Yesterday I received the letter from the Social Security office denying disability benefits. Regardless of medical evidence dating back to 1977 to support my claim, the Social Security office without any further attempt to follow up or interview or discuss with anyone outside their narrow-field experts reagarding my situation, said I can do the kind of work I did before. Even though the State of California had enough evidence to grant me benefits, the national government denied it. No surprise. Legal sources cite that approximately 65% of all first-time applicants are denied benefits. It's a weeding out process, a kind of mind game to challenge the applicant.
I was shocked, initially, by their rejection, then I got pissed off when I re-read the letter and discovered one significant aspect of my disability had been left out. It is something I had documented and had the evidence to support, something that directly relates to the work I had been previously doing. It was conspicously absent from what they claimed were their reasons for denying me benefits. That's what got me pissed off, and made me determined to appeal. It will be interesting to see what kind of battle that entails, but I will share it with you here in the hopes that it will help others seeking similar recognition and aid from Social Security.
Ironically, since my disability is progressive there is no doubt that the further evidence or worsen conditions required by Social Security will be there. It's a shame that the same 65% of people who get denied must be at least 65% worse than they are before the government decides they are worthy of help.
Thursday, February 02, 2006
Tuesday, January 31, 2006
Fat Is Fine!
In my earlier entry "Before & After - Weight Loss" I said I would describe in further detail the impact on my relationships of my weight loss and hip replacement. Well, in light of my recent heavy entries (no pun intended) I decided to lighten (again, no pun intended) the mood a bit and talk about other people's reactions.
The effects my weight loss on my then-girlfriend and future potential relationships baffled me. Since I had been morbidly obese my entire adult life, I believed that women didn't want to date fat guys. Certainly pop culture supported that assumption. But I discovered that just the opposite was true, at least in the case of the girls I had dated.
At the start of my diet, my then-girlfriend went to Korea to teach for a year. We didn't expect the other to be exclusive over that year, but the goal was to be a couple when she returned to L.A. When she returned she was so freaked-out by my weight loss that she told me she couldn't date me anymore.
WHAT THE F*&$?!
I asked her why and she said she felt fat around me.
Again, WHAT THE F*@#?!!!
OK, so she wasn't petite, but considering how fat I had been my entire life was I going to judge her for not being what American pop culture defined as "perfect?" Hell no! The fact was that when I was at my heaviest weight (315 lbs.) she had fallen in love with me and wanted to have sex with me! At worst, this girl was voluptuous, and I mean that in the TRUE sense of the word, OK? She wasn't fat at all in my eyes. But none of that mattered to her. How big a jerk did she think I was? If she knew anything about who I really was and still am don't you think she would have given me credit for not throwing her aside once I was 200 pounds?
Apparently not.
She told me that now that I was at a more "ideal" weight all I would want to date were "beach bunnies." WHAT?! As long as she was around me she would feel insecure. WHAT?! Blown away by her negative reaction I told her, "When have I ever wanted 'beach bunnies'?" But nothing I told her could reassure her. So, that was that. She dumped me. She dumped me because I wasn't fat! That's right! She didn't want me anymore because I wasn't fat! When was the last time heard that?
Believe it or not, it got stranger from there...
When I met women who hadn't known me prior to the weight loss and the conversation of my weight loss or hip replacement came up (and believe me I never brought it up, I was smarter than that), they wigged out. It was too intense for them...and several told me this. Instead of being impressed or engaged by what I had achieved or having bounced back from the surgery they simply couldn't cope with it and felt insecure. That's the word they used...insecure!
What was that about?!
All of this taught me one thing: in a culture where perfection is defined by looks and not substance, two things are likely to happen: either people are going to be obsessed with only engaging with what they are taught is perfect; or they are going to engage in what is less perfect than they are in order to feel more perfect. In other words, I had been able to more successfully date women when I was fat because I made them feel more perfect. Once I was closer to my ideal weight than they had been taught they were, being with me only reminded them of how imperfect they were.
It was all very frustrating. Fortunately, after two years of this ridiculous dating situation, I met Laura, who is more than secure enough in herself not to determine her personal perfection in relation to my own.
The effects my weight loss on my then-girlfriend and future potential relationships baffled me. Since I had been morbidly obese my entire adult life, I believed that women didn't want to date fat guys. Certainly pop culture supported that assumption. But I discovered that just the opposite was true, at least in the case of the girls I had dated.
At the start of my diet, my then-girlfriend went to Korea to teach for a year. We didn't expect the other to be exclusive over that year, but the goal was to be a couple when she returned to L.A. When she returned she was so freaked-out by my weight loss that she told me she couldn't date me anymore.
WHAT THE F*&$?!
I asked her why and she said she felt fat around me.
Again, WHAT THE F*@#?!!!
OK, so she wasn't petite, but considering how fat I had been my entire life was I going to judge her for not being what American pop culture defined as "perfect?" Hell no! The fact was that when I was at my heaviest weight (315 lbs.) she had fallen in love with me and wanted to have sex with me! At worst, this girl was voluptuous, and I mean that in the TRUE sense of the word, OK? She wasn't fat at all in my eyes. But none of that mattered to her. How big a jerk did she think I was? If she knew anything about who I really was and still am don't you think she would have given me credit for not throwing her aside once I was 200 pounds?
Apparently not.
She told me that now that I was at a more "ideal" weight all I would want to date were "beach bunnies." WHAT?! As long as she was around me she would feel insecure. WHAT?! Blown away by her negative reaction I told her, "When have I ever wanted 'beach bunnies'?" But nothing I told her could reassure her. So, that was that. She dumped me. She dumped me because I wasn't fat! That's right! She didn't want me anymore because I wasn't fat! When was the last time heard that?
Believe it or not, it got stranger from there...
When I met women who hadn't known me prior to the weight loss and the conversation of my weight loss or hip replacement came up (and believe me I never brought it up, I was smarter than that), they wigged out. It was too intense for them...and several told me this. Instead of being impressed or engaged by what I had achieved or having bounced back from the surgery they simply couldn't cope with it and felt insecure. That's the word they used...insecure!
What was that about?!
All of this taught me one thing: in a culture where perfection is defined by looks and not substance, two things are likely to happen: either people are going to be obsessed with only engaging with what they are taught is perfect; or they are going to engage in what is less perfect than they are in order to feel more perfect. In other words, I had been able to more successfully date women when I was fat because I made them feel more perfect. Once I was closer to my ideal weight than they had been taught they were, being with me only reminded them of how imperfect they were.
It was all very frustrating. Fortunately, after two years of this ridiculous dating situation, I met Laura, who is more than secure enough in herself not to determine her personal perfection in relation to my own.
Southern Comfort
I was raised in Denton, TX, much to my chagrin. I didn't have much choice, really, as I was not even two when my father took a position as professor of organ at the then North Texas State University (now called University of North Texas). So, the family packed up and we moved from Tucson, Az. (I was born in nearby Mesa) and for the next twenty-eight years or so I had to deal with bigotry, racial inequality and conservative political and religious intolerance. Fortunately, my parents were die-hard liberals, as was the church to which they were members and the fact that Denton, TX had two well known universities huddled amongst its more entrenched conservative population made my life considerably easier.
I also had a handful of really great friends, who, at least when younger, were liberal like myself and believed in modernity instead of the larger communities desire to return the town of Denton to the Antebellum South. As liberal as these friends were I still didn't trust them enough to share with them the full extent of my disabilities. Sure, they all knew about Matt's "hip problem," but it was something from my childhood and was not part of my present...at least that's what I wanted them to believe. As a result of my not wanting my friends to know I was "different" and my family believing my initial "corrective" hip surgery at age 10 had remedied my disabilities, I learned very early on not to ask for anyone's assistance, let alone trust anyone to give me help when I needed it most.
One of the positive and sometimes irritating characteristics of Southern culture is "neighborliness." Folks got into other folks business. If you weren't a good neighbor, didn't know what was happening to the folks in your town, you weren't being a good Southerner. Since I was trying to keep even my closest friends from knowing my secret, I came to resent the idea of neighborliness and asking for help from the community. When you see as much racism and intolerance as you do growing up in the South, you learn quickly that judgment can result in terrible consequences. I wanted nothing more than to get away from Southerners and anyone getting into my business. That was one of my reasons for moving to Los Angeles.
Inevitably once I realized my disabilities were beyond my own ability to control and that I would indeed need to ask for help I found it next to impossible to ask even my own girlfriend to do what had once been the simplest of tasks for me. When she would insist I not do something that was now painful I found myself momentarily angry and resentful, but her love and generosity made it clear that it was not only for my benefit but for hers that she be able to do whatever it was that need to be done. By the way, my girlfriend Laura is a native Texan. Believe me, the irony of my moving 1500 miles away from Texas only to return on a visit and meet the love of my life in Irving, Texas is not lost on me. Laura is a Southern Lady through and through - and I mean that in the best sense of the word! She is as liberal as I am, but she is strong, independent and very supportive. She believes in family beyond blood and loves unconditionally. She has taught me that I can ask for help and not be judged because I can't do things I once could.
Today, the test of whether I could ask for help or not was put to the test. Having taken some pain medication prior to leaving my apartment on a simple walk to drop off the rent check and return a rented video, I carelessly took the wrong set of keys and locked myself out of the apartment. I found it more and more difficult to remember certain things and usually it is the routine things I forget such as where I left my wallet or keys unless I put them in exactly the same place or really concentrate on what I'm doing when I quickly grab up the apartment keys. When I returned and found myself locked out I was so pissed.
Since I was going to have to ask for help from one of my neighbors to contact the manager to get me inside my apartment, I was going to have to test my own prejudice against neighborliness. Fortunately I have some very nice neighbors and two of them, Keith and Cindy, were the first I though of. Also fortunate was that they were home. They were more than happy to help and I was able to contact the manager to get be back inside. While waiting for the manager to arrive I had a great chat with Keith and Cindy and found out that Keith is native of Louisiana. Like Laura, Keith embodies the best of a liberal Southerner. His sense of neighborliness and community made him both warm and welcoming. Cindy, too, being a native of Los Angeles was very kind and made me feel welcome while waiting.
What had started out as a humiliating incident based on my carelessness and lack of attention due to my chronic pain turned into a positive lesson in asking for help. I have no doubt that as my disabilities continue to affect my capabilities and test my patience I will be challenged to ask for help from friends, family and neighbors. I only hope I will continue to accept the challenge and change that old programming which says, "Keep your secret to yourself. Show no one you are weak or incapable." Without a doubt, whether it be from a Southerner or from any other person, I will not let the prejudice I saw as a child or let my own prejudices keep me from asking.
I also had a handful of really great friends, who, at least when younger, were liberal like myself and believed in modernity instead of the larger communities desire to return the town of Denton to the Antebellum South. As liberal as these friends were I still didn't trust them enough to share with them the full extent of my disabilities. Sure, they all knew about Matt's "hip problem," but it was something from my childhood and was not part of my present...at least that's what I wanted them to believe. As a result of my not wanting my friends to know I was "different" and my family believing my initial "corrective" hip surgery at age 10 had remedied my disabilities, I learned very early on not to ask for anyone's assistance, let alone trust anyone to give me help when I needed it most.
One of the positive and sometimes irritating characteristics of Southern culture is "neighborliness." Folks got into other folks business. If you weren't a good neighbor, didn't know what was happening to the folks in your town, you weren't being a good Southerner. Since I was trying to keep even my closest friends from knowing my secret, I came to resent the idea of neighborliness and asking for help from the community. When you see as much racism and intolerance as you do growing up in the South, you learn quickly that judgment can result in terrible consequences. I wanted nothing more than to get away from Southerners and anyone getting into my business. That was one of my reasons for moving to Los Angeles.
Inevitably once I realized my disabilities were beyond my own ability to control and that I would indeed need to ask for help I found it next to impossible to ask even my own girlfriend to do what had once been the simplest of tasks for me. When she would insist I not do something that was now painful I found myself momentarily angry and resentful, but her love and generosity made it clear that it was not only for my benefit but for hers that she be able to do whatever it was that need to be done. By the way, my girlfriend Laura is a native Texan. Believe me, the irony of my moving 1500 miles away from Texas only to return on a visit and meet the love of my life in Irving, Texas is not lost on me. Laura is a Southern Lady through and through - and I mean that in the best sense of the word! She is as liberal as I am, but she is strong, independent and very supportive. She believes in family beyond blood and loves unconditionally. She has taught me that I can ask for help and not be judged because I can't do things I once could.
Today, the test of whether I could ask for help or not was put to the test. Having taken some pain medication prior to leaving my apartment on a simple walk to drop off the rent check and return a rented video, I carelessly took the wrong set of keys and locked myself out of the apartment. I found it more and more difficult to remember certain things and usually it is the routine things I forget such as where I left my wallet or keys unless I put them in exactly the same place or really concentrate on what I'm doing when I quickly grab up the apartment keys. When I returned and found myself locked out I was so pissed.
Since I was going to have to ask for help from one of my neighbors to contact the manager to get me inside my apartment, I was going to have to test my own prejudice against neighborliness. Fortunately I have some very nice neighbors and two of them, Keith and Cindy, were the first I though of. Also fortunate was that they were home. They were more than happy to help and I was able to contact the manager to get be back inside. While waiting for the manager to arrive I had a great chat with Keith and Cindy and found out that Keith is native of Louisiana. Like Laura, Keith embodies the best of a liberal Southerner. His sense of neighborliness and community made him both warm and welcoming. Cindy, too, being a native of Los Angeles was very kind and made me feel welcome while waiting.
What had started out as a humiliating incident based on my carelessness and lack of attention due to my chronic pain turned into a positive lesson in asking for help. I have no doubt that as my disabilities continue to affect my capabilities and test my patience I will be challenged to ask for help from friends, family and neighbors. I only hope I will continue to accept the challenge and change that old programming which says, "Keep your secret to yourself. Show no one you are weak or incapable." Without a doubt, whether it be from a Southerner or from any other person, I will not let the prejudice I saw as a child or let my own prejudices keep me from asking.
Monday, January 30, 2006
Prisoners of Chronic Pain
Something I expected but did not prepare myself for has happened as a result of my acceptance of my disabilities, going public through this blog and my pursuit of disability status: depression. I'm not talking the kind of minor or even more severe situational depressions, which I have dealt with on and off throughout my life, but the manic depression which has hovered on the edge of my psyche since childhood.
Anxiety...Paranoia...Suicidal thoughts...
As the physical pain continues to increase, the insomnia continues, and receiving state disability insurance while I wait for Social Security to make its determination, I have battled with irrational fears, paranoia and a sense of worthlessness that accompany the collapse of my psychological defenses. Psychological defenses which have been entrenched since childhood. Psychological defenses I subconsciously created in order to function as an able-bodied person despite my being disabled. These defense are now breaking down and the whole of who and how I saw myself are now deconstructing in the wake of my conscious acceptance that nothing I do can ever stop the inevitable degeneration of my physical structure.
Pain is all I feel...and all I can feel is pain! It fucking sucks! My whole world has turned upside down...
I was naive to think I could have ever prepared myself for the psychic crackdown I am now feeling. I believe that any person who was once able-bodied now made disabled feels this same way. All the dreams and ambitions I sought to achieve less than an year ago now seem impossible as my body continues to destroy itself. And the pain taunts me and shouts at me, "You are fucked, son!"
As I sit in the dark at 3:00 in the morning, I realize that the best I can hope for is some kind of merciful release from the unrelenting force moving through my body, tearing me apart slowly, savoring in my despair. All the while this is happening my mind is also being torn apart. Once I was in control. Once I was able to be a person like other people. I was able to contribute to society in an acceptable fashion. I was able to do something, anything that made me appear "normal"...but "normal" is an illusion. It twists my mind into a pretzel.
Although I opened this blog with a pledge to express my full experience as a disabled person, it took me weeks to decide if I was going to share the fragility of my mind with you the reader. Afterall, as harsh is the stigma that is cast on those with physical disabilities, when the mind becomes part of the whole disabled experience all sorts of new stigmas, judgments and prejudices arise. The lack of understanding connected with chronic pain results in those who suffer with it being erroneously diagnosed with mental conditions that are side effects of chronic pain. Chronic pain does weird shit to the human mind.
Regardless of my own reservations I truly believe that those who suffer with chronic pain need to know that whatever crazy thoughts might arise in the wake of the changes brought on by their condition(s) are just a symptom of the underlying disability and should not determine the course of their actions or their lives. Be aware that as the pain takes hold it can like any infection spread rapidly and will necessitate the need for the sufferer to change their life in accordance with the need for pain management. Having said that, don't let it conduct the choice of how you will live your live or determine what actions you will take. You must consciously be aware that our society does not realize or even recognize the severity of chronic pain and they will not accept it as an excuse for what society deems as inappropriate action...regardless of what you must do to find pain relief.
We do not live a society that lifts up the disabled. In fact, the disabled are seen as unnecessary and useless by those in control of our government. As a result the terrible shadow of humiliation and oftentimes guilt arises for which no disabled person is responsible. Our media shows us only the stories of those disabled persons who have, in society's terms, risen above their circumstances and become "successful." Meanwhile, hundreds of thousands, perhaps millions, of other disabled persons who cannot make the adjustment as "successfully" suffer in the dark. No aid is readily given, and the society which they are told will help them and take care of them abandons them and persecutes them. Where are the stories of those who are not so "successful?"
Finally, one such story has been told by the CBS Sunday night news magazine "60 Minutes." His name is Richard Paey and he sits in a Florida prison, sentenced for 25 years, convicted for drug trafficking of a controlled substance. The district attorney claims the case is not about chronic pain sufferers but is about one man who abused the medical system by using illegal prescriptions in order to obtain pain medication. Paey was the victim of a car accident, followed by a botched back surgery and later diagnosed with multiple sclerosis, all of which have left him wheelchair bound and in horrific pain. His need was so great and his intake of pain medication so high he fell on the radar of the federal government who busted him for possession and selling controlled substances. Although no evidence could be found to confirm his selling the drugs, the implications alone were strong enough to get him convicted. He know sits in a penitentiary receiving morphine at doses much higher than any drugs he was accused of trafficking. Initially his doctor of seven years supported Paey by telling authorities he provided Paey with undated prescriptions, mailed and faxed from New Jersey to Florida where Paey, his wife and two children lived. However, when the authorities presented this doctor with evidence suggesting Paey had actually forged more prescriptions than the doctor claimed to have given Paey, the doctor turned state's evidence against Paey and ensured his patient was locked up.
Although I hope any sufferer from chronic pain who reads this blog will do whatever they can to see this "60 Minutes" report entitled "Prisoner of Pain," I have to warn you, it will scare the hell out of you. In the wake of my fear and paranoia that I won't find the relief I need as my conditions continue to worsen, seeing what happened to this poor man, regardless of whether he did it or not, what hope has the chronic pain sufferer got? The medical profession is so terrified of the legal ramifications surrounding prescribing pain medication and because so many unconscionable people abuse pain medication when they don't need it the true sufferers of chronic pain are not seen as victims but potential criminals. Because doctors won't more closely examine and study the phenomenon of chronic pain and how it uniquely affects each sufferer they throw too little or too much medication at the symptom without also helping the sufferer adjust mentally to the lifelong battle...a battle they can only hope will end in a stalemate.
In the wake of such a horrible possibility of being turned into a criminal by society because of something over which a person has absolutely no control, the question must be asked, "Is death the only alternative?" Christ, I hope not. But I see all the adds on TV of individuals and companies who purport to have the cure-all for pain, as if pain is something each person experiences the same way or at the same severity. In my case, I have been in pain since I was seven years old. My threshold for pain is pretty damn high. When I've talked to other people who use pain medication, the doses they take and their reaction to them are entirely different from mine. I have never had a bad reaction to Vicodin, but simple Ibuprofin messes me up good. When I was in the hospital for the hip replacement, the only relief I could find immediately after the surgery was morphine...pretty high doses, too. Other people have told me Vicodin totally messes them up and the thought of a morphine drip terrifies them. So, who can say what the cure-all is for pain? No one! It is as specific for each sufferer as the underlying condition.
Chronic pain sufferers are caught between the rock of a society that seeks to exploit the ignorance of chronic pain through the selling of cure-alls and overmedication of drugs to those who don't really need it and the hard-place of government who persecutes the genuine sufferers of pain through drug laws that create fear in the medical profession that undermedicate those who need genuine pain relief. Hey, I'm not blaming doctors for being afraid and I'm not blaming chronic pain sufferers for being paranoid of asking for the help they need. What I am saying is that the government should spend as much money on researching and giving assistance to those who require what they deem as "too much" controlled substances to simply exist as they do on law enforcement aimed at cracking down on legitimate sufferers.
While illegal drugs like crystal-meth is created and distributed in the heartland of America, cops go after those who can't literally run from them because they are trapped in bodies that won't move as quickly as some doped-up teenager. Christ, what an incredibly sad state of affairs. Until someone lives with chronic pain and the terrible affect it has on your psyche and character, no one can begin to understand the extent to which a sufferer will go to achieve pain relief.
My own fear, paranoia and suicidal thoughts have made me wonder how far I could or might go to find relief as the pain inevitably increases and my body's tolerance to the pain medication I take for relief increases. Fortunately I know enough to get whatever psychological therapy is necessary and I am surrounded by people who love me enough to check on my actions to keep me from going too far. Although I do not mean to condemn Richard Paey's wife Linda who I believe from the interview truly loves and supports her husband and believes him innocent of the conviction, I wish that someone could have checked on and helped Richard Paey from going too far. On the other hand, chronic pain is a force that can turn anyone from who they are into something unrecognizable to even those closest to the sufferer.
Anxiety...Paranoia...Suicidal thoughts...
As the physical pain continues to increase, the insomnia continues, and receiving state disability insurance while I wait for Social Security to make its determination, I have battled with irrational fears, paranoia and a sense of worthlessness that accompany the collapse of my psychological defenses. Psychological defenses which have been entrenched since childhood. Psychological defenses I subconsciously created in order to function as an able-bodied person despite my being disabled. These defense are now breaking down and the whole of who and how I saw myself are now deconstructing in the wake of my conscious acceptance that nothing I do can ever stop the inevitable degeneration of my physical structure.
Pain is all I feel...and all I can feel is pain! It fucking sucks! My whole world has turned upside down...
I was naive to think I could have ever prepared myself for the psychic crackdown I am now feeling. I believe that any person who was once able-bodied now made disabled feels this same way. All the dreams and ambitions I sought to achieve less than an year ago now seem impossible as my body continues to destroy itself. And the pain taunts me and shouts at me, "You are fucked, son!"
As I sit in the dark at 3:00 in the morning, I realize that the best I can hope for is some kind of merciful release from the unrelenting force moving through my body, tearing me apart slowly, savoring in my despair. All the while this is happening my mind is also being torn apart. Once I was in control. Once I was able to be a person like other people. I was able to contribute to society in an acceptable fashion. I was able to do something, anything that made me appear "normal"...but "normal" is an illusion. It twists my mind into a pretzel.
Although I opened this blog with a pledge to express my full experience as a disabled person, it took me weeks to decide if I was going to share the fragility of my mind with you the reader. Afterall, as harsh is the stigma that is cast on those with physical disabilities, when the mind becomes part of the whole disabled experience all sorts of new stigmas, judgments and prejudices arise. The lack of understanding connected with chronic pain results in those who suffer with it being erroneously diagnosed with mental conditions that are side effects of chronic pain. Chronic pain does weird shit to the human mind.
Regardless of my own reservations I truly believe that those who suffer with chronic pain need to know that whatever crazy thoughts might arise in the wake of the changes brought on by their condition(s) are just a symptom of the underlying disability and should not determine the course of their actions or their lives. Be aware that as the pain takes hold it can like any infection spread rapidly and will necessitate the need for the sufferer to change their life in accordance with the need for pain management. Having said that, don't let it conduct the choice of how you will live your live or determine what actions you will take. You must consciously be aware that our society does not realize or even recognize the severity of chronic pain and they will not accept it as an excuse for what society deems as inappropriate action...regardless of what you must do to find pain relief.
We do not live a society that lifts up the disabled. In fact, the disabled are seen as unnecessary and useless by those in control of our government. As a result the terrible shadow of humiliation and oftentimes guilt arises for which no disabled person is responsible. Our media shows us only the stories of those disabled persons who have, in society's terms, risen above their circumstances and become "successful." Meanwhile, hundreds of thousands, perhaps millions, of other disabled persons who cannot make the adjustment as "successfully" suffer in the dark. No aid is readily given, and the society which they are told will help them and take care of them abandons them and persecutes them. Where are the stories of those who are not so "successful?"
Finally, one such story has been told by the CBS Sunday night news magazine "60 Minutes." His name is Richard Paey and he sits in a Florida prison, sentenced for 25 years, convicted for drug trafficking of a controlled substance. The district attorney claims the case is not about chronic pain sufferers but is about one man who abused the medical system by using illegal prescriptions in order to obtain pain medication. Paey was the victim of a car accident, followed by a botched back surgery and later diagnosed with multiple sclerosis, all of which have left him wheelchair bound and in horrific pain. His need was so great and his intake of pain medication so high he fell on the radar of the federal government who busted him for possession and selling controlled substances. Although no evidence could be found to confirm his selling the drugs, the implications alone were strong enough to get him convicted. He know sits in a penitentiary receiving morphine at doses much higher than any drugs he was accused of trafficking. Initially his doctor of seven years supported Paey by telling authorities he provided Paey with undated prescriptions, mailed and faxed from New Jersey to Florida where Paey, his wife and two children lived. However, when the authorities presented this doctor with evidence suggesting Paey had actually forged more prescriptions than the doctor claimed to have given Paey, the doctor turned state's evidence against Paey and ensured his patient was locked up.
Although I hope any sufferer from chronic pain who reads this blog will do whatever they can to see this "60 Minutes" report entitled "Prisoner of Pain," I have to warn you, it will scare the hell out of you. In the wake of my fear and paranoia that I won't find the relief I need as my conditions continue to worsen, seeing what happened to this poor man, regardless of whether he did it or not, what hope has the chronic pain sufferer got? The medical profession is so terrified of the legal ramifications surrounding prescribing pain medication and because so many unconscionable people abuse pain medication when they don't need it the true sufferers of chronic pain are not seen as victims but potential criminals. Because doctors won't more closely examine and study the phenomenon of chronic pain and how it uniquely affects each sufferer they throw too little or too much medication at the symptom without also helping the sufferer adjust mentally to the lifelong battle...a battle they can only hope will end in a stalemate.
In the wake of such a horrible possibility of being turned into a criminal by society because of something over which a person has absolutely no control, the question must be asked, "Is death the only alternative?" Christ, I hope not. But I see all the adds on TV of individuals and companies who purport to have the cure-all for pain, as if pain is something each person experiences the same way or at the same severity. In my case, I have been in pain since I was seven years old. My threshold for pain is pretty damn high. When I've talked to other people who use pain medication, the doses they take and their reaction to them are entirely different from mine. I have never had a bad reaction to Vicodin, but simple Ibuprofin messes me up good. When I was in the hospital for the hip replacement, the only relief I could find immediately after the surgery was morphine...pretty high doses, too. Other people have told me Vicodin totally messes them up and the thought of a morphine drip terrifies them. So, who can say what the cure-all is for pain? No one! It is as specific for each sufferer as the underlying condition.
Chronic pain sufferers are caught between the rock of a society that seeks to exploit the ignorance of chronic pain through the selling of cure-alls and overmedication of drugs to those who don't really need it and the hard-place of government who persecutes the genuine sufferers of pain through drug laws that create fear in the medical profession that undermedicate those who need genuine pain relief. Hey, I'm not blaming doctors for being afraid and I'm not blaming chronic pain sufferers for being paranoid of asking for the help they need. What I am saying is that the government should spend as much money on researching and giving assistance to those who require what they deem as "too much" controlled substances to simply exist as they do on law enforcement aimed at cracking down on legitimate sufferers.
While illegal drugs like crystal-meth is created and distributed in the heartland of America, cops go after those who can't literally run from them because they are trapped in bodies that won't move as quickly as some doped-up teenager. Christ, what an incredibly sad state of affairs. Until someone lives with chronic pain and the terrible affect it has on your psyche and character, no one can begin to understand the extent to which a sufferer will go to achieve pain relief.
My own fear, paranoia and suicidal thoughts have made me wonder how far I could or might go to find relief as the pain inevitably increases and my body's tolerance to the pain medication I take for relief increases. Fortunately I know enough to get whatever psychological therapy is necessary and I am surrounded by people who love me enough to check on my actions to keep me from going too far. Although I do not mean to condemn Richard Paey's wife Linda who I believe from the interview truly loves and supports her husband and believes him innocent of the conviction, I wish that someone could have checked on and helped Richard Paey from going too far. On the other hand, chronic pain is a force that can turn anyone from who they are into something unrecognizable to even those closest to the sufferer.
De-constructive Surgery
There is a platitude that goes "if it ain't broke, don't fix it." Well, what happens when it doesn't work anymore? I mean, the thing's not broke, it's just outdated, or it simply doesn't do the job anymore? If it's a computer you upgrade the system, right? You download a better program or you replace the operating system. In other words, you destroy or throw out the outdated "something" and replace it with whatever is more current, faster, more effective. Human psychology works the same way...or does it? If we need to re-educate or improve our skills we take courses, we get further our education. The brain intakes new and improved information to make us more current; we upgrade ourselves. But what happens when our bodies begin to breakdown? Something inside us isn't working the way it used to? Can we upgrade our bodies? Can we download a new program to erase the older function and improve the functionalism of the overall system?
After my hip replacement in 2001, the consensus was that I was getting a new and improved hip. In fact, what was at that time the weakest part of my overall body system was now the strongest. Hell, I had switched bone for titanium steel! But that wasn't my only problem. In fact, my spine had already begun degenerating...and there is no such thing as a titanium steel spine! There is no replacing human vertebrae. Shit...I had gone through all the trouble to upgrade my hip joint to have something irreplaceable fall apart! Moreover, the neuropathic pain which may or may not have existed prior to the hip replacement might was likely aggravated or was even created by the upgrade of my hip! What a fucking gip! Here I had gone to all the trouble of losing 100+ lbs. enduring six months of learning to walk again and regain strength in the affected leg only to end up where I am now: in worse fucking pain that anything I had ever experienced before!
Clearly the human body does not work like a machine...so there's go that euphemism. The fact is our bodies are an interconnected system wherein one part relies essentially on another to fully operate. Our DNA will do what they do no matter what physical part we replace. Additionally, our attempts to replace any given part might actually result in further destruction of another part or the overall physical system. I'm not going to say that what I'm experiencing now, the severe spinal problems and neuropathic pains, are a result of four major surgeries to the lower half of my body. In many cases, surgery actually corrects the problem and a person's quality of life does improve. However, in my case, I think it's the opposite. Don't' get me wrong, though, I probably would have ended up shit creek without a paddle a damn site earlier if I hadn't gotten the hip replacement. What I have come to realize is that if one part of you is falling part, you had damn better look at the other parts of your body, too, to make sure it isn't a larger problem.
After the MRI was taken on my spine in 2005, the orthopedic surgeon who had replaced my hip in 2001 was confused that this problem hadn't been spotted by him back when he diagnosed the osteonecrosis in 2000. In fact, he went into his own records to see if he could find any evidence that he and his people had looked at my spine to see if there was any problem with it prior to the hip replacement. He couldn't find any...because he hadn't done any MRI at my spine. So, the question arises, what might have happened if the orthopedic surgeon had MRI'd my spine back in 2000 along with my hip? Might that have changed my surgery? The fact that I had forgotten or mentally blocked out the diagnosis of the 1994 X-ray on my lumbar spine didn't help the fact that there was no reason for the orthopedic surgeon to double-check my spine. Regardless, I can't help but wonder if knowing my spine was messed up in 2000 might not have altered the results of my decision to have the operation.
There's a form you have sign before you have an operation, regardless of the severity. By signing it you absolve the surgeon, the anesthetist, and the hospital of any complications which might arise as a result of the surgery. In other words, if you kick the bucket or shit happens while your under the knife you can't sue anyone for it. Desperate and terrified by whatever the horrific thing that is happening to your body, you will sign any damn thing stuck in front of you! I'm not saying they shouldn't do it. Hell, the surgeons, doctors and institutions have to do it to protect themselves. The fact is that you are gased to the point of unconsciousness and your body is ripped apart and stuff sawed out and other, non-human stuff is put inside your body. What about this doesn't sound like it's going to cause complications?
The bottom line is that reconstructive surgery is an attempt by humans to not only reconstruct what nature (or God if you prefer) has spent millions of years to perfect through evolution (or creation if you prefer) but deconstruct in matter of 90 minutes and send back out into the world in the vain hope that the system that has been surgically mauled and repaired will function better than it did before. When you look at it that way it doesn't seem likely that any surgery will ever work. Hasn't anyone in the medical profession ever read Mary Shelley's "Frankenstein?" Look what happened to that poor bastard (the Creature I mean)! Man playing God collides with Man in desperation to end his suffering; the result: chance.
On the other hand, what makes humans uniquely human is the naive belief that humanity can through its own ignorance of how nature magically created who and what we are can somehow find a way to stop the inevitable, irresistible and irreconcilable force of destruction from doing its uncompassionate job of decay and death. Armed with the technology of medical science and incomplete knowledge of the "what" and "why" of human existence, we attempt to rectify what nature has deemed "right" for any given individual suffering from what humanity has deemed not normal. I guess from this point of view, we can keep hoping but should never expect that surgery will somehow correct what nature has decided is the way it should be.
After my hip replacement in 2001, the consensus was that I was getting a new and improved hip. In fact, what was at that time the weakest part of my overall body system was now the strongest. Hell, I had switched bone for titanium steel! But that wasn't my only problem. In fact, my spine had already begun degenerating...and there is no such thing as a titanium steel spine! There is no replacing human vertebrae. Shit...I had gone through all the trouble to upgrade my hip joint to have something irreplaceable fall apart! Moreover, the neuropathic pain which may or may not have existed prior to the hip replacement might was likely aggravated or was even created by the upgrade of my hip! What a fucking gip! Here I had gone to all the trouble of losing 100+ lbs. enduring six months of learning to walk again and regain strength in the affected leg only to end up where I am now: in worse fucking pain that anything I had ever experienced before!
Clearly the human body does not work like a machine...so there's go that euphemism. The fact is our bodies are an interconnected system wherein one part relies essentially on another to fully operate. Our DNA will do what they do no matter what physical part we replace. Additionally, our attempts to replace any given part might actually result in further destruction of another part or the overall physical system. I'm not going to say that what I'm experiencing now, the severe spinal problems and neuropathic pains, are a result of four major surgeries to the lower half of my body. In many cases, surgery actually corrects the problem and a person's quality of life does improve. However, in my case, I think it's the opposite. Don't' get me wrong, though, I probably would have ended up shit creek without a paddle a damn site earlier if I hadn't gotten the hip replacement. What I have come to realize is that if one part of you is falling part, you had damn better look at the other parts of your body, too, to make sure it isn't a larger problem.
After the MRI was taken on my spine in 2005, the orthopedic surgeon who had replaced my hip in 2001 was confused that this problem hadn't been spotted by him back when he diagnosed the osteonecrosis in 2000. In fact, he went into his own records to see if he could find any evidence that he and his people had looked at my spine to see if there was any problem with it prior to the hip replacement. He couldn't find any...because he hadn't done any MRI at my spine. So, the question arises, what might have happened if the orthopedic surgeon had MRI'd my spine back in 2000 along with my hip? Might that have changed my surgery? The fact that I had forgotten or mentally blocked out the diagnosis of the 1994 X-ray on my lumbar spine didn't help the fact that there was no reason for the orthopedic surgeon to double-check my spine. Regardless, I can't help but wonder if knowing my spine was messed up in 2000 might not have altered the results of my decision to have the operation.
There's a form you have sign before you have an operation, regardless of the severity. By signing it you absolve the surgeon, the anesthetist, and the hospital of any complications which might arise as a result of the surgery. In other words, if you kick the bucket or shit happens while your under the knife you can't sue anyone for it. Desperate and terrified by whatever the horrific thing that is happening to your body, you will sign any damn thing stuck in front of you! I'm not saying they shouldn't do it. Hell, the surgeons, doctors and institutions have to do it to protect themselves. The fact is that you are gased to the point of unconsciousness and your body is ripped apart and stuff sawed out and other, non-human stuff is put inside your body. What about this doesn't sound like it's going to cause complications?
The bottom line is that reconstructive surgery is an attempt by humans to not only reconstruct what nature (or God if you prefer) has spent millions of years to perfect through evolution (or creation if you prefer) but deconstruct in matter of 90 minutes and send back out into the world in the vain hope that the system that has been surgically mauled and repaired will function better than it did before. When you look at it that way it doesn't seem likely that any surgery will ever work. Hasn't anyone in the medical profession ever read Mary Shelley's "Frankenstein?" Look what happened to that poor bastard (the Creature I mean)! Man playing God collides with Man in desperation to end his suffering; the result: chance.
On the other hand, what makes humans uniquely human is the naive belief that humanity can through its own ignorance of how nature magically created who and what we are can somehow find a way to stop the inevitable, irresistible and irreconcilable force of destruction from doing its uncompassionate job of decay and death. Armed with the technology of medical science and incomplete knowledge of the "what" and "why" of human existence, we attempt to rectify what nature has deemed "right" for any given individual suffering from what humanity has deemed not normal. I guess from this point of view, we can keep hoping but should never expect that surgery will somehow correct what nature has decided is the way it should be.
Friday, December 23, 2005
Christmas Caroling
As this Christmas season draws ever so close (two days away, in fact) I can't help but wonder about the religious message of the season: a child is born, presumably the savior of the entire human race, who will, at the age of 33, be viciously nailed to a construct of wood and left to painfully suffer and die. During his short ministry, whether you believe in it or not, this child-become-a-man would spend his time almost exclusively with the rejects, outcasts and disabled of his society. He did not dwell with the rich or the established members of the community. Instead, he sought out the infirmed and the down-trodden. Were he alive today this child would be abhored by those right wing, neo-con fanatics who claim to be his followers. He would forgive but stand-against the politicians who are stripping the poor and the disabled of their protections and rights as members of society to be cared for and assisted.
So what do we make of the message of a child born in a manger?
If this child was born so "perfect" could he have felt the pain and suffering as the nails were hammered into his wrists? Yes, it was his wrists not the center of this hands. This child knew that humanity is about being born with suffering, not creating unnecessary suffering. So, this season about a reflection on being born into suffering and pain, not about commericalism or some fat dude in an ugly red outfit. It isn't about trees being trimmed or families getting together to eat too much damn food and fight about dysfunctional issues that only cause wider rifts between families. Hell, I don't even know when the whole getting together for meals for holidays began! It's not like Joseph, Mary or Jesus ever sat around a table and dug into turkey and cranberry sauce! In fact, Jesus rejected all that crap and went begging.
The hypocrisy of the season which celebrates the birth of a man who spent his life tending to the poor and the disabled affects me deeply. The Christian Right which claims to know best who and what Christ was and what he wanted would preport that Christ was a God that wanted the rich to be richer and the poor, the oppressed and the disabled to fend for themselves. A man who abandoned his career and security to follow some foolish notion that he was a son of God in favor of helping those who suffered from physical, emotional and political oppression is in this present day and time the God of those who seek to slaughter the meek who don't believe in him as the Word of God. Don't fucking believe it! Jesus of Nazareth was not a capatalist who believed in getting what you want for yourself and fuck everyone else. He was a socialist who believed that the each of us who has more has the responsibility to help those who have less.
As someone who was raised Christian, nothing makes me angrier than thinking that those who are now in power are using the name of a man who ministered to the poor, the suffering and the disabled to justify they evil manipulation of monies and resources to not help those who are suffering, poor and disabled.
Sure, it's not much of a entry to celebrate the season of Christmas, but the fact is that a message of a man who sought only to help those who could not help themselves has been corrupted to the point where those who would like nothing more than to destroy the welfare and social security systems which help those who are disabled and suffering have actually convinced us that Jesus of Nazareth does not love them. It's disgusting and inhuman. And perhaps what's worse is that the citizens of the U.S. have voted into office men who believe that anyone who is not rich, able-bodied or can in some way be used to further their evil means should simply die off or be erased.
Merry Christmas, President Bush, Vice-President Cheney, Secretary Rumsfeld and the rest of you sorry bastards. Enjoy your expliotation of the poor and the suffering...your day is coming...
Sorry, if this one got too political...but I can't not say it, you know?
So what do we make of the message of a child born in a manger?
If this child was born so "perfect" could he have felt the pain and suffering as the nails were hammered into his wrists? Yes, it was his wrists not the center of this hands. This child knew that humanity is about being born with suffering, not creating unnecessary suffering. So, this season about a reflection on being born into suffering and pain, not about commericalism or some fat dude in an ugly red outfit. It isn't about trees being trimmed or families getting together to eat too much damn food and fight about dysfunctional issues that only cause wider rifts between families. Hell, I don't even know when the whole getting together for meals for holidays began! It's not like Joseph, Mary or Jesus ever sat around a table and dug into turkey and cranberry sauce! In fact, Jesus rejected all that crap and went begging.
The hypocrisy of the season which celebrates the birth of a man who spent his life tending to the poor and the disabled affects me deeply. The Christian Right which claims to know best who and what Christ was and what he wanted would preport that Christ was a God that wanted the rich to be richer and the poor, the oppressed and the disabled to fend for themselves. A man who abandoned his career and security to follow some foolish notion that he was a son of God in favor of helping those who suffered from physical, emotional and political oppression is in this present day and time the God of those who seek to slaughter the meek who don't believe in him as the Word of God. Don't fucking believe it! Jesus of Nazareth was not a capatalist who believed in getting what you want for yourself and fuck everyone else. He was a socialist who believed that the each of us who has more has the responsibility to help those who have less.
As someone who was raised Christian, nothing makes me angrier than thinking that those who are now in power are using the name of a man who ministered to the poor, the suffering and the disabled to justify they evil manipulation of monies and resources to not help those who are suffering, poor and disabled.
Sure, it's not much of a entry to celebrate the season of Christmas, but the fact is that a message of a man who sought only to help those who could not help themselves has been corrupted to the point where those who would like nothing more than to destroy the welfare and social security systems which help those who are disabled and suffering have actually convinced us that Jesus of Nazareth does not love them. It's disgusting and inhuman. And perhaps what's worse is that the citizens of the U.S. have voted into office men who believe that anyone who is not rich, able-bodied or can in some way be used to further their evil means should simply die off or be erased.
Merry Christmas, President Bush, Vice-President Cheney, Secretary Rumsfeld and the rest of you sorry bastards. Enjoy your expliotation of the poor and the suffering...your day is coming...
Sorry, if this one got too political...but I can't not say it, you know?
Saturday, December 17, 2005
The Herd Thinning Plan
Last Sunday I sat down at the computer and launched into the online Social Security "Adult Disability and Work History" application. If none of you have ever filed for Social Security disability benefits you are fortunate indeed. It's a laborious, intimidating, all-together overwhelming series of questions arranged in four sections, after which even the most able-bodied person is completely wiped out. It took me a total of 8 1/2 hours over two days to complete the application, and that was with every piece of necessary information organized in front of me. I have become OCD about my records, whatever they are, and have hardcopies of everything just in case such a circumstance arose. It appears to be working to my advantage as the Social Security agent who will be my liaison to the Social Security Office appeared impressed with the extent of my medical records, going back to my original hip surgery in 1977. But I couldn't help thinking that anyone who wasn't as organized would be mowed over by the amoutn of information asked for and how long it takes to fill out.
But it doesn't end there...
I'm going to have to file for disability benefits from the State of California. If I can get California to legally recognize me as disabled it will help my case with the U.S. government. I'll let you know what that application is like once it's completed.
It isn't easy for me, or for anyone else, to go through this process of disability benefits. We live in a society that looks down on anyone who requires "assistance," and the current powers-that-be would love nothing more than to eliminate all aid to the disabled in favor of lining the pockets of their corporate supporters and the richest 1% who support their insane political agenda. As a result, the disabled are made to feel like leaches and less-than-important members of society. It's completely humiliating. I busted my ass (literally) over the years, working beyond my limitations and suffering as a result because I didn't want to ask for help or be put in the position I now am of being "examined" by government officials who'd rather I crawl under a rock and die.
By the very nature of being disabled, I want to overcome the challenges fate has thrown against me. It really pisses me off to know that over the next 3 to 6 months an unknown number of faceless bureaucrats will be scrutinizing, double-checking and working endlessly to find any hole they can in my life experience to prove that I don't deserve assistance. It's the ultimate exercise in political hypocrisy. An agency which exists to assist the disabled work as hard as they can to find ways of not assisting the disabled. It's like an insurance company that takes your money so that you can be protected in case of "unforeseen" circumstances, and then when something actually happens to you they work their asses off to find ways of not giving you that money and assistance you've paid for. It's the biggest protection racket ever invented.
I know I sound cynical, but I also know that the Social Security and welfare system begun by President Franklin Delano Roosevelt (himself disabled) has been a thorn in the side of the conservative movement since it's inception some 60 years ago. The very instruments which helped the American people rise out of the ashes of the Great Depression have been labeled as evil and the conservatives and now the neo-cons are doing everything in their power to dismantle it. If it is the wish of the conservatives and neo-cons to eliminate the "weaker" members of the population they should bring legislation to legalize euthanasia. Hell, they are the ones who support the death penalty, so why not? But then how would that help their "pro-life" agenda?
Let's make sure babies, no matter what the circumstance, are born into the world...uh...unless they are born disabled, economically disadvantaged or members of an ethnic group not liked by old white men...then we can be not so pro life.
Is that too harsh?
How about this idea: let's round up all the disabled and use them like we use the economically disadvantaged and ethnic groups not liked by old white men...force them to join the military and send them overseas to fight illegal wars. Yeah, that's the trick! They'd make great soldiers, right? Think about it! What decent person could see a whole army of disabled people charging or wheeling or whatever way they can coming at them and still shoot them? Hey, we could make our own suicide bomber squads! Let's face it, it's better to use the already existing disabled than take healthy young people and make more disabled people...and you'll save money, too. With all the VA hospitals shutting down...sounds good to me! You can literally kill two birds with one bomb under this plan. And I'll call it The Herd Thinning Plan.
I think I'll write up a nice little letter to Mr. Rumsfeld and suggest it.
But it doesn't end there...
I'm going to have to file for disability benefits from the State of California. If I can get California to legally recognize me as disabled it will help my case with the U.S. government. I'll let you know what that application is like once it's completed.
It isn't easy for me, or for anyone else, to go through this process of disability benefits. We live in a society that looks down on anyone who requires "assistance," and the current powers-that-be would love nothing more than to eliminate all aid to the disabled in favor of lining the pockets of their corporate supporters and the richest 1% who support their insane political agenda. As a result, the disabled are made to feel like leaches and less-than-important members of society. It's completely humiliating. I busted my ass (literally) over the years, working beyond my limitations and suffering as a result because I didn't want to ask for help or be put in the position I now am of being "examined" by government officials who'd rather I crawl under a rock and die.
By the very nature of being disabled, I want to overcome the challenges fate has thrown against me. It really pisses me off to know that over the next 3 to 6 months an unknown number of faceless bureaucrats will be scrutinizing, double-checking and working endlessly to find any hole they can in my life experience to prove that I don't deserve assistance. It's the ultimate exercise in political hypocrisy. An agency which exists to assist the disabled work as hard as they can to find ways of not assisting the disabled. It's like an insurance company that takes your money so that you can be protected in case of "unforeseen" circumstances, and then when something actually happens to you they work their asses off to find ways of not giving you that money and assistance you've paid for. It's the biggest protection racket ever invented.
I know I sound cynical, but I also know that the Social Security and welfare system begun by President Franklin Delano Roosevelt (himself disabled) has been a thorn in the side of the conservative movement since it's inception some 60 years ago. The very instruments which helped the American people rise out of the ashes of the Great Depression have been labeled as evil and the conservatives and now the neo-cons are doing everything in their power to dismantle it. If it is the wish of the conservatives and neo-cons to eliminate the "weaker" members of the population they should bring legislation to legalize euthanasia. Hell, they are the ones who support the death penalty, so why not? But then how would that help their "pro-life" agenda?
Let's make sure babies, no matter what the circumstance, are born into the world...uh...unless they are born disabled, economically disadvantaged or members of an ethnic group not liked by old white men...then we can be not so pro life.
Is that too harsh?
How about this idea: let's round up all the disabled and use them like we use the economically disadvantaged and ethnic groups not liked by old white men...force them to join the military and send them overseas to fight illegal wars. Yeah, that's the trick! They'd make great soldiers, right? Think about it! What decent person could see a whole army of disabled people charging or wheeling or whatever way they can coming at them and still shoot them? Hey, we could make our own suicide bomber squads! Let's face it, it's better to use the already existing disabled than take healthy young people and make more disabled people...and you'll save money, too. With all the VA hospitals shutting down...sounds good to me! You can literally kill two birds with one bomb under this plan. And I'll call it The Herd Thinning Plan.
I think I'll write up a nice little letter to Mr. Rumsfeld and suggest it.
Friday, December 09, 2005
Consolation Prize # 3 - That Cool Blue Placard
Growing up with a disability, but not really recognizing it as such, I oftentimes looked at "those special parking places" and thought to myself, "Damn, how cool would it be if..." Once I could drive I thought even harder about how cool it would be to be able to nab one of those spots so that I wouldn't have to cross some mammoth-ass parking lot.
After my hip replacement, I was given, at long last, one of those cool blue parking placards. It was all the rage with my friends, who suddenly were asking me to hitch a ride more than they had before. In fact, the damn thing got me laid a few times! No kidding...the cool blue placard is a chick magnet.
Of course, to look at me, you wouldn't think I deserve one. I'm not in a wheelchair, I'm pretty much ambulatory, and although I use a cane daily, now, I didn't at first after my surgery. As a result, I was often scrutinized by people who saw me park in a handicap spot and emerge from my then SUV and walk into the store. I just scowl back at them and point to my cool blue placard. A couple of years ago I parked in a disabled spot and emerged to find two older folks approaching me. I was with my girlfriend and said to her, "Oh boy, here goes."
The folks came up to me and asked me, "Are you handicapped?" Mind you, my cool blue was in clear view.
I said, "Look at the placard."
They then said, "So, college kids have been stealing them and using them all around town." First off, I've often been mistaken for being younger than I am, especially when I'm clean-shaven, but give me a break...I did not look a college kid. Secondly, I'm sure not all USC and UCLA students would appreciate being lumped in with placard thieves.
In response to the older folks passive aggressive accusation, I drew out the card given to me to present to airport metal detector monitors in case I set off an alarm with my metal hip and flashed it at these folks. I guess it was that and my accompanying sarcastic grin that forced them to back down and apologize.
As I put the card back in my wallet and walked with my girlfriend into the store I was struck with the reality of discrimination based on my youth as well as my being "more ambulatory" than is acceptable for a disabled person. Here I was a member of a minority class who was being discriminated against based on the fact that I "didn't appear" disabled enough!
But having a cool blue placard comes with great responsibility: unless I'm in extreme pain and/or having great difficulty moving, I never use one of the cool blue spots. I will also surrender the spot to someone who is clearly worse off than I am. It's a great consolation prize for being a disabled person...it really is! But the greatest impact of getting the cool blue was that it was the first step in the public recognition that I am a disabled person.
After my hip replacement, I was given, at long last, one of those cool blue parking placards. It was all the rage with my friends, who suddenly were asking me to hitch a ride more than they had before. In fact, the damn thing got me laid a few times! No kidding...the cool blue placard is a chick magnet.
Of course, to look at me, you wouldn't think I deserve one. I'm not in a wheelchair, I'm pretty much ambulatory, and although I use a cane daily, now, I didn't at first after my surgery. As a result, I was often scrutinized by people who saw me park in a handicap spot and emerge from my then SUV and walk into the store. I just scowl back at them and point to my cool blue placard. A couple of years ago I parked in a disabled spot and emerged to find two older folks approaching me. I was with my girlfriend and said to her, "Oh boy, here goes."
The folks came up to me and asked me, "Are you handicapped?" Mind you, my cool blue was in clear view.
I said, "Look at the placard."
They then said, "So, college kids have been stealing them and using them all around town." First off, I've often been mistaken for being younger than I am, especially when I'm clean-shaven, but give me a break...I did not look a college kid. Secondly, I'm sure not all USC and UCLA students would appreciate being lumped in with placard thieves.
In response to the older folks passive aggressive accusation, I drew out the card given to me to present to airport metal detector monitors in case I set off an alarm with my metal hip and flashed it at these folks. I guess it was that and my accompanying sarcastic grin that forced them to back down and apologize.
As I put the card back in my wallet and walked with my girlfriend into the store I was struck with the reality of discrimination based on my youth as well as my being "more ambulatory" than is acceptable for a disabled person. Here I was a member of a minority class who was being discriminated against based on the fact that I "didn't appear" disabled enough!
But having a cool blue placard comes with great responsibility: unless I'm in extreme pain and/or having great difficulty moving, I never use one of the cool blue spots. I will also surrender the spot to someone who is clearly worse off than I am. It's a great consolation prize for being a disabled person...it really is! But the greatest impact of getting the cool blue was that it was the first step in the public recognition that I am a disabled person.
Consolation Prize # 2 - Dead People
As much flack as I got for being a comic book fan and having played RPGs over the years, nothing I've done has caused as much controversy as my metaphysical activities. For those of you who aren't so sure what metaphysical activities means, it means psychic work and exploration of the unseen world.
By the time I was an undergrad senior at university I was so disillusioned about everything from politics to my own chronic pain, I had a spiritual awakening. Having waged a personal battle with the creator who gave me a body with which I couldn't do those things I wanted to do, I encountered a strange kind of teacher. For lack of a better term and to avoid talking about people involved who might not want to be mentioned, I will call this teacher my angel...my first encounter with many...and I'll call him Robert.
I met Robert in the summer of 1990. I began to work with him as he taught me all sorts of incredible esoteric concepts. At first I wasn't comfortable with Robert's teachings, but, eventually, I began to see physical proof of what he was teaching me. Over a period of several months I learned that my life and my disability had been no accident. There was purpose in my suffering. I was an instrument, a device for transmission, through which ideas and "voices" could speak. Whether it was through my writing or through trance channeling of the dead or disembodied spirits, I was able to help those who like myself suffered with pain, both physical and emotional.
Between the years 1990 and 2002, I was an active member of the metaphysical communities in Dallas and Los Angeles. Because I had lived under scrutiny and outside "normal" society, I discovered that the reaction to my perceived unorthodox activities was not as disturbing to me as it might otherwise have been. Of course, I lost almost all the friends I had to that point but I meet a whole new class of people who were themselves just as "odd" as I was. Most of them weren't physically disabled but they had found that they did not quite fit into the world in which they lived.
As my esoteric studies continued and practices improved, I began to understand that my mental and emotional detachment from my body made me capable of entering trance-like states extremely quickly and very effectively. My faulty body was actually a more efficient tool for channeling and meditation because I was less "grounded" to the physical world. Meditation and the holistic methods I practiced also helped me to control the pain I was experiencing.
However, by the mid-1990s, I began to see too much politics and in-fighting occurring inside the metaphysical community. The so-called "New Age" movement (a term which I never liked to begin with) had become as politically charged and exclusionary and any forward-thinking movement about which I had studied or of which I had been a part. When I moved to L.A. in 1997 I thought about taking as active and public a role as I had in the Dallas metaphysical community. However, before becoming a part of it, I observed it and determined that it, too, was too exclusionary and not forward-thinking. Since 2002 I have kept my practices to myself.
I have no doubt that what I have learned studying the metaphysics has taught me better how to manage my pain and my mental anxiety over being disabled. Again, my track of exploration was intense and, at times, excessive. So, I'm not sure I would encourage most people to explore alternative methods and practices in the way I did. However, there are great benefits that can be derived from developing the mind's power over the body. It can, at the very least, give a disabled person better control over a body which is not entirely under their own control.
I'm sure everyone who reads this entry will have a different reaction to my confession of being a believer in alternative methods, meditation, psychic powers and "the other-side." However, in practical terms, I was able to work for 10 years, coming to terms with my own body without putting any undo stress to worsen my physical disabilities.
But no matter how hard I tried to find answers from the other-side or improved my practices, I continued to experience chronic pain, worse than ever, and my body continued to break down...
By the time I was an undergrad senior at university I was so disillusioned about everything from politics to my own chronic pain, I had a spiritual awakening. Having waged a personal battle with the creator who gave me a body with which I couldn't do those things I wanted to do, I encountered a strange kind of teacher. For lack of a better term and to avoid talking about people involved who might not want to be mentioned, I will call this teacher my angel...my first encounter with many...and I'll call him Robert.
I met Robert in the summer of 1990. I began to work with him as he taught me all sorts of incredible esoteric concepts. At first I wasn't comfortable with Robert's teachings, but, eventually, I began to see physical proof of what he was teaching me. Over a period of several months I learned that my life and my disability had been no accident. There was purpose in my suffering. I was an instrument, a device for transmission, through which ideas and "voices" could speak. Whether it was through my writing or through trance channeling of the dead or disembodied spirits, I was able to help those who like myself suffered with pain, both physical and emotional.
Between the years 1990 and 2002, I was an active member of the metaphysical communities in Dallas and Los Angeles. Because I had lived under scrutiny and outside "normal" society, I discovered that the reaction to my perceived unorthodox activities was not as disturbing to me as it might otherwise have been. Of course, I lost almost all the friends I had to that point but I meet a whole new class of people who were themselves just as "odd" as I was. Most of them weren't physically disabled but they had found that they did not quite fit into the world in which they lived.
As my esoteric studies continued and practices improved, I began to understand that my mental and emotional detachment from my body made me capable of entering trance-like states extremely quickly and very effectively. My faulty body was actually a more efficient tool for channeling and meditation because I was less "grounded" to the physical world. Meditation and the holistic methods I practiced also helped me to control the pain I was experiencing.
However, by the mid-1990s, I began to see too much politics and in-fighting occurring inside the metaphysical community. The so-called "New Age" movement (a term which I never liked to begin with) had become as politically charged and exclusionary and any forward-thinking movement about which I had studied or of which I had been a part. When I moved to L.A. in 1997 I thought about taking as active and public a role as I had in the Dallas metaphysical community. However, before becoming a part of it, I observed it and determined that it, too, was too exclusionary and not forward-thinking. Since 2002 I have kept my practices to myself.
I have no doubt that what I have learned studying the metaphysics has taught me better how to manage my pain and my mental anxiety over being disabled. Again, my track of exploration was intense and, at times, excessive. So, I'm not sure I would encourage most people to explore alternative methods and practices in the way I did. However, there are great benefits that can be derived from developing the mind's power over the body. It can, at the very least, give a disabled person better control over a body which is not entirely under their own control.
I'm sure everyone who reads this entry will have a different reaction to my confession of being a believer in alternative methods, meditation, psychic powers and "the other-side." However, in practical terms, I was able to work for 10 years, coming to terms with my own body without putting any undo stress to worsen my physical disabilities.
But no matter how hard I tried to find answers from the other-side or improved my practices, I continued to experience chronic pain, worse than ever, and my body continued to break down...
Thursday, December 08, 2005
Cast Off!
%2004%20Matthew%20-%20Age%2010%20in%20bodycast.jpg)
Time to lighten the mood! After my dispersions on the medical community and my rant on anger, time to share something with you that is the only photographic proof of my childhood in a body cast.
This photo was taken only minutes before they came in with an electric saw to cut me free from bondage. Once they had, they sat me up and asked me to bend my knees. I couldn't, after some three months of not using them they were locked in place. So, a male nurse took a hold of my ankles and in one quick motion, bent my knees!
Oh shit, I screamed and cried and cursed every bad word I knew at 10, which turned out to be quite a few. My brother who had gone out to the car to grab something and was just coming in through the front door of the facility could hear my shouts from the other side of the building behind a closed door.
Consolation Prize # 1: Acting, Writing & Fantastic Worlds
Having laid out the physical disabilities I live with, I want to talk about the non-physical aspects of my disabilities. However, my intention is not to say, "Hey, check out what great things can happen to you if you're disabled!" I don't believe it's anyone's job to belittle the reality of being disabled by trying to "think-positive" and "encourage" the disabled to not focus on the negative aspect of their lives. Fact is, as I explained when I talked about the positivity of anger, I think negative motivation can be just as positive and even more so than positive motivation. Each disabled person will in their own time find the way to their own light. It's not mine or anyone's right to decide when, where or how they will find that light.
For myself, the benefits of being disabled came out of a simple need to survive. I don't want to let anyone believe that the talents I developed out of being disabled were inspired by anything other than simple survival. Since my body began to break down at such a young age, my only outlet for coping was through my head and my heart. My coping mechanism was to deny the physical reality, even though my avoiding physical activities common to my peers was conspicuous, with which I lived. So, I developed an acute imagination and storytelling gift through which I channeled my anxiety, anger, frustration, sorrow and overall angst at my lot. This process took quite a while to maturate. It began with reading comic books, which featured freakish super-heroes and monsters to whom I could relate, because like me these heroes had a secret about themselves they were hiding. Many of them, especially heroes like The X-Men, The Hulk or Ben Grimm aka The Thing from the Fantastic Four were physically deformed or "monstrous" and therefore spurned by the world they were sworn to protect.
I needed to believe that even though I was "deformed," (and by medical definition I am deformed, even though its not considered extreme or even visible), "disabled" or "not normal" I also had to believe that I could still benefit and even more than benefit be larger than life in an effort to become acceptable by society at large. It's something every kid wants to do, whether disabled or able-bodied.
Since I couldn't amaze my friends and peers with physical achievements I had to capture their attention another way. I wrote short stories and skits which I read or performed in front of class, and I began acting in school productions. In fact, when I was in the sixth grade I adapted, directed and acted in Charles Dickens' A Christmas Carol. Of course I portrayed the Ghost of Christmas Future so I could wear a big cloak that hid my appearance and I didn't have a lick of dialogue. The production actually went off very well. So, I had found an outlet: acting and writing. My teachers, my fellow students and my parents were all very encouraging about my stories and my acting. Over the next several years I would continue to pursue these activities until I hit the worst side effect of my disabilities...
Depression began to set in when I was about 13 or 14 years old. My obesity got out of control and the pain I lived with was out of control. I abandoned my more public persona as a creative person and withdrew into the world of role-playing games or RPGs (i.e., Dungeons & Dragons, Champions, etc.). Like comic books and writing my short stories, through RPGs I was able to create alter-egos of myself who were able to achieve great things without limitation. Although the route to RPGs and my use of them stemmed from my depression over being disabled and my avoidance of real connections with my peers, except the very tight knit group of friends which formed out of my love of comics and RPGs both of which I believe saved my life. Without them I think I would have likely imploded. I had been experiencing suicidal thoughts as early as 7 when the chronic pain and nightterrors associated with Perthes began to take hold. Those suicidal and other powerfully negative emotions I felt I could act out through my creativity in RPGs and never saw the light of the "real" day.
Ironically, the first and primary character I played in Dungeons & Dragons turned out to be very like myself. He was physically weaker than other heroes (through an evil curse), an outcast by his own people, perceived to be negative, even though is actions proved otherwise, and had to compensate for his physical weakness by becoming a sorcerer and powerful wizard. How's that for psychological role-playing therapy?
Eventually, I stopped RPGs during college and began to expand my storytelling abilities by writing my first novel and eventually moving into the world of screenwriting and filmmaking. Those early exercises in performing, reading and drawing my favorite comics and engaging in RPGs sharpened my creative sensibilities and taught me how to create stories which not only expressed my own experience with disabilities but also how to tell exciting, engaging and entertaining stories. The talent for writing and creating allegories of my own struggle and the struggles I see in others lives is now a daily exercise. Having used my creativity to keep myself from succumbing to my manic depression and suicidal thoughts made the exercise of writing, acting, creating stories an absolute necessity. It has kept me alive.
For myself, the benefits of being disabled came out of a simple need to survive. I don't want to let anyone believe that the talents I developed out of being disabled were inspired by anything other than simple survival. Since my body began to break down at such a young age, my only outlet for coping was through my head and my heart. My coping mechanism was to deny the physical reality, even though my avoiding physical activities common to my peers was conspicuous, with which I lived. So, I developed an acute imagination and storytelling gift through which I channeled my anxiety, anger, frustration, sorrow and overall angst at my lot. This process took quite a while to maturate. It began with reading comic books, which featured freakish super-heroes and monsters to whom I could relate, because like me these heroes had a secret about themselves they were hiding. Many of them, especially heroes like The X-Men, The Hulk or Ben Grimm aka The Thing from the Fantastic Four were physically deformed or "monstrous" and therefore spurned by the world they were sworn to protect.
I needed to believe that even though I was "deformed," (and by medical definition I am deformed, even though its not considered extreme or even visible), "disabled" or "not normal" I also had to believe that I could still benefit and even more than benefit be larger than life in an effort to become acceptable by society at large. It's something every kid wants to do, whether disabled or able-bodied.
Since I couldn't amaze my friends and peers with physical achievements I had to capture their attention another way. I wrote short stories and skits which I read or performed in front of class, and I began acting in school productions. In fact, when I was in the sixth grade I adapted, directed and acted in Charles Dickens' A Christmas Carol. Of course I portrayed the Ghost of Christmas Future so I could wear a big cloak that hid my appearance and I didn't have a lick of dialogue. The production actually went off very well. So, I had found an outlet: acting and writing. My teachers, my fellow students and my parents were all very encouraging about my stories and my acting. Over the next several years I would continue to pursue these activities until I hit the worst side effect of my disabilities...
Depression began to set in when I was about 13 or 14 years old. My obesity got out of control and the pain I lived with was out of control. I abandoned my more public persona as a creative person and withdrew into the world of role-playing games or RPGs (i.e., Dungeons & Dragons, Champions, etc.). Like comic books and writing my short stories, through RPGs I was able to create alter-egos of myself who were able to achieve great things without limitation. Although the route to RPGs and my use of them stemmed from my depression over being disabled and my avoidance of real connections with my peers, except the very tight knit group of friends which formed out of my love of comics and RPGs both of which I believe saved my life. Without them I think I would have likely imploded. I had been experiencing suicidal thoughts as early as 7 when the chronic pain and nightterrors associated with Perthes began to take hold. Those suicidal and other powerfully negative emotions I felt I could act out through my creativity in RPGs and never saw the light of the "real" day.
Ironically, the first and primary character I played in Dungeons & Dragons turned out to be very like myself. He was physically weaker than other heroes (through an evil curse), an outcast by his own people, perceived to be negative, even though is actions proved otherwise, and had to compensate for his physical weakness by becoming a sorcerer and powerful wizard. How's that for psychological role-playing therapy?
Eventually, I stopped RPGs during college and began to expand my storytelling abilities by writing my first novel and eventually moving into the world of screenwriting and filmmaking. Those early exercises in performing, reading and drawing my favorite comics and engaging in RPGs sharpened my creative sensibilities and taught me how to create stories which not only expressed my own experience with disabilities but also how to tell exciting, engaging and entertaining stories. The talent for writing and creating allegories of my own struggle and the struggles I see in others lives is now a daily exercise. Having used my creativity to keep myself from succumbing to my manic depression and suicidal thoughts made the exercise of writing, acting, creating stories an absolute necessity. It has kept me alive.
Upside Of Anger
Now that I walk with a cane, every day, and I can no longer hide the disabilities as I once could, the question I get asked most often is: how do you deal with it? How do you deal with the pain? Well, obviously I use medicine, but for the years when I didn't my answer is simple: I just did it. I just dealt with it, buried it, covered it and kept going. It's the question my orthopedic surgeon asked me when I walked into his office back in 2000: how is it your walking?
As bad as my crushed hip was, I shouldn't have been walking, but I was walking. So, my answer to him was: I didn't know I couldn't walk. The will to deny and overcompensate for my childhood, now adult, disability had become subconscious; it was an automated program that just kept running. My will had found something to fuel it for which I had become completely unaware of. So, what was the fuel that kept me going?
It was, still is, to be honest, anger, pure and simple. I was full of anger, rage and, yes, hate for my conditions. I felt I was making a statement not just against my conditions but against whatever creator was up there that would stick a kid as well as an adult with such a shitty fate. Believe me I have heard a thousand stories of "disabled" people who turned to God to save them or that blaming God is a cop-out for accepting physical reality as it actually is. So, before I introduce another controversial stance towards life with a disability, let me just say it straight out: I hate God, nature, genetic fate, whatever the hell you want to call it, for giving me every shitty recessive gene in my family!
No child deserves to be born crippled, addicted to crack or mentally retarded...NO CHILD DESERVES SUCH A FATE! And nothing that any priest, minister, psychologist can say to ever rationalize such a bullshit fate can even remotely justify what it feels like to a kid, let alone the parent(s) who watch their own child suffer, who can't like other healthy kids enjoy life!
But before I get too carried away...understand that this is just a brief example of my anger...my fuel...my will to overcome my unjustified existence. For me, it was nothing less than declaring war on the creator I was taught about in Lutheran Church and the faulty genetic strain I was stuck with. And I believe that anyone who has ever suffered unjustly has just as much of a right to feel whatever "unacceptable" emotions are born from such a struggle. Whether a person's suffering is racially motivated, politically motivated, genetically motivated, the victims of suffering have a right to be angry!
Anger is power!
As bad as my crushed hip was, I shouldn't have been walking, but I was walking. So, my answer to him was: I didn't know I couldn't walk. The will to deny and overcompensate for my childhood, now adult, disability had become subconscious; it was an automated program that just kept running. My will had found something to fuel it for which I had become completely unaware of. So, what was the fuel that kept me going?
It was, still is, to be honest, anger, pure and simple. I was full of anger, rage and, yes, hate for my conditions. I felt I was making a statement not just against my conditions but against whatever creator was up there that would stick a kid as well as an adult with such a shitty fate. Believe me I have heard a thousand stories of "disabled" people who turned to God to save them or that blaming God is a cop-out for accepting physical reality as it actually is. So, before I introduce another controversial stance towards life with a disability, let me just say it straight out: I hate God, nature, genetic fate, whatever the hell you want to call it, for giving me every shitty recessive gene in my family!
No child deserves to be born crippled, addicted to crack or mentally retarded...NO CHILD DESERVES SUCH A FATE! And nothing that any priest, minister, psychologist can say to ever rationalize such a bullshit fate can even remotely justify what it feels like to a kid, let alone the parent(s) who watch their own child suffer, who can't like other healthy kids enjoy life!
But before I get too carried away...understand that this is just a brief example of my anger...my fuel...my will to overcome my unjustified existence. For me, it was nothing less than declaring war on the creator I was taught about in Lutheran Church and the faulty genetic strain I was stuck with. And I believe that anyone who has ever suffered unjustly has just as much of a right to feel whatever "unacceptable" emotions are born from such a struggle. Whether a person's suffering is racially motivated, politically motivated, genetically motivated, the victims of suffering have a right to be angry!
Anger is power!
Pain Management By Mary Jane
Since 2004 I have taken many avenues looking for pain relief. And what I've found truly ironic is that what the health care professionals, as well as individuals outside the system, have the biggest issue with is methods of pain relief. The fact is that what makes life most difficult for anyone with a disability is not necessarily the disability itself but the side effects and, most often, the pain and suffering it causes. American culture doesn't like suffering. We are a self-indulgent culture and we don't like to be bothered or interrupted while we are going about our business. Because Americans are a self-abusive and addictive people those who don't have real pain abuse most anything they are giving to help relieve even the most minor pain. Consequently, those who do suffer chronic and/or severe pain pay the price. In other words, psychically damaged people abuse medicines designed for those who suffer with concrete physical pain.
I have used cigarettes, alcohol, food, Vicodin and Ibuprofin to combat my pain. All of these are legal but they all have terrible side effects when abused. In fact, using them can actually make a disabled person worse than they already are. However, I had never used anything that is considered "illegal." I had never used "drugs." But when the HMO and the medical system was no longer willing to work with me and provide me with the pain management I need, I went outside the system and investigated "herbal" treatments.
In my need to find relief and be functional while my body continues to rebel against my mind and my need to be productive, I have become even more radical and liberal than I already was! The reality that I am disabled, that I am a minority who is not allowed by the health care/corporate/political system to seek those means necessary to make me live as healthy a life as I can, has put me on the fringe and made my choice controversial.
How many disabled and suffering Americans live outside these forward thinking states and are forced to take poorly managed and highly dangerous drugs to relieve their pain? I don't know what if anything I can personally do to reach out and give hope to others who suffer, but I sure as hell am going to try. And I have come to realize that my creative gifts born from my disabilities are a means to that end.
I have used cigarettes, alcohol, food, Vicodin and Ibuprofin to combat my pain. All of these are legal but they all have terrible side effects when abused. In fact, using them can actually make a disabled person worse than they already are. However, I had never used anything that is considered "illegal." I had never used "drugs." But when the HMO and the medical system was no longer willing to work with me and provide me with the pain management I need, I went outside the system and investigated "herbal" treatments.
In my need to find relief and be functional while my body continues to rebel against my mind and my need to be productive, I have become even more radical and liberal than I already was! The reality that I am disabled, that I am a minority who is not allowed by the health care/corporate/political system to seek those means necessary to make me live as healthy a life as I can, has put me on the fringe and made my choice controversial.
How many disabled and suffering Americans live outside these forward thinking states and are forced to take poorly managed and highly dangerous drugs to relieve their pain? I don't know what if anything I can personally do to reach out and give hope to others who suffer, but I sure as hell am going to try. And I have come to realize that my creative gifts born from my disabilities are a means to that end.
A Real Pain In The Ass
Even though having an artificial hip, bad back and neurological pain in my feet and legs was frightening and overwhelming, I understood that what had been making my life a living hell and would continue to do so was pain. I couldn't do anything to completely remedy my disabilities but I could remedy the pain, and I could make sure that how my disabilities were affecting my life would change. But this turned out to be the hardest battle of all.
Health care in the U.S. sucks. Let's make no bones about it. HMOs really suck. It's a scam. The pharmaceutical industry is in bed with the politicians and the medical industry is caught in between. Giant corporations, who are in bed with the insurance companies, own hospitals and the patients are caught in between. Neither doctors nor patients have the power to change this heinous system, so the doctors aren't able to help the patients who don't have enough money to pay for their services directly out of their pockets.
I knew all of this in the abstract, but now I know it personally. I have exhausted what I can get out of my HMO (Pacificare) and my HMO doctors won't help me any further than they have. I can no longer get the medication, which has helped me cope with my pain, and the medication they want to give me has side effects I am not prepared to endure. My HMO does not cover the physical therapy I need to help me overcome my pain and strengthen my body even as it falls apart. My HMO does not cover the physical therapy I need to help me overcome my pain and strengthen my body even as it falls apart.
Health care in the U.S. sucks. Let's make no bones about it. HMOs really suck. It's a scam. The pharmaceutical industry is in bed with the politicians and the medical industry is caught in between. Giant corporations, who are in bed with the insurance companies, own hospitals and the patients are caught in between. Neither doctors nor patients have the power to change this heinous system, so the doctors aren't able to help the patients who don't have enough money to pay for their services directly out of their pockets.
I knew all of this in the abstract, but now I know it personally. I have exhausted what I can get out of my HMO (Pacificare) and my HMO doctors won't help me any further than they have. I can no longer get the medication, which has helped me cope with my pain, and the medication they want to give me has side effects I am not prepared to endure. My HMO does not cover the physical therapy I need to help me overcome my pain and strengthen my body even as it falls apart. My HMO does not cover the physical therapy I need to help me overcome my pain and strengthen my body even as it falls apart.
Wednesday, December 07, 2005
On My Nerves
While the symptoms I have been experiencing since 2004 could be caused by my spinal problems and the arthritis, a new possibility popped up while seeing the six specialists. It was the opinion of three of the five had I seen that I might have peripheral neuropathy: a neurological problem that results in constant (sometimes severe) pain in the legs (or arms) with no determinable cause. Many things can cause neuropathy. Most often Diabetes is the cause, but I was tested and diabetes was ruled out.
The neurologist I was consulting with conducted an EMG test on my legs, but the results didn't show any permanent nerve damage. However, at the recommendation of my orthopedic surgeon and neurologist I consulted with a neurosurgeon about my spine. He examined me to see if my spine was causing the pain but determined that my spinal problems were not yet severe enough. However, based on my symptoms and a sensory examination diagnosed me with peripheral neuropathy as well as definite areflexia. Areflexia is a loss of the "knee jerk" reaction that happens when a doctor hits your knees and ankles with that funky rubber mallet.
Shit, I was freaked out! Not only did I have the bone problems, but it looked likely I was confronting neurological trouble as well. The neurosurgeon told me that although the EMG didn't conclusively prove neuropathy, I had all the classic signs. On top of that, EMG tests often times don't reveal neuropathy.
Bottom line: I was seriously messed up. At age 38 I had a body more broken than someone twice my age!
Realizing now that if my immediate problems were likely connected to neuropathy my only viable option was pain management. Although surgery could correct at least one of my spinal problems it was absolutely no guarantee of pain relief. And considering I had already gone through at least two major surgeries either, of which, could likely be a cause for neuropathy and the inherent dangers of any back procedure, I decided not to get surgery.
The neurologist I was consulting with conducted an EMG test on my legs, but the results didn't show any permanent nerve damage. However, at the recommendation of my orthopedic surgeon and neurologist I consulted with a neurosurgeon about my spine. He examined me to see if my spine was causing the pain but determined that my spinal problems were not yet severe enough. However, based on my symptoms and a sensory examination diagnosed me with peripheral neuropathy as well as definite areflexia. Areflexia is a loss of the "knee jerk" reaction that happens when a doctor hits your knees and ankles with that funky rubber mallet.
Shit, I was freaked out! Not only did I have the bone problems, but it looked likely I was confronting neurological trouble as well. The neurosurgeon told me that although the EMG didn't conclusively prove neuropathy, I had all the classic signs. On top of that, EMG tests often times don't reveal neuropathy.
Bottom line: I was seriously messed up. At age 38 I had a body more broken than someone twice my age!
Realizing now that if my immediate problems were likely connected to neuropathy my only viable option was pain management. Although surgery could correct at least one of my spinal problems it was absolutely no guarantee of pain relief. And considering I had already gone through at least two major surgeries either, of which, could likely be a cause for neuropathy and the inherent dangers of any back procedure, I decided not to get surgery.
Then & Now - Lumbar Spine
.jpg)
Above are the 1994 X-ray (top) and the 2005 MRI of my lumbar spine which clearly show the slippage of my vertebrae. I attempted to scan in the MRI of my stenosis but it just wasn't coming out clear enough. When I can get that done, I will post it.
On the 1994 X-ray you can see an arrow drawn by the chiropractor pointing out the slippage. On the scan of the MRI I have photoshopped in red lines to show the alignment of my sacrial bone, while using a green line to show the alignment of the preceding vertebrae. Although there isn't a great increase in the slippage between the X-ray and MRI (thank God) there is degeneration of the bone in the MRI, as well as some visibility of the shrinkage at the base of the spine leading to possible pressure on the cord.
Back Off, Brother!
Between my two hip diagnoses, in the summer of 1994, I was in a car accident that totaled my Honda Civic. Similarly to my being hit by the truck as a kid, I walked away from the accident; in fact, I drove my totaled car home. I saw a chiropractor because of back and neck pains and after an X-Ray was taken of my spine, I was diagnosed with a potentially dangerous spinal condition. The technical definition is grade II spondylolisthesis L5 on S1 with partial degeneration of the L5 disc space. In lay terms the last vertebrae on my spine had slipped forward off my tailbone and there was degeneration of my lower spine. According to the chiropractor even the mildest of apparent falls or accidents to my lower back could damage my spinal cord.
Not good...
However, with the same gift for denial I displayed for my hip disability I ignored my spinal condition and continued to ignore my problems and press on engaging in activities that could very well worsen my hip condition and now my spine as well. Believe it or not, I buried this diagnosis and eventually forgot about it all together...until the summer of 2005.
Beginning in middle 2004, I began to suffer pain, again. At first I thought the pain was further arthritis, something connected to my osteoarthritis but now spreading to my feet and ankles when the pain was the worst. However, I was also experiencing radiating shooting pains up and own both legs as well as severe Charley Horses in both legs. I would wake in the middle of the night screaming and had severe bouts of insomnia. I returned to walking with a cane, which I used following my hip replacement. Other symptoms appeared different from anything I had experienced with my arthritis problems.
A series of X-rays were taken of my feet, where the pain was most severe, my artificial hip and my left hip. The X-rays revealed my feet were fine and so was my artificial hip. However, my left hip was showing signs of early osteoarthritis. There was mild degeneration and some malformation of the head, but it wasn't anything my doctors were concerned about.
Eventually, after seeing six different specialists and battling with my primary physician, I had an MRI taken of my lower spine. It revealed the spinal problem first diagnosed in 1994, as well as a further problem: bilateral foramnia stenosis. In lay terms, my spinal column was shrinking from both sides, resulting in possible pressure on my cord. There was also continued deterioration of the bone. This could easily explain the new pains and complications I was experiencing. The only solution to stopping the continued slippage of my spine was back surgery. It wouldn't necessarily help the shrinkage. Either way, I was looking at another major surgery.
What an idiot! I had ignored my spine and now it was cropping up, again! Which just goes to show the power of the mind when it's confronting a problem it doesn't want to recognize. As a result, I was looking at major structural problems. These problems were chronic, debilitating and I was never going to be able to ignore being disabled, again.
Not good...
However, with the same gift for denial I displayed for my hip disability I ignored my spinal condition and continued to ignore my problems and press on engaging in activities that could very well worsen my hip condition and now my spine as well. Believe it or not, I buried this diagnosis and eventually forgot about it all together...until the summer of 2005.
Beginning in middle 2004, I began to suffer pain, again. At first I thought the pain was further arthritis, something connected to my osteoarthritis but now spreading to my feet and ankles when the pain was the worst. However, I was also experiencing radiating shooting pains up and own both legs as well as severe Charley Horses in both legs. I would wake in the middle of the night screaming and had severe bouts of insomnia. I returned to walking with a cane, which I used following my hip replacement. Other symptoms appeared different from anything I had experienced with my arthritis problems.
A series of X-rays were taken of my feet, where the pain was most severe, my artificial hip and my left hip. The X-rays revealed my feet were fine and so was my artificial hip. However, my left hip was showing signs of early osteoarthritis. There was mild degeneration and some malformation of the head, but it wasn't anything my doctors were concerned about.
Eventually, after seeing six different specialists and battling with my primary physician, I had an MRI taken of my lower spine. It revealed the spinal problem first diagnosed in 1994, as well as a further problem: bilateral foramnia stenosis. In lay terms, my spinal column was shrinking from both sides, resulting in possible pressure on my cord. There was also continued deterioration of the bone. This could easily explain the new pains and complications I was experiencing. The only solution to stopping the continued slippage of my spine was back surgery. It wouldn't necessarily help the shrinkage. Either way, I was looking at another major surgery.
What an idiot! I had ignored my spine and now it was cropping up, again! Which just goes to show the power of the mind when it's confronting a problem it doesn't want to recognize. As a result, I was looking at major structural problems. These problems were chronic, debilitating and I was never going to be able to ignore being disabled, again.
Before & After - Weight Loss
The upside (if there can be one) of my hip replacement was my significant weight loss. As mentioned, I was a food addict and extremely lethargic as a result of Perthes and the chronic pain. From ages 10 to 33 I battled obesity (oftentimes morbidly obese). I was obese for so long I couldn't have even imagined what I looked like after I lost the 100lbs. I had to lose in order to have a successful hip replacement. I used the Atkins Diet to achieve my weight loss, but I wouldn't recommend it for most people. It worked for me because of my large frame and heavy musculature helped my body withstand the tremendous stress the diet put on it.
I could never imagine the impact it had not only on how others saw me but on how I saw myself. It was completely bizarre! When I flew home to see my family for the first time since the massive weight loss, my own father, who had driven to the airport to pick me up, passed me by at the terminal. I had to shout out to him before he registered it was me.
I decided I'd show you the difference because it's as drastic as the contrast in the X-rays below. I chose the pictures from my drivers licenses that bookended the weight loss. I don't guess I need to tell you which is the before and which is the after. I was stuck with the before drivers license for two years after the actual weight loss, and in that time I had bouncers, cops and insurance agents tell me that I needed to change the picture, asap. They thought it wasn't me in the picture!
I'm going to write in detail later about how the weight loss and hip replacement directly affected my relationships. But I want to finish explaining the rest of my disabilities.
Before & After - Hip Replacement
The top X-ray was taken early in 2000 after osteonecrosis destroyed my right hip. I apologize for the poor quality, but this is the best scan I could manage. There are fractures all across the head of the bone, and any healthy normal rounded shape is gone. It's almost completely flat. This is the direct result of a lack of healthy blood flow to the area, as well as continued deterioration even after my initial corrective surgery back in 1977.
The lower X-ray shows my artificial hip in 2003. Quite a contrast! This is what an uncemented full hip replacement looks like. The metal joint floats freely inside the cup attached to my pelvic bone, which means I have a larger range of motion than were it cemented. However, it also means that it could under enough stress pop out of the cup and surgery would be required to pop it back into the socket.
Hip? I Know Hip.
In May of 1977, at age 9, just a couple of weeks before the premiere of "STAR WARS," I was diagnosed with avascular necrosis and Legg-Calve-Perthes Disease (or "Perthes"). Avascular necrosis is a disorder that prevents bloodflow to a certain section of the body. In my case, the right hip. Perthes is a debilitating and often times crippling form of arthritis condition that results in the deterioration of the head of one or both hipbones. Fortunately, it was my right hip only.
I had since age 7 displayed symptoms common to the condition: severe limp, night terrors, my right foot was pigeon-toed. However, only months before my diagnosis I was asymptomatic (no visible deterioration). In only a number of weeks my hipbone collapsed. There was no definitive cause for this condition, although there have been theories: at age 6 or 7 I was hit by a truck in the street. There was no visible damage, not even a bruise. There was also a possible genetic component: both my mother's father and her brother had hip conditions but not Perthes, specifically. Regardless of the cause, I had corrective surgery. I was in a body cast for almost ten weeks and then crutches for another five or six months.
While I was trapped in that cast, stuck in a hospital bed and later in a hospital bed at home, I was a real shit. Nurses actually transferred off the floor of the hospital so they wouldn't have to deal with me. But nothing was worse than the hole in the crotch of my cast. I had to pee into a plastic bottle, which I missed more than a few times and that was a whole damn thing. My muscles spasmed nightly and I was injected with muscle relaxants so that I could go back to sleep. Then there was the embarrassment...of my equipment...being visible...for all the world to see. Sometimes my mother would forget to pull the blanket over my boys when someone came by to see me. I would reach out desperately to grab the sheets, but they were always out of my reach. And then I'd have to flipped over like a pancake so my ass crack could breathe...and that was just as bad. I wouldn't let myself be naked in front of another human being, again, until I was in college.
After I appeared to make a full recovery, I was able to shove this disability aside and function like an able-bodied child, teen and adult, albeit with certain restrictions and unrecognized but significant side effects. I became obese, morbidly at times. I suffered chronic arthritis pain, which affected my personality and relationships. I suffered bouts of severe depression. Although I was in therapy for almost 13 years, the underlying reality of my being disabled and my chronic pain went unrecognized and untreated by everyone, including myself. I was never able to pursue physical activities like my peers and spent a create deal of time inside my own imagination coping with my physical pain. Intimacy with others was limited. I became a food addict to cover my pain. At my lowest point I weighed in at 315lbs. I was HUGE!
At age 31, I recognized the same symptoms recurring as when I was 9. The pain I had lived with for almost my entire life was then overwhelming. After almost a year, I finally found an orthopedic surgeon who recognized my disability and I was diagnosed with osteonecrosis - the adult form of Perthes. My right hip had re-collapsed. How I was able to walk was a mystery to the surgeon, who told me my only option was a total hip replacement. However, I was so fat no replacement would take. He told me that if I didn't loose weight I would be crawling into his office on my hands and knees in six months begging for surgery. I spent the next year losing over 100lbs.
In January of 2001, I had a total hip replacement. It took me almost nine months to fully recover, and I have never gained the weight back.
I had since age 7 displayed symptoms common to the condition: severe limp, night terrors, my right foot was pigeon-toed. However, only months before my diagnosis I was asymptomatic (no visible deterioration). In only a number of weeks my hipbone collapsed. There was no definitive cause for this condition, although there have been theories: at age 6 or 7 I was hit by a truck in the street. There was no visible damage, not even a bruise. There was also a possible genetic component: both my mother's father and her brother had hip conditions but not Perthes, specifically. Regardless of the cause, I had corrective surgery. I was in a body cast for almost ten weeks and then crutches for another five or six months.
While I was trapped in that cast, stuck in a hospital bed and later in a hospital bed at home, I was a real shit. Nurses actually transferred off the floor of the hospital so they wouldn't have to deal with me. But nothing was worse than the hole in the crotch of my cast. I had to pee into a plastic bottle, which I missed more than a few times and that was a whole damn thing. My muscles spasmed nightly and I was injected with muscle relaxants so that I could go back to sleep. Then there was the embarrassment...of my equipment...being visible...for all the world to see. Sometimes my mother would forget to pull the blanket over my boys when someone came by to see me. I would reach out desperately to grab the sheets, but they were always out of my reach. And then I'd have to flipped over like a pancake so my ass crack could breathe...and that was just as bad. I wouldn't let myself be naked in front of another human being, again, until I was in college.
After I appeared to make a full recovery, I was able to shove this disability aside and function like an able-bodied child, teen and adult, albeit with certain restrictions and unrecognized but significant side effects. I became obese, morbidly at times. I suffered chronic arthritis pain, which affected my personality and relationships. I suffered bouts of severe depression. Although I was in therapy for almost 13 years, the underlying reality of my being disabled and my chronic pain went unrecognized and untreated by everyone, including myself. I was never able to pursue physical activities like my peers and spent a create deal of time inside my own imagination coping with my physical pain. Intimacy with others was limited. I became a food addict to cover my pain. At my lowest point I weighed in at 315lbs. I was HUGE!
At age 31, I recognized the same symptoms recurring as when I was 9. The pain I had lived with for almost my entire life was then overwhelming. After almost a year, I finally found an orthopedic surgeon who recognized my disability and I was diagnosed with osteonecrosis - the adult form of Perthes. My right hip had re-collapsed. How I was able to walk was a mystery to the surgeon, who told me my only option was a total hip replacement. However, I was so fat no replacement would take. He told me that if I didn't loose weight I would be crawling into his office on my hands and knees in six months begging for surgery. I spent the next year losing over 100lbs.
In January of 2001, I had a total hip replacement. It took me almost nine months to fully recover, and I have never gained the weight back.
Subscribe to:
Posts (Atom)
