despair and wonderment is devastating where your life would be readily given for the safe return of your baby. Then out of the corner of your eye, your child’s recognizable gnome like frame comes into view and you quickly focus on the eyes, searching for pain or confusion to make sure all is well; you see a soft smile form on the smooth still unaffected young face and eyes, hidden behind long hair, grow wide with recognition and love all the while reaching out with a small fat hand to your waiting embrace. For that brief moment all life has stopped around you and sound doesn’t exist with the exception of the pounding coming from your chest which is about to explode while your stomach shudders with a dry convulsive heave. The euphoria brought by the find is too overwhelming even for the dispassionate; emotion takes over and you either cry inside or outside, it doesn’t matter, you still cry because of how relieved and happy you feel.
I lose and find my child every time I walk.
My journey has now brought me to a crossroads in my recovery. I’m going home.
A new odyssey will begin far from the pink hued walls of Rancho where hotel style pictures randomly break the monotony of tunnel length hallways. And despite the frequently sterilized feel and smell of the hospital there is a certain comfort found after nine months of traversing the often dimly lit corridors in my power chair, the only noise coming from the rubber tires squeaking over the waxed linoleum floor amplified by the empty vastness of the space. I know the place and I know the people. More importantly, the people know me.
But home with my son has always been the goal and home is where I belong. While at home I’ll be met with new challenges resulting from a new level of independence and a greater degree of freedom. To help me along I will have both a power and manual chair. Notably absent will be the well crafted paradigm and structured lifestyle it took me nine months to develop. I suspect I’ll feel out of sorts initially, after all, the person who left will not be the person returning. It is imperative I maintain a strong focus on the continued objective, complete recovery and maintenance of health. Recovery will not end simply upon my return home. In fact, as a result of the increased freedom and partial success towards recovery, I’ll have to be extra vigilant to insure marked movement forward. Complacency cannot set in; consequently, I will have to increase my intensity and discipline until I advance another workable routine to see me through December which will be the next turning point in my recovery. (Stay tuned.) Another unavoidable variable is I’ll be coming home to a new place. The learning curve will have to be fast and steep. A new odyssey to be sure. I LOVE IT!
WEIGHT LOSS
The weight loss hasn’t stopped. I now weigh 188 lbs. or 85.5 kilos, for a total loss of 115 lbs. As you recall, my goal was to get to 185 lbs. by my departure date currently scheduled for September 1. With only three pounds left, the goal is very doable. As noted last week, however, I may be here for an additional week receiving another IVIG treatment in which case I’ll aim for 179 lbs. WOW!! That’s a total loss of 124 lbs. We shall see. The effort shall be made, whether the body responds is another issue.
An interesting consequence of the weight loss: I am swimming in all of my clothes. My shirts look like dresses. When I depart, I will donate all of my clothes to the hospital. There are a lot of patients here who simply don’t have anything to wear save the unappealing medical gown. Having something to wear will make the patients feel better about themselves.
I urge everyone to donate some clothing, including shoes, to the hospital.
DEPARTURE DATE
All of the doctors agree that another IVIG treatment will aid my continued recovery. The issue is one of coordination between the respective units or wards. Before the IVIG can be administered I need to be transferred to an unit equipped to handle the administration. I’ll know for certain on Monday whether the treatment will be administered before I leave, although it looks pretty certain. If so, I’ll be here through September 6, just two days shy of nine months since the onset of my GBS.
DEVELOPMENTS
By Monday, Forrest and I will be in our new digs just down the street from our current place. It’s bigger and in a very nice area of Sherman Oaks. It’s a newer building with elevators, a gym and underground parking for both cars. Forrest tells me one of the tenants is Robert Blake of Baretta fame (1975-1978). He also starred in In Cold Blood.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a continuing proverb:
Exercise caution in your business affairs, for the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.
In other words, be honest with yourself, be honest with others and appreciate the wisdom and discipline of your age.
Saturday, August 21, 2010
THE AGGREGATE EXPERIENCE - 08-19-10
EXTRA!
____________________
LATE EDITION
___________________________________________________
"THE AGGREGATE EXPERIENCE"
08-19-10
ARRIVAL
FASHION SHOW
Today was the big day for the 12th Annual Fashion Show “Midnight in Milan.” After getting measured by the girls I had a friend go to Macy’s where she picked out a great looking outfit. I’m down to a 40 waste (smaller but for the excess skin), not bad. She bought a dark brown Cuban style shirt, in large as opposed to double XX, with cream color linen pants. She also bought matching sox, a classic looking ensemble. All I needed was a tan fedora and cigar and I could have been a character on “Miami Vice.” My character’s name is “Don Francisco.” I love it.
The organizers asked me to speak about my condition and how I’ve handled my recovery. They didn’t have to ask twice. Because the CEO of Rancho would be there along with administrators, doctors, therapists and other hospital staff, I prepared a speech aimed at addressing many of the concerns raised in my blog, specifically premature discharge and the need for continued therapy without so much concern with budgetary constraints. In short, it would be cheaper to rehabilitate the stricken, such as myself, with the aim of becoming tax paying members of society rather than to refuse therapy and transform them into wards of the state and thus users of tax payer money. My concern was to express the concept without overly politicizing the issue. It took me two days to write a five minute speech. (I have included the text of the speech at the end of this article.)
It was great. We chose our own entrance music; no, it wasn’t the Godfather theme, rather I chose 2001 Space Odyssey with its rousing crescendo symbolizing of the rebirth of mankind. Setting up behind a black curtain the music began building to its recognizable thunder, the audience, getting the connection and appreciating the message, immediately started clapping and shouting; the curtain opened and I walked out to cheers from the medical staff and patients who saw me walk for the first time. It was emotional for me. I made it. I was walking.
The “L” shaped runway, bedecked with rose pedals, was raised about three feet off the ground with small theatre lights bordering its edges. I walked about fifty feet without my leg brace to the microphone. (This was the only second time I walked without my brace with the first time being the day before.) I so wanted to say, “I want to thank the Academy…” I ultimately came up with another “ice breaker.” After the speech I walked back to my chair, turned around, raised my arm, stretching out my crooked fingers which I still can’t fully extend and yelled, “So long and farewell!” HAH! The wave was photographed and used in news article filed in the Long Beach Telegram.
The speech was well received by both patients and staff. (I’ve attached two small video clips. The whole speech is being transferred to a DVD.) I said what the therapists and doctors wanted to say but couldn’t.
HORSEBACK RIDING
Last week I went horseback riding. At first I wasn’t concerned with my safety and the potential for getting hurt. After all, I rode for several years along the San Gabriel River when I was younger and have ridden over the years periodically; consequently, I felt comfortable atop a 1300 pound horse. Well, let me tell you, when you can’t stand the ground looks like it’s a twenty foot drop.
As you can see from the pictures I had to drive up a ramp with my power chair in order to reach the horse. The initial plan was to stand up into my walker and somehow drape my right leg over the horse’s back. Well, I’d have more success losing 100 lbs., duh, I already did that; you get the point: how in the hell was I going to swing my right leg over the horse’s back while standing on my left leg, a presumptive mistake at best.
The 1300 pound animal slowly approached the ramp led by a young female assistant. Standing next to me was the irreplaceable owner of the stable, Darlene, a cowgirl with a Capital “C” and an astute reader of body language whether it be animal or human. I stood up from my chair in the small area atop the ramp, about four feet above the ground. It could have been twenty feet, it didn’t matter, if I fell bones would break. With only inches on either side of me I slowly shimmied over to the waiting hoofed one a half inch at a time. After a few moments Darlene realized the impossibility of the task. She then began to prepare the “lift”.
The horse was sent out of the staging area while the lift was prepared for service. As the lift traveled along its dirty track a loud high pitch shriek filled the air which frightened the steed as he reentered the staging area; he bolted almost running over the leading assistant. At Darlene’s direction the assistant re-circled the area to refocus the horse’s attention away from the sound. The horse was visibly agitated. Darlene recognized the horse’s distress as well as my own. All I could picture was flipping backward over the horse’s butt as it galloped off into Western sunset, sort of like an old Roy Rogers scene. After a few reassuring words I felt better, I don’t know about the horse.
The lift wasn’t going to work. It was placed back into its protective metal case. The horse was no longer agitated. I was still standing waiting for something to happen. The sun was making me hot.
Darlene then suggested the obvious; just pick me up and place my bottom on the horse’s back. My trunk control is strong enough to stay atop the horse while my right leg is positioned. The whole mounting process is recorded on my blog.
WEIGHT LOSS
Over the past week I’ve lost another five pounds bringing my weight down to 191 lbs. for a total loss of 112 lbs. Before I leave here I want to get to 185 lbs.
DEPARTURE DATE
The plan is still September 1, however, there’s talk of keeping me here an additional week more to receive another round of IVIG.
Forrest and I will be in our new place by next weekend.
SPEECH
REHABILITATION
Hi, my name is Yancy Miller. As a kid I always dreamed about doing certain things in life; recovering from a rare condition the cause of which was unclear, the cure of which was unsure and how the medication administered worked, uncertain, and appearing in a fashion show while holding on to a walker with a woman holding on to my backside was certainly not on the list.
I have been hospitalized since Dec. 8, 2009, and at Rancho Los Amigos since Dec. 14, recovering from Gillian Barre Syndrome or GBS. GBS is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. Without warning I was left paralyzed from neck down within 24 hours of its onset. My life and family were literally turned upside down.
On December 7, I awoke to a normal day of work and play. On Dec. 8, I awoke to what would become a living hell where my life extended no farther than my ability to think and speak. That’s was the essence of my existence. What I was as a man, as an independent person became a prisoner in my own body. Even the most simplest of function was now in the hands of someone else. To be sure, the paralysis was mind numbing, but having to ask for help was a major source of my torture. There was no waking up from this nightmare. And when I did sleep, the nightmares became more hellish as my mind would take me to places I didn’t want to go.
I now walk and stand before you as a result of therapy, diet and rehabilitation.
As I look out into the audience I cannot help but notice the diversity of the attendees and patients. Each one of us comes here for different reasons, from different economic and educational backgrounds and from different ethnicities and cultures.
The level of diversity doesn’t stop with the patients, though. It is equally evident among the staff, from the doctors to the nurses to the therapists and supporting staff . . ., many regions of the world are represented under the roof of this Rehabilitation Center. Hell, we even have someone here from OHIO, my Erin.
Diversity aside, and in fact, despite the diversity, there is something more remarkable, more fundamental about Rancho which provides the basis for their continued success as a center for rehabilitation; there is a sense of purpose shared here which is the common denominator running through all of us. The sense of purpose is the deep rooted desire and orchestrated push between therapist and patient to recover from the physical blight which brought us together for this brief moment in time. Most everyone here knows how hard I have worked since I arrived here. But I couldn’t have done this alone, I couldn’t have done this without my therapists.
As therapists, you have to hold sacred a simple truism, recovery brings back independence. “I don’t want to ask for help!” Independence brings back pride and pride brings back the will to live. It’s that simple. That’s the driving force behind rehabilitation.
But someone has to first deliver the medical service, the rehabilitation: that someone is the therapist. You therapists are on the front line charged with the duty of effectively rebuilding the mind and spirit as well as the physical bodies of the injured ones. Without you, there would be no recovery. Without recovery there would be no rehabilitation. Without rehabilitation there would be no Rancho National Rehabilitation Center. Rancho would become merely a depository for society’s “misfits”, a way station before the individual’s final destination.
I am the product of what therapy can do. When I arrived, I weighed 303 lbs of dead weight unable to even touch my fingers together, or to roll over or sit up. Today I weighed in at 191 lbs. losing 112 lbs. My therapists, Erin, Jennifer, Heidi and Chris stepped up to the challenge and made it their respective goal to see me recover. I have to also mention the other therapists with whom I worked or just spoke to because each played a significant role in keeping me sane and wanting to come back for more. Please forgive me if I don’t call out your name, but I have to thank sweet Alice, insatiable Tim who is the only person I have ever met who can talk about food for a complete hour of therapy, Temple, Allana, Lisa, Eva, Becky, Jerry, Amanda and Kathy. Each one of you helped me in many ways.
But, I want to get back to two young beautiful women who have been with me since day one, Erin and Jennifer. They make Rancho special. To me they are why Rancho exists. There were times when it seemed nothing would work, where I would hit a wall, then Erin would think of some new approach and progress would be made. There were other times when the weight of the day was just too much and her simple look of reassurance would get me through the day. And it wasn’t fun: poor Jen has been slapped, hit, cut, and sweated on over the past eight months and still had a smile for me the next day.
To be sure, my recovery has been long and frustrating. I am a demanding person, I demand much from myself as I do from them. Erin never quit on me; consequently, I couldn’t quit on myself. It’s interesting; I wanted to work hard so I wouldn’t disappoint her. It worked and here I am.
The problem with all of this is that often the therapists have little leeway to provide the degree of therapy needed to effectuate the level of recovery possible for a particular patient. This leads to the patient being summarily discharged before he/she reaches their full recovery potential. I understand the economics of the situation, however, we are dealing with human beings who by their very nature want to reenter mainstream society and become productive again. We must not allow ourselves to view the practice of medicine as a managed health care assembly line allowing each station a prescribed amount of time to replace, mend or remove the defective part before the patient is moved on to the next station and ultimately out the door, irrespective of whether the tires inflate or the doors properly open and close.
You tell me, what’s better for society, to abandon care and relegate the individual to becoming a lifetime ward of the state, or to expend the time and effort to get them back as productive tax paying members of society rather than users of tax payer’s money.
When a decision has to be made regarding what would otherwise be a premature discharge, think about me. I was to be discharged 30 days after my arrival. Seven months later, look at me. To you therapists, isn’t this what’s it’s all about? To the administration, isn’t my recovery what Rancho Los Amigos Rehabilitation Center is all about? The answer is self evident. There simply is no argument.
In closing I want to thank P.A. Sally Davis, Gilbert Salinas and Judy Salazar. To say there is a debt of gratitude would be an understatement.
Thank you.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
In other words, chill. Don’t be so hard on yourself. You’re better than you think you are.
____________________
LATE EDITION
___________________________________________________
"THE AGGREGATE EXPERIENCE"
08-19-10
ARRIVAL
FASHION SHOW
Today was the big day for the 12th Annual Fashion Show “Midnight in Milan.” After getting measured by the girls I had a friend go to Macy’s where she picked out a great looking outfit. I’m down to a 40 waste (smaller but for the excess skin), not bad. She bought a dark brown Cuban style shirt, in large as opposed to double XX, with cream color linen pants. She also bought matching sox, a classic looking ensemble. All I needed was a tan fedora and cigar and I could have been a character on “Miami Vice.” My character’s name is “Don Francisco.” I love it.
The organizers asked me to speak about my condition and how I’ve handled my recovery. They didn’t have to ask twice. Because the CEO of Rancho would be there along with administrators, doctors, therapists and other hospital staff, I prepared a speech aimed at addressing many of the concerns raised in my blog, specifically premature discharge and the need for continued therapy without so much concern with budgetary constraints. In short, it would be cheaper to rehabilitate the stricken, such as myself, with the aim of becoming tax paying members of society rather than to refuse therapy and transform them into wards of the state and thus users of tax payer money. My concern was to express the concept without overly politicizing the issue. It took me two days to write a five minute speech. (I have included the text of the speech at the end of this article.)
It was great. We chose our own entrance music; no, it wasn’t the Godfather theme, rather I chose 2001 Space Odyssey with its rousing crescendo symbolizing of the rebirth of mankind. Setting up behind a black curtain the music began building to its recognizable thunder, the audience, getting the connection and appreciating the message, immediately started clapping and shouting; the curtain opened and I walked out to cheers from the medical staff and patients who saw me walk for the first time. It was emotional for me. I made it. I was walking.
The “L” shaped runway, bedecked with rose pedals, was raised about three feet off the ground with small theatre lights bordering its edges. I walked about fifty feet without my leg brace to the microphone. (This was the only second time I walked without my brace with the first time being the day before.) I so wanted to say, “I want to thank the Academy…” I ultimately came up with another “ice breaker.” After the speech I walked back to my chair, turned around, raised my arm, stretching out my crooked fingers which I still can’t fully extend and yelled, “So long and farewell!” HAH! The wave was photographed and used in news article filed in the Long Beach Telegram.
The speech was well received by both patients and staff. (I’ve attached two small video clips. The whole speech is being transferred to a DVD.) I said what the therapists and doctors wanted to say but couldn’t.
HORSEBACK RIDING
Last week I went horseback riding. At first I wasn’t concerned with my safety and the potential for getting hurt. After all, I rode for several years along the San Gabriel River when I was younger and have ridden over the years periodically; consequently, I felt comfortable atop a 1300 pound horse. Well, let me tell you, when you can’t stand the ground looks like it’s a twenty foot drop.
As you can see from the pictures I had to drive up a ramp with my power chair in order to reach the horse. The initial plan was to stand up into my walker and somehow drape my right leg over the horse’s back. Well, I’d have more success losing 100 lbs., duh, I already did that; you get the point: how in the hell was I going to swing my right leg over the horse’s back while standing on my left leg, a presumptive mistake at best.
The 1300 pound animal slowly approached the ramp led by a young female assistant. Standing next to me was the irreplaceable owner of the stable, Darlene, a cowgirl with a Capital “C” and an astute reader of body language whether it be animal or human. I stood up from my chair in the small area atop the ramp, about four feet above the ground. It could have been twenty feet, it didn’t matter, if I fell bones would break. With only inches on either side of me I slowly shimmied over to the waiting hoofed one a half inch at a time. After a few moments Darlene realized the impossibility of the task. She then began to prepare the “lift”.
The horse was sent out of the staging area while the lift was prepared for service. As the lift traveled along its dirty track a loud high pitch shriek filled the air which frightened the steed as he reentered the staging area; he bolted almost running over the leading assistant. At Darlene’s direction the assistant re-circled the area to refocus the horse’s attention away from the sound. The horse was visibly agitated. Darlene recognized the horse’s distress as well as my own. All I could picture was flipping backward over the horse’s butt as it galloped off into Western sunset, sort of like an old Roy Rogers scene. After a few reassuring words I felt better, I don’t know about the horse.
The lift wasn’t going to work. It was placed back into its protective metal case. The horse was no longer agitated. I was still standing waiting for something to happen. The sun was making me hot.
Darlene then suggested the obvious; just pick me up and place my bottom on the horse’s back. My trunk control is strong enough to stay atop the horse while my right leg is positioned. The whole mounting process is recorded on my blog.
WEIGHT LOSS
Over the past week I’ve lost another five pounds bringing my weight down to 191 lbs. for a total loss of 112 lbs. Before I leave here I want to get to 185 lbs.
DEPARTURE DATE
The plan is still September 1, however, there’s talk of keeping me here an additional week more to receive another round of IVIG.
Forrest and I will be in our new place by next weekend.
SPEECH
REHABILITATION
Hi, my name is Yancy Miller. As a kid I always dreamed about doing certain things in life; recovering from a rare condition the cause of which was unclear, the cure of which was unsure and how the medication administered worked, uncertain, and appearing in a fashion show while holding on to a walker with a woman holding on to my backside was certainly not on the list.
I have been hospitalized since Dec. 8, 2009, and at Rancho Los Amigos since Dec. 14, recovering from Gillian Barre Syndrome or GBS. GBS is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. Without warning I was left paralyzed from neck down within 24 hours of its onset. My life and family were literally turned upside down.
On December 7, I awoke to a normal day of work and play. On Dec. 8, I awoke to what would become a living hell where my life extended no farther than my ability to think and speak. That’s was the essence of my existence. What I was as a man, as an independent person became a prisoner in my own body. Even the most simplest of function was now in the hands of someone else. To be sure, the paralysis was mind numbing, but having to ask for help was a major source of my torture. There was no waking up from this nightmare. And when I did sleep, the nightmares became more hellish as my mind would take me to places I didn’t want to go.
I now walk and stand before you as a result of therapy, diet and rehabilitation.
As I look out into the audience I cannot help but notice the diversity of the attendees and patients. Each one of us comes here for different reasons, from different economic and educational backgrounds and from different ethnicities and cultures.
The level of diversity doesn’t stop with the patients, though. It is equally evident among the staff, from the doctors to the nurses to the therapists and supporting staff . . ., many regions of the world are represented under the roof of this Rehabilitation Center. Hell, we even have someone here from OHIO, my Erin.
Diversity aside, and in fact, despite the diversity, there is something more remarkable, more fundamental about Rancho which provides the basis for their continued success as a center for rehabilitation; there is a sense of purpose shared here which is the common denominator running through all of us. The sense of purpose is the deep rooted desire and orchestrated push between therapist and patient to recover from the physical blight which brought us together for this brief moment in time. Most everyone here knows how hard I have worked since I arrived here. But I couldn’t have done this alone, I couldn’t have done this without my therapists.
As therapists, you have to hold sacred a simple truism, recovery brings back independence. “I don’t want to ask for help!” Independence brings back pride and pride brings back the will to live. It’s that simple. That’s the driving force behind rehabilitation.
But someone has to first deliver the medical service, the rehabilitation: that someone is the therapist. You therapists are on the front line charged with the duty of effectively rebuilding the mind and spirit as well as the physical bodies of the injured ones. Without you, there would be no recovery. Without recovery there would be no rehabilitation. Without rehabilitation there would be no Rancho National Rehabilitation Center. Rancho would become merely a depository for society’s “misfits”, a way station before the individual’s final destination.
I am the product of what therapy can do. When I arrived, I weighed 303 lbs of dead weight unable to even touch my fingers together, or to roll over or sit up. Today I weighed in at 191 lbs. losing 112 lbs. My therapists, Erin, Jennifer, Heidi and Chris stepped up to the challenge and made it their respective goal to see me recover. I have to also mention the other therapists with whom I worked or just spoke to because each played a significant role in keeping me sane and wanting to come back for more. Please forgive me if I don’t call out your name, but I have to thank sweet Alice, insatiable Tim who is the only person I have ever met who can talk about food for a complete hour of therapy, Temple, Allana, Lisa, Eva, Becky, Jerry, Amanda and Kathy. Each one of you helped me in many ways.
But, I want to get back to two young beautiful women who have been with me since day one, Erin and Jennifer. They make Rancho special. To me they are why Rancho exists. There were times when it seemed nothing would work, where I would hit a wall, then Erin would think of some new approach and progress would be made. There were other times when the weight of the day was just too much and her simple look of reassurance would get me through the day. And it wasn’t fun: poor Jen has been slapped, hit, cut, and sweated on over the past eight months and still had a smile for me the next day.
To be sure, my recovery has been long and frustrating. I am a demanding person, I demand much from myself as I do from them. Erin never quit on me; consequently, I couldn’t quit on myself. It’s interesting; I wanted to work hard so I wouldn’t disappoint her. It worked and here I am.
The problem with all of this is that often the therapists have little leeway to provide the degree of therapy needed to effectuate the level of recovery possible for a particular patient. This leads to the patient being summarily discharged before he/she reaches their full recovery potential. I understand the economics of the situation, however, we are dealing with human beings who by their very nature want to reenter mainstream society and become productive again. We must not allow ourselves to view the practice of medicine as a managed health care assembly line allowing each station a prescribed amount of time to replace, mend or remove the defective part before the patient is moved on to the next station and ultimately out the door, irrespective of whether the tires inflate or the doors properly open and close.
You tell me, what’s better for society, to abandon care and relegate the individual to becoming a lifetime ward of the state, or to expend the time and effort to get them back as productive tax paying members of society rather than users of tax payer’s money.
When a decision has to be made regarding what would otherwise be a premature discharge, think about me. I was to be discharged 30 days after my arrival. Seven months later, look at me. To you therapists, isn’t this what’s it’s all about? To the administration, isn’t my recovery what Rancho Los Amigos Rehabilitation Center is all about? The answer is self evident. There simply is no argument.
In closing I want to thank P.A. Sally Davis, Gilbert Salinas and Judy Salazar. To say there is a debt of gratitude would be an understatement.
Thank you.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
In other words, chill. Don’t be so hard on yourself. You’re better than you think you are.
Wednesday, August 18, 2010
Video clips - Riding the Bucking Bronco
Just click on the photos to engage the video clips. Check out the video of me mounting the horse. Darlene, the gal helping me did a great job of assuring me and calming the horse.
THE ART OF GRACEFULNESS
This is what happens when you're too weak to stand on your own. Let me when you can't walk, the ground looks extremely far. But we successfully mounted and rode the steed.
Monday, August 16, 2010
Friday, August 13, 2010
Walking 08-13-10 - Trough Walker
Now we are down to one person watching me. A big difference from the first walk.
Thursday, August 12, 2010
THE AGGREGATE EXPERIENCE - 08-12-10
EXTRA!
____________________
MORNING EDITION
_________________________________________________________
"THE AGGREGATE EXPERIENCE"
08-12-10
QUICK UPDATE
This is going to be short and sweet. I now weigh 196.1 lbs or 89.1 kilos for a total loss of 107 lbs. or 48.6 kilos. I still have 21 lbs. to hit my target weight. The interesting fact is I’m not riding the arm/leg bike as much as before. Just prior to my transfer to this unit two weeks ago I was exercising on the bike two hours a day. Last week I rode about five hours in total, far short of my usual mark. I will have to pick it up over the next three weeks to insure continued weight loss. I want to hit 185 lbs before I leave here.
UPCOMING EVENTS
On September 18, 2010 Rancho is holding a track event for patients. They have a 5k event for the more capable runners and a 1k for the more restricted individuals: 1 Kilometer or 0.62 Miles. I will be entering the 1k event where I will be “walking” with a walker. It’s not much but it’s a start.
Next week they’re holding a fashion show where the patients will walk or roll down the “runway”. I’ve been talked into entering but the only problem is I don’t have anything to wear. HAH! Everything is too big. Today the girls will measure my waist while I’m standing and I’ll have a friend go shopping for me. It should be pretty cool to get dressed in something other than shorts and a pullover.
And on Monday I’m scheduled to go horseback riding. I used to ride horses a lot when I was younger and love to ride. This should be a blast.
Despite all of the gaiety and frolic, I am still working hard at maintaining my exercise and dietary regimen. I now have less than three weeks here and I have to make every minute count. The pressure is on with the two week extension. I have to perform. I love it!
Remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Thank you.
____________________
MORNING EDITION
_________________________________________________________
"THE AGGREGATE EXPERIENCE"
08-12-10
QUICK UPDATE
This is going to be short and sweet. I now weigh 196.1 lbs or 89.1 kilos for a total loss of 107 lbs. or 48.6 kilos. I still have 21 lbs. to hit my target weight. The interesting fact is I’m not riding the arm/leg bike as much as before. Just prior to my transfer to this unit two weeks ago I was exercising on the bike two hours a day. Last week I rode about five hours in total, far short of my usual mark. I will have to pick it up over the next three weeks to insure continued weight loss. I want to hit 185 lbs before I leave here.
UPCOMING EVENTS
On September 18, 2010 Rancho is holding a track event for patients. They have a 5k event for the more capable runners and a 1k for the more restricted individuals: 1 Kilometer or 0.62 Miles. I will be entering the 1k event where I will be “walking” with a walker. It’s not much but it’s a start.
Next week they’re holding a fashion show where the patients will walk or roll down the “runway”. I’ve been talked into entering but the only problem is I don’t have anything to wear. HAH! Everything is too big. Today the girls will measure my waist while I’m standing and I’ll have a friend go shopping for me. It should be pretty cool to get dressed in something other than shorts and a pullover.
And on Monday I’m scheduled to go horseback riding. I used to ride horses a lot when I was younger and love to ride. This should be a blast.
Despite all of the gaiety and frolic, I am still working hard at maintaining my exercise and dietary regimen. I now have less than three weeks here and I have to make every minute count. The pressure is on with the two week extension. I have to perform. I love it!
Remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Thank you.
Wednesday, August 11, 2010
Transfer With Slide Board
Sequence of pictures showing transfer from bed to power chair at 6:30 in the morning.
Tuesday, August 10, 2010
"THE AGGREGATE EXPERIENCE" 08-10-10
EXTRA!
____________________
MORNING EDITION
_____________________________________________________
"THE AGGREGATE EXPERIENCE"
08-10-10
EXTENSION
RESOLUTION
Yes, logic and rational can prevail over bureaucratically inspired intellectual malaise. (Wow, that’s a mouthful! HAH!) I was beginning to feel the “art of thinking” was lost, but once again my faith in man has been reignited. It is possible for people to push back from the desk, drop the proverbial pencil, look past the cue card and express independent thought based on evidence and information not reviewed and spoon fed by absentee suits who readily view the practice of medicine as a managed assembly line allowing each station a prescribed amount of time to replace, mend or remove the defective part before you’re moved on to the next station and ultimately out the door, irrespective of whether the tires inflate or the doors properly open and close. Do you sense some frustration?
Today, we have a far different conclusion than expected to the points raised in the last TAE regarding my pending and premature discharge. I half expected this would be my last full week here and discharged without being functionally able to care for myself. The untimeliness of the proposed discharge date becomes painfully evident when viewed against my substantial progress over the last several weeks and the recent administration of the IVIG.
Well, the decision was made today to extend my stay through August. SIMPLY FANTASTIC!! I am terribly excited about the decision and grateful to those who raised the issue on my behalf. The decision would not have been made in my favor without their voices being heard. My voice certainly was not enough. (Below I have attached my talking point paper circulated among some of the faithful prior to the meeting.)
The decision provides me with hope for further recovery and reinvigorated incentive to continue working hard without the constant fear of being returned home crippled and unable to care for myself.
The end of August may not seem like enough time, however it is and I have to leave at some point. Five weeks ago, walking was a dream with little reality. I am now walking “with assurance of stride.” I’ve come a long way and in 21 days from now I will be a long way from here.
I’ll be home.
Remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.
(TALKING POINTS)
Here are my thoughts which I feel would be in your province to state given you’ve been my PT since day one.
1) There is no question that over the past couple of months my progression curve has increased at a greater rate than at any time since I’ve been here. This is quite evident in my increased walking ability which seems to improve on a daily basis. In just about 30 days I went from the R-Joe walker with four people, walking fifty paces, to walking unassisted with one therapist for two hours per day all over JPI. I’ve walked outside and on carpet. Keep in mind the few times I walked during the 30 days.
2) We have talked at length about the timing of the IVIG treatment. Despite the want of clinical studies documenting the positive effects of the IVIG, my rapid progression appears to coincide with the administration of the serum on two separate occasions. In point of fact, you personally heard Dr. Mallet indicate I should receive another round of the serum. This would not have been suggested if he did not feel reasonably confident of the serum’s positive effects. What’s important to realize is that despite the cost and expense of administering the IVIG, Dr. Mallet feels the cost is certainly outweighed by the benefit.
Now here is where the argument takes shape.
3) Benefit from the IVIG can only be measured by the amount of progress a person makes subsequent to its administration. Progress, in large part, is the result of therapy. Looked at another way, without therapy there can’t be progress. How would it be measured? (stay with me) With therapy one can objectively see and measure progress. Without progress the IVIG simply becomes irrelevant.
4) The administration of IVIG would not occur but for the expectation of progress from the recipient. Without noted progress, there would be no administration of the IVIG. Due to the high cost of the IVIG it would be a wasted resource to administer such an expensive medicine without a commensurate benefit experienced by the recipient.
5) Consequently, in order to justify the administration of the IVIG there has to be a measured benefit to the recipient.
6) We have already determined that I have benefited from the IVIG previously administered. Therefore its initial administration was justified.
7) I received the last treatment just two weeks ago. Its effects don’t manifest for at least three weeks and continue on for several weeks thereafter.
8) My proposed discharge date is around the time the effects of the IVIG should be observed.
9) Should I be discharged, I will no longer receive therapy or at best it will be substantially reduced. Remember I have been disqualified by Access because I can read and make change. My son works and will begin school in two weeks and will be unable to transport me to the facility.
10) As argued above, without therapy there is no progress. Without progress the administration of the expensive IVIG would be wasted and irrelevant. Let the IVIG have a chance to do what it’s supposed to do. The benefit is too great to be wasted.
11) Now the flip side to the argument is simple. Given my rate of progression the two additional weeks would provide me with the tools and ability to further control my environment without the need for third party intervention. Surely, from a cost/benefit analysis, the physical enhancement I would experience would warrant the short extended stay.
12) The bottom line is I would greatly and substantially benefit from the short but crucial extension. Don’t let the administration of the IVIG become irrelevant. The benefit is too tangible and certain and should not be dismissed, wasted or overlooked.
Lastly, my improvement in just one month cannot be understated. Just think how much I will improve with my stay extended through August. I will be able to literally walk out of here.
Thank you.
____________________
MORNING EDITION
_____________________________________________________
"THE AGGREGATE EXPERIENCE"
08-10-10
EXTENSION
RESOLUTION
Yes, logic and rational can prevail over bureaucratically inspired intellectual malaise. (Wow, that’s a mouthful! HAH!) I was beginning to feel the “art of thinking” was lost, but once again my faith in man has been reignited. It is possible for people to push back from the desk, drop the proverbial pencil, look past the cue card and express independent thought based on evidence and information not reviewed and spoon fed by absentee suits who readily view the practice of medicine as a managed assembly line allowing each station a prescribed amount of time to replace, mend or remove the defective part before you’re moved on to the next station and ultimately out the door, irrespective of whether the tires inflate or the doors properly open and close. Do you sense some frustration?
Today, we have a far different conclusion than expected to the points raised in the last TAE regarding my pending and premature discharge. I half expected this would be my last full week here and discharged without being functionally able to care for myself. The untimeliness of the proposed discharge date becomes painfully evident when viewed against my substantial progress over the last several weeks and the recent administration of the IVIG.
Well, the decision was made today to extend my stay through August. SIMPLY FANTASTIC!! I am terribly excited about the decision and grateful to those who raised the issue on my behalf. The decision would not have been made in my favor without their voices being heard. My voice certainly was not enough. (Below I have attached my talking point paper circulated among some of the faithful prior to the meeting.)
The decision provides me with hope for further recovery and reinvigorated incentive to continue working hard without the constant fear of being returned home crippled and unable to care for myself.
The end of August may not seem like enough time, however it is and I have to leave at some point. Five weeks ago, walking was a dream with little reality. I am now walking “with assurance of stride.” I’ve come a long way and in 21 days from now I will be a long way from here.
I’ll be home.
Remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.
(TALKING POINTS)
Here are my thoughts which I feel would be in your province to state given you’ve been my PT since day one.
1) There is no question that over the past couple of months my progression curve has increased at a greater rate than at any time since I’ve been here. This is quite evident in my increased walking ability which seems to improve on a daily basis. In just about 30 days I went from the R-Joe walker with four people, walking fifty paces, to walking unassisted with one therapist for two hours per day all over JPI. I’ve walked outside and on carpet. Keep in mind the few times I walked during the 30 days.
2) We have talked at length about the timing of the IVIG treatment. Despite the want of clinical studies documenting the positive effects of the IVIG, my rapid progression appears to coincide with the administration of the serum on two separate occasions. In point of fact, you personally heard Dr. Mallet indicate I should receive another round of the serum. This would not have been suggested if he did not feel reasonably confident of the serum’s positive effects. What’s important to realize is that despite the cost and expense of administering the IVIG, Dr. Mallet feels the cost is certainly outweighed by the benefit.
Now here is where the argument takes shape.
3) Benefit from the IVIG can only be measured by the amount of progress a person makes subsequent to its administration. Progress, in large part, is the result of therapy. Looked at another way, without therapy there can’t be progress. How would it be measured? (stay with me) With therapy one can objectively see and measure progress. Without progress the IVIG simply becomes irrelevant.
4) The administration of IVIG would not occur but for the expectation of progress from the recipient. Without noted progress, there would be no administration of the IVIG. Due to the high cost of the IVIG it would be a wasted resource to administer such an expensive medicine without a commensurate benefit experienced by the recipient.
5) Consequently, in order to justify the administration of the IVIG there has to be a measured benefit to the recipient.
6) We have already determined that I have benefited from the IVIG previously administered. Therefore its initial administration was justified.
7) I received the last treatment just two weeks ago. Its effects don’t manifest for at least three weeks and continue on for several weeks thereafter.
8) My proposed discharge date is around the time the effects of the IVIG should be observed.
9) Should I be discharged, I will no longer receive therapy or at best it will be substantially reduced. Remember I have been disqualified by Access because I can read and make change. My son works and will begin school in two weeks and will be unable to transport me to the facility.
10) As argued above, without therapy there is no progress. Without progress the administration of the expensive IVIG would be wasted and irrelevant. Let the IVIG have a chance to do what it’s supposed to do. The benefit is too great to be wasted.
11) Now the flip side to the argument is simple. Given my rate of progression the two additional weeks would provide me with the tools and ability to further control my environment without the need for third party intervention. Surely, from a cost/benefit analysis, the physical enhancement I would experience would warrant the short extended stay.
12) The bottom line is I would greatly and substantially benefit from the short but crucial extension. Don’t let the administration of the IVIG become irrelevant. The benefit is too tangible and certain and should not be dismissed, wasted or overlooked.
Lastly, my improvement in just one month cannot be understated. Just think how much I will improve with my stay extended through August. I will be able to literally walk out of here.
Thank you.
Monday, August 9, 2010
THE AGGREGATE EXPERIENCE - 08-08-10
EXTRA!
____________________
LATE EDITION
____________________________________________________
"THE AGGREGATE EXPERIENCE"
08-08-10
ASCENSION
PROLOGUE
(Diversion)
I WAS DYING before the onset of this unforeseen paralyzing condition. No, not in the metaphysical sense (we are all going to die). Simply put, my life style was going to get the best of me. I was drinking too much, eating too much and exercising too little, a prescription for disaster. To make matters worse, I didn’t see it coming, and what I saw I reasoned could be fixed “tomorrow.”
So what happens? I didn’t get a stroke, heart attack or diabetes. I came down with some rare condition totally unrelated to my lifestyle. GUILLIAN BARRE . Cruel irony?
I’ve always lived my life according to a strong work ethic matched by a strong play ethic. Given my profession I frequently entertained clients at various nightspots throughout Los Angeles and Beverly Hills. I did not have a regular eight to five job. As part of my employ I also traveled extensively throughout the U.S. and abroad either with clients or on their behalf where entertaining was always part of the agenda. “It was part of the job.”
As I review my life’s markers the shift in focus away from diligence and into dalliance is apparent, however, as events played out over any given time frame the impact of any one event in isolation is nominal and of very little import. Sure, certain things have raised the eyebrow of concern, however, I have always been able to overcome adversity by sheer force of personality, arrogance and determination; consequently, I was never overly taken by any singular event.
You have to understand connecting life’s dots isn’t something we readily do. Introspection is not practiced out of laziness, fear of what we’ll see or because time has run out.
How many bad relationships have we been in where the struggle is apparent but the fix is elusive and before you know it five, ten or fifteen years have gone by? You stay because the shift away from the beginning is so slight as to be imperceptible and thus tolerable. The passage of life is like watching hair grow, you don’t know it’s long until it’s cut.
It’s only when life’s events are viewed in the aggregate where divergence from life’s mission statement can be assessed.
In my eight month stay here I’ve come to realize I diverted from my life mission statement.
Through determination and strict adherence to structure the diversion has been corrected and a strident and well structured path will continue to be the goal. I have worked too hard over a long period of time and have reaped tremendous health benefits as a direct result of this change to have it wasted and trifled.
As I recover and come out from the other end of this living hell, I am met with a sense of purpose and resolve not felt for a number of years. GBS may have taken something from me, but I take from it much more. I have created a new life.
Chapter one
- Liberation -
Exactly eight months ago to the day I awoke to what would become a hell by anyone’s measure. Although I have tried, the words on the page fall substantially short of adequately describing the level of fear and initial resignation I felt when faced with a tracheotomy and unable to move a muscle. Because of the quickness with which my body degenerated, death was something I had to seriously consider as an unwanted option.
As it turned out, the paralysis stopped at my neck leaving my brain free to think and my mouth free to express generated thought. The ability to think and express would prove to be vital to my recovery.
On June 29, I took my first steps with the help of four therapists and a huge and sturdy walker which can be used as an engine hoist. There was a therapist pulling the walker, one on my right leg, one walking along side holding on to a belt keeping me from falling and one following me with my power chair in case I fell or needed to rest. When I first walked, the therapist literally counted the number of steps I took to measure my progress. The steps were so few they were easy to count. Although I didn’t fall, I needed to rest several times despite the short distance.
Over the past thirty odd days I have walked several times and graduated to a lighter walker. The heavy steel walker was replaced by a walker made of aluminum tubing which I push to move forward, the one you always see with tennis balls attached. At first I was scared to use the walker thinking it would crash under my weight. Well, the walker held up and I walked even farther, too many steps to count.
During the last week, my progress has been truly remarkable. From four therapists assisting I dropped down to three then two, now I walk with just one therapist. Whereas I was walking only about once a week because of the number of assistants needed I now walk every day and walked twice on Thursday, each time clocking in about one hour of walking. I even ventured outside with the walker and walked through the driveway gauging my ability to handle different terrain. Leaving the building was a little precarious because of the slight ramp leading outside the door, but I nevertheless successfully negotiated the decline out and incline into the building upon my return. I also was even able to walk over a soft ply carpet where I thought I would have some difficulty from getting my shoe stuck in the carpet.
Prior to the last couple of weeks I thought my progress would be slower. I was anticipating taking a couple of more months to get where I am today. I am truly amazed at how far I’ve come since my first walk. It’s like a totally different person. My improvement has even impressed the therapists. If you remember, I recently received the IVIG serum. Despite the want of clinical studies documenting the positive effects of the IVIG, my rapid progression appears to coincide with the administration of the serum on two separate occasions. In point of fact, the administering doctor indicated on Friday that I should receive another round of the serum. This would not have been suggested if he did not feel reasonably confident of the serum’s positive effects. What’s important to realize is that despite the cost and expense of administering the IVIG, he feels the cost is certainly outweighed by the benefit. As for me, if it helps, and I don’t know if it is, I’ll take it and suffer through the side effects of fever and a headache.
WEIGHT
Since leaving Unit 903 I’ve been weighed only once coming in at 199.2 lbs. or 90.5 kg. I suspect I’ll come in at about 197 lbs./89.5 kg when I’m weighed Wednesday morning. It’s interesting, although still concerned with my weight loss I am no longer overly consumed with it. I know I will continue to lose weight while maintaining my diet and exercise regimen. I’m sort of on auto pilot, it will happen. My concern has rightly shifted to walking and increasing my independence from third party intervention. I like the phrase “assurance of stride.”
DEPARTURE DATE
Here is where we run into an ongoing debate. Since my arrival at Rancho Los Amigos the administration has been trying to send me home or to a nursing facility. Within 28 days of my arrival the doctors held a meeting with my family to discuss my discharge and transfer the charge of my care to my 21 year old son, Forrest. At this time I was still completely paralyzed with only a modicum of movement in my left arm. I was totally and completely dependent on others for everything related to my survival and mental well being, from eating to wiping lint off my face. My hands and fingers were incapable of any movement and function. The only way to summon the nurse or to control the TV was to blow air through plastic tubes. It’s funny now, but if I missed a channel I had to blow through the entire channel sequence to get to the right position.
After listening to the doctor move headlong into his sales pitch (for a moment he sounded like he was selling a used car) I realized the presumption he was using as his first premise was false and therefore the whole argument was invalid. He presumed my son could take care of me. I quickly pointed out the absurdity of his position. “You’re suggesting that six medical professionals working round the clock seven days a week are going to be replaced by one nonprofessional?” The ridiculousness of the position was becoming apparent. To consider such a position would jeopardize my health and safety and would be “negligent.”
Almost immediately the case worker stated, “You’re not going anywhere!” I later found out that part of their argument was that I could go home because quadriplegics (Spinal cord injury) are sent home after their injury. I argued that quads don’t recover and therefore don’t need therapy, whereas, I would recover and therefore I needed continued intensive therapy. Because of the rarity of my condition, the hospital doesn’t have a well established protocol for dealing with GBS. Consequently, in an attempt at dumping me into a category they clumped me in with spinal cord injury patients in light of my “quad” status. They were effectively trying to stick a square through a circle.
We are at the crossroads again. The administration wants to discharge me next week and I’m trying to extend my stay until the end of the month for the purpose of receiving continued therapy. As noted above, my progress over the last several weeks and especially this last week has been remarkable. The positive effects of the most recent IVIG serum will only begin to take effect this week going into the next several weeks. Should I be discharged I will not receive the level of therapy I need; consequently, the IVIG serum will have been a waste. Given my rate of progression two additional weeks would provide me with the tools and ability to further control my environment without the need for third party intervention. Surely, from a cost/benefit analysis, the physical enhancement experienced would warrant the short extended stay.
The bottom line is I would greatly and substantially benefit from the short but crucial extension. The hospital should not let the administration of the IVIG become irrelevant. The benefit is too tangible and certain and should not be dismissed, wasted or overlooked.
NOTE
This may be the last Edition coming out of Rancho. When next you hear from me I may be from inside the walls of my home. INCREDIBLE!
As I always say, “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
____________________
LATE EDITION
____________________________________________________
"THE AGGREGATE EXPERIENCE"
08-08-10
ASCENSION
PROLOGUE
(Diversion)
I WAS DYING before the onset of this unforeseen paralyzing condition. No, not in the metaphysical sense (we are all going to die). Simply put, my life style was going to get the best of me. I was drinking too much, eating too much and exercising too little, a prescription for disaster. To make matters worse, I didn’t see it coming, and what I saw I reasoned could be fixed “tomorrow.”
So what happens? I didn’t get a stroke, heart attack or diabetes. I came down with some rare condition totally unrelated to my lifestyle. GUILLIAN BARRE . Cruel irony?
I’ve always lived my life according to a strong work ethic matched by a strong play ethic. Given my profession I frequently entertained clients at various nightspots throughout Los Angeles and Beverly Hills. I did not have a regular eight to five job. As part of my employ I also traveled extensively throughout the U.S. and abroad either with clients or on their behalf where entertaining was always part of the agenda. “It was part of the job.”
As I review my life’s markers the shift in focus away from diligence and into dalliance is apparent, however, as events played out over any given time frame the impact of any one event in isolation is nominal and of very little import. Sure, certain things have raised the eyebrow of concern, however, I have always been able to overcome adversity by sheer force of personality, arrogance and determination; consequently, I was never overly taken by any singular event.
You have to understand connecting life’s dots isn’t something we readily do. Introspection is not practiced out of laziness, fear of what we’ll see or because time has run out.
How many bad relationships have we been in where the struggle is apparent but the fix is elusive and before you know it five, ten or fifteen years have gone by? You stay because the shift away from the beginning is so slight as to be imperceptible and thus tolerable. The passage of life is like watching hair grow, you don’t know it’s long until it’s cut.
It’s only when life’s events are viewed in the aggregate where divergence from life’s mission statement can be assessed.
In my eight month stay here I’ve come to realize I diverted from my life mission statement.
Through determination and strict adherence to structure the diversion has been corrected and a strident and well structured path will continue to be the goal. I have worked too hard over a long period of time and have reaped tremendous health benefits as a direct result of this change to have it wasted and trifled.
As I recover and come out from the other end of this living hell, I am met with a sense of purpose and resolve not felt for a number of years. GBS may have taken something from me, but I take from it much more. I have created a new life.
Chapter one
- Liberation -
Exactly eight months ago to the day I awoke to what would become a hell by anyone’s measure. Although I have tried, the words on the page fall substantially short of adequately describing the level of fear and initial resignation I felt when faced with a tracheotomy and unable to move a muscle. Because of the quickness with which my body degenerated, death was something I had to seriously consider as an unwanted option.
As it turned out, the paralysis stopped at my neck leaving my brain free to think and my mouth free to express generated thought. The ability to think and express would prove to be vital to my recovery.
On June 29, I took my first steps with the help of four therapists and a huge and sturdy walker which can be used as an engine hoist. There was a therapist pulling the walker, one on my right leg, one walking along side holding on to a belt keeping me from falling and one following me with my power chair in case I fell or needed to rest. When I first walked, the therapist literally counted the number of steps I took to measure my progress. The steps were so few they were easy to count. Although I didn’t fall, I needed to rest several times despite the short distance.
Over the past thirty odd days I have walked several times and graduated to a lighter walker. The heavy steel walker was replaced by a walker made of aluminum tubing which I push to move forward, the one you always see with tennis balls attached. At first I was scared to use the walker thinking it would crash under my weight. Well, the walker held up and I walked even farther, too many steps to count.
During the last week, my progress has been truly remarkable. From four therapists assisting I dropped down to three then two, now I walk with just one therapist. Whereas I was walking only about once a week because of the number of assistants needed I now walk every day and walked twice on Thursday, each time clocking in about one hour of walking. I even ventured outside with the walker and walked through the driveway gauging my ability to handle different terrain. Leaving the building was a little precarious because of the slight ramp leading outside the door, but I nevertheless successfully negotiated the decline out and incline into the building upon my return. I also was even able to walk over a soft ply carpet where I thought I would have some difficulty from getting my shoe stuck in the carpet.
Prior to the last couple of weeks I thought my progress would be slower. I was anticipating taking a couple of more months to get where I am today. I am truly amazed at how far I’ve come since my first walk. It’s like a totally different person. My improvement has even impressed the therapists. If you remember, I recently received the IVIG serum. Despite the want of clinical studies documenting the positive effects of the IVIG, my rapid progression appears to coincide with the administration of the serum on two separate occasions. In point of fact, the administering doctor indicated on Friday that I should receive another round of the serum. This would not have been suggested if he did not feel reasonably confident of the serum’s positive effects. What’s important to realize is that despite the cost and expense of administering the IVIG, he feels the cost is certainly outweighed by the benefit. As for me, if it helps, and I don’t know if it is, I’ll take it and suffer through the side effects of fever and a headache.
WEIGHT
Since leaving Unit 903 I’ve been weighed only once coming in at 199.2 lbs. or 90.5 kg. I suspect I’ll come in at about 197 lbs./89.5 kg when I’m weighed Wednesday morning. It’s interesting, although still concerned with my weight loss I am no longer overly consumed with it. I know I will continue to lose weight while maintaining my diet and exercise regimen. I’m sort of on auto pilot, it will happen. My concern has rightly shifted to walking and increasing my independence from third party intervention. I like the phrase “assurance of stride.”
DEPARTURE DATE
Here is where we run into an ongoing debate. Since my arrival at Rancho Los Amigos the administration has been trying to send me home or to a nursing facility. Within 28 days of my arrival the doctors held a meeting with my family to discuss my discharge and transfer the charge of my care to my 21 year old son, Forrest. At this time I was still completely paralyzed with only a modicum of movement in my left arm. I was totally and completely dependent on others for everything related to my survival and mental well being, from eating to wiping lint off my face. My hands and fingers were incapable of any movement and function. The only way to summon the nurse or to control the TV was to blow air through plastic tubes. It’s funny now, but if I missed a channel I had to blow through the entire channel sequence to get to the right position.
After listening to the doctor move headlong into his sales pitch (for a moment he sounded like he was selling a used car) I realized the presumption he was using as his first premise was false and therefore the whole argument was invalid. He presumed my son could take care of me. I quickly pointed out the absurdity of his position. “You’re suggesting that six medical professionals working round the clock seven days a week are going to be replaced by one nonprofessional?” The ridiculousness of the position was becoming apparent. To consider such a position would jeopardize my health and safety and would be “negligent.”
Almost immediately the case worker stated, “You’re not going anywhere!” I later found out that part of their argument was that I could go home because quadriplegics (Spinal cord injury) are sent home after their injury. I argued that quads don’t recover and therefore don’t need therapy, whereas, I would recover and therefore I needed continued intensive therapy. Because of the rarity of my condition, the hospital doesn’t have a well established protocol for dealing with GBS. Consequently, in an attempt at dumping me into a category they clumped me in with spinal cord injury patients in light of my “quad” status. They were effectively trying to stick a square through a circle.
We are at the crossroads again. The administration wants to discharge me next week and I’m trying to extend my stay until the end of the month for the purpose of receiving continued therapy. As noted above, my progress over the last several weeks and especially this last week has been remarkable. The positive effects of the most recent IVIG serum will only begin to take effect this week going into the next several weeks. Should I be discharged I will not receive the level of therapy I need; consequently, the IVIG serum will have been a waste. Given my rate of progression two additional weeks would provide me with the tools and ability to further control my environment without the need for third party intervention. Surely, from a cost/benefit analysis, the physical enhancement experienced would warrant the short extended stay.
The bottom line is I would greatly and substantially benefit from the short but crucial extension. The hospital should not let the administration of the IVIG become irrelevant. The benefit is too tangible and certain and should not be dismissed, wasted or overlooked.
NOTE
This may be the last Edition coming out of Rancho. When next you hear from me I may be from inside the walls of my home. INCREDIBLE!
As I always say, “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
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