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.

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.

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.

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.