The Masochism of Meaning

I have to begin with Happy Birthday, Laura! I love you so much! It's my girlfriend of 4 years birthday today, and I have to say that she has been my biggest supporter and biggest hero during my ongoing fight with disability. She has never wavered or been anything other than encouraging and optimistic even when I've been in my darker places. I can only hope that those of you who like me live with chronic pain can find someone to love you unconditionally in the wake of this terrible enemy.

I also have to say I couldn't be happier with the results of last Tuesday's mid-term elections. I don't want to skew anyone's view of me based on my political proclivities; however, I truly believe that those who suffer under the weight of medical problems can only benefit by having a Democratic congress. The Republicans goals to privatize Social Security and the most recent Prescription Drug Plan has done nothing less than undercut the aged and chronically ill. So, I can only hope now that the Democrats will made good on their pledge to change the destructive course of our neo-con leaders, help those who depend on assistance and to help stop a war which has needlessly taken the lives of American and Iraqis alike and destroyed the lives of those who have thus far survived.

OK, moving on to the final installment in my catch up from May, it's time to fill you in on the progress of my feature film project "Art Imitating Life." I'd like to tell you production is underway or shot and in the can, but as is the way of independent filmmaking we continue to find that final gap funding to get it all going. My primary production partner Haylee Twombly is doing a fantastic job juggling what are now three different groups who are seeking the gap financing. We still have one party who is prepared to give us almost all the money we need; however, we won't get going until it's all there. Too often indie films will get partial financing and during the filming of the picture loose it or not find the completion funds and the project stops dead before it's finished. I don't want that situation. This film is too important to not guarantee its completion and release.

It's a good thing that I'm use to pain and suffering because the bottom line is filmmaking is the purest form of masochism. The constant rejection, disappoint and failure to accomplish the mission of shooting a picture can really tear a person up inside. More over, my insistence that I be the one to physically direct this movie is absurd on so many levels because the stress it will put on my body is not going to help my complications or pain management. The stress alone is a big contribution to my daily problems. But if I don't, then this picture will not have what all other disability films have lacked, a true first-person vision of what it is to live with chronic pain. It's that goal, that aspiration that makes the suffering meaningful.

As long as suffering has meaning, it can be endured. Don't count on the meaning being explained by anyone else, and it won't come immediately. That meaning has to be discovered by the sufferer. And that's one of my other goals is to give anyone who suffers against a situation, physical or otherwise, over which they ultimately have no control to give it a meaning. It's not an easy task finding meaning in any condition of which a person becomes a victim, but it's facing that masochism of meaning that stops a person from being a victim and becoming a victor.

And so the work to get my film financed and production underway continues...

From 3 to 4 a Day

Continuing backwards from what I've been up to since May, here's the skinny on my continued battle with chronic pain and my medications:

The pain is worse. No surprise. But you never are prepared or can really mentally adjust prior to a greater amount hitting your body. It's human nature to resist not accept pain (unless you're into the S&M, but believe me...I don't believe pain = pleasure -- no judgment on those who do; it's just not my thing). As a result, as much as I've known it would get worse, I was not prepared for the increased amount of pain. The only choice was to go back to my pain management specialist and get an increase in medication. After consulting with him, I'm up to four Hydrocodone (aka Vicodin) a day.

Whereas at one time I could get at least four to five hours of relief from a single Vicodin, that declined to no more than three hours of relief. I put up with the gaps in comfort for almost a month-and-a-half, but Laura and my friends just didn't understand why I would suffer when I could get relief. The truth is that an increase in pain medication would mean further acknowledgment of my decline. It sucks! As much as my psyche intellectually understands that decline is inevitable, emotionally, I want to rail against it. I want to scale the mountain and scream to Heaven...STOP THE PAIN! But that's not how it works. And, so, I headed back to my pain management specialist and an increase in pain medication was prescribed.

I joked when my use of Vicodin for pain management started that I really was like the FOX TV character House, who, if you don't know, uses Vicodin for pain management and also walks with a cane. Of course, I imagined that he probably took more than three a day, but now that I'm taking four, I'm thinking I'm right with this fictional bastard.

I'm not sure if I previously discussed why my two pain management therapists felt comfortable about prescribing an opiate that generally is viewed as an addictive agent that has, according to the media, destroyed lives over and over again. In general, there are two types of physicians, those who understand chronic pain and those who do not. Those who do not still view pain as a nuisance not a genuine condition or disability that deserves treatment. The other school of thought is that chronic pain is a legitimate condition that should be treated based on a patient's individual need to be comfortable.

My pain management specialists have determined, based on examination and testing that I have a physiology and psychology which can utilize opiates without the grave danger of addiction which the general public assumes everyone in the world will succumb to. The fact is that when the body is in pain, opiates work in such a way that the body doesn't become addicted to the opiate because the body is already addicted to the pain. The chemistry of the body and brain has been permanently altered by the continual assault from pain so that it doesn't become addicted like a "healthy" body and brain does.

A chronic pain victim has a difficult enough time coping with the pain itself, they shouldn't be made to feel like a drug addict because they want relief from it. To make someone who suffers constantly feel worse for wanting relief is pathetic and downright cruel.

In addition to the change in my Vicodin regimen I am now on a drug called Cymbalta, which, as you might have seen on TV commercials, is largely prescribed as a depression medication. I have since over the course of this year previously been prescribed Lexapro and Effexor for my depression as well as chronic pain. I've been switched to Cymbalta because in addition to depression, Cymbalta is also prescribed for neuropathy related to diabetes. I don't have diabetes, but the hope of my therapist and myself is that it will work on my neuropathy as both Neurontin and Lyrica haven't yielded comfort without serious side effects worse than pain relief.

I don't know how much someone who doesn't exist without medication can appreciate just what a bitch it is to have to constantly juggle monitoring the effects and administration of drugs. I have to make sure that every four hours I pop a Vicodin, and that's something easy to forget. But when the pain hits, boy, do I realize I forgot to take my medication thirty minutes ago.

In addition to my change in medication, the complications from the chronic pain have increased and begun interfering even further with my ability to do what I love to do...write. Sitting has been one of the problems, but now it's downright hellish. My ass hurts all the time! The base of my spine feels like swords are being stabbed into it. My legs feel weaker and my feet...well, my feet hurt all the time...ALL THE TIME!

OK, I'm really writing a depressing entry here...and I don't want it to be totally depressing. But the complications from sitting are leading me and Laura to discuss getting a voice program so that I can continue to write while shifting between sitting and standing. This difficulty sitting has kept me from writing as much as I want on this blog as well as my fictional writing. I'm going to work very hard to resolve this, because writing is what I do best.

As much as altering my writing habits are a necessity, each and every little thing I do in and around our apartment is being adjusted. I've always prided myself as a dude who knew how to keep his domicile clean. Making the bed, mopping, vacuuming, washing dishes and cleaning out our cat's litter box make me feel like I'm in control of my life and contributing to the well-being of the family. Now, even these mundane tasks result in my feeling unbearable pain afterwards. So, my incredible girlfriend, who works a full-time job, has to come home and do chores which I at one time was able to do myself.

The loss of personal freedom and the functionality to control your environment wreaks havoc with the mind of the chronic pain sufferer. So much of what a healthy person can do on a daily basis becomes unappreciated and taken for granted unless it can't be done anymore. Because I've had severe arthritis my entire life, I've always told people, you have no idea of how important joints are until you don't have them. They are vital to each and every physical action taken no matter how mundane. Now, more than ever, I believe that but not just about the joints. I believe that about each and everything a person can do no matter how mundane the action appears to be. This is one reason I am such a huge football fan. When I see those athletes performing on the field I am in awe because at no point in my life have I ever or will ever be able to do even a tenth of what they can achieve.

For those of you who love someone suffering with chronic pain, please understand that each and every action is meaningful for the sufferer and never take for granted even the most menial task. For those of you who do suffer with chronic pain, please pace yourself. Your body will tell you when too much is too much. You must listen to it. If you have to go from doing dishes once a day to every other day or every third day, do it. Don't be afraid to ask those you love to help you. Because they feel helpless in the wake of your condition, those who love you will find comfort in doing more around the house because it gives them an ability to help participate in your relief which will help them not feel so powerless.

Compensation and improvisation is the key to battling chronic pain. It can't be regimented for long and it keeps you on your mental toes, but at least it helps make you realize that no matter how bad your condition is, you are still in control of your life.

All right, my friends, that's it. My butt hurts. My legs are stiff. My feet are hurting. And I've done all the writing I can do for today.

Peace!

Court of Injustice Now In Session!

What have I been doing since May?

(a) Working with my production partners to get financing locked down and production rolling on "Art Imitating Life."

(b) Adjusting my pain medications and everyday coping with my chronic conditions.

(c) Battling for my disabilities benefits.

I've let it keep me from blogging, but now I'm going to try and inform all of you on what I've learned. But first, I want to say a big thank you to all of you who have sent me encouraging messages. It's never easy to talk openly about disability, not to mention associated obstacles, but when the feedback is so positive, it gives me the fuel to keep writing.

From back to front (cause that's just the way my brain works), my fight for my disability rights has gotten downright gory. On June 15th I was notified by the EDD (the CA office that deals with disability rights) that I no longer had the rights for which I had paid while able to work a "regular and customary" job. Even though my primary physician had signed a Doctor's Certificate January of this year stating clearly that the earliest I could be re-valuated for possible return to work was June of 2010, I was now going to have to see a state paid doctor for independent evaluation. Pending this doctor's decision I continued to receive benefits.

When I arrived to see this doctor on July 26th, I was examined for no longer than 10 mins. No kidding. I had brought along my medical records, x-rays and my spinal MRI to show this doctor what had been determined by 9 previous specialists. When I offered to show this doctor my evidence, he said, "That's OK. I don't need to see them. It doesn't matter what any other specialists said, previously." He then proceeded to say that the x-rays and MRI's don't mean anything either as anyone afflicted with my conditions can show different symptoms and some people are fully functional regardless of my conditions. In other words, he was totally discounting my individual reaction to my conditions. So, in a nutshell, he refused to see my records and evidence.

The doctor (who will remain nameless at this point) seemed like an OK guy. I have previously spoken here about how I have had to overcome a strong prejudice about physicians based on my traumatic experiences from childhood due to my Legg-Perthes and other physical defects. So, I wanted to give this guy the benefit of the doubt and consider him a reputable and honorable physician.

On August 11th, I received determination from the EDD that their state doctor ruled me no longer disabled enough to continue benefits. I was ready to go back to work. I couldn't believe it. I was taken five different kinds of medication a day just to function and after only 10 mins. of examination and refusal to see the evidence uncovered by 9 specialists I was OK. Immediately I returned the appropriate forms to appeal this decision and within two weeks a hearing was scheduled in front of a judge. I requested that my benefits continue, even though it was possible that if the judge determined in favor of the state doctor's determination I would have to pay back whatever benefits I received during this time of appeal.

Once I received notification of the hearing date, October 12th, my girlfriend Laura began working hard to make copies of every scrap of paper connected to my disabilities. Of course, I confirmed first with the appeals court that such records would be admissible. They confirmed they were. In fact, they told me that I would need three copies. Believe me when I tell you that I have been nothing less than obsessive about keeping my records and having copies to present to anyone who might need them to verify my disabilities. Once completed, the stacks of records were huge!

On October 12th I went before the judge. Not only was Laura with me, but my friends David and Haylee were also present to give moral support and to give testimony if necessary to support my claim. However, when we were called in before the judge the cold hard truth of disability rights in not only this state but in the whole of this country hit all of us like a ton of bricks.

The judge assigned to review my claim was nothing less than cold and antagonistic. It was clear to all of us that she wanted nothing to do with my claim and completely unprepared to deal with the ammunition I presented before her. When she saw my stacks of medical records and the pill bottles I laid before her she look stunned. Laura and Haylee told me later that they noticed the judge looked at the number of bottles several times during the hearing. The judge stated that she wanted only information for the past year, disregarding a lifetime of evidence. Next, the judge asked Laura, David and Haylee to identify themselves. When they did the judge stated quite clearly that she would not accept any "lay" testimony, immediately nullifying any influence by those who on a daily basis witness my suffering. I was now left alone to fight for my claim.

But before I could even begin to state my case, the judge determined that she would have to schedule a second hearing as she had neither previously reviewed any of the records in my files and she would have to review the evidence I was now presenting to her which was not previously included in my file. My interaction with the judge was contentious at best, and I worked hard to keep my cool as she continued to dismiss anything I wanted to present to help my claim. Afterwards, my friends commented that they thought I had maintained my cool extremely well considering, and that had they been in the same position none of them would have kept as level a head.

What was most shocking was when the judge told me that the state doctor who had examined me noted in his report that he was not offered any previous medical records or test results to review. I was blown away by this, I told the judge that I had offered both records and tests results while I was sitting in front of him. What the hell?! Can you believe it? The state doctor flat out lied! It confirmed my worst fears not only about doctors but that this state doctor was being paid by the state to block my rights! I was stunned! Later, after I got home, I was fuming! To be fair, the judge was also stunned when I made it clear to her that the state doctor was lying. She asked me if I would testify, under oath, that I had offered records and test results to the doctor and he refused. I said, "Yes, your honor!"

Finally, the judge told me to explain to her exactly what my problems were and why I could no longer work as the information I gave her was more than she could understand. Apparently, this judge had no way of interpreting what my medical records said. In other words, a judge whose whole job is to determine if a disability claim is valid has no background whatsoever to determine what is a disability. When I began to explain to her my conditions and the resulting complications, she stopped me and said that she needed for just one doctor, my primary physician, to write a brief no longer than 3 pages telling her in the most simplistic terms possible why I couldn't have a "regular and customary" job. I told her I would get it, but I also asked her why I was requested by the state to provide medical records if they weren't going to be reviewed. She flat out told me that she didn't know, because medical records are never reviewed by the state.

OK, this was the second bomb...I said, "Your honor, you're telling me that state neither reviews nor takes into consideration medical evidence of disability?" She said that the only evidence the state accepts is what their paid doctor says. I was thinking, holy shit! This bastard had lied about being offered my medical records and test results, so what else had he lied about? And this was the only evidence the state was taking into account? My God...I was screwed.

After the hearing, my head was swimming. It was a nightmare scenario. Not only was I having to defend and prove a lifetime of disabilities that were now preventing me from functioning in a way that the state defines as "regular and customary," but a state paid doctor was lying to the state in order to keep me from the benefits to which I had a legal right! More than this, though, was the thought of what other disabled people go through. I had always been prejudice against the state and the medical industry in its efforts to keep the individual from their rights, but now not only had I proof, I was living the nightmare!

Again, to be fair, I know that more people take advantage and screw with the system to get benefits they don't deserve. I'm not naive about that, OK? But what is a person to do who genuinely has a right to benefits when the state is actively working to prevent them?

I wish I could tell you what the result is of this ongoing fight; however, I won't know until my next hearing scheduled for November 30th, so stay tuned. I will be meeting with my primary physician on November 15th to ask her to write up this 3 page brief to the judge. I can only hope and pray at this point that my primary will agree to do this. I don't know what to expect. Shit, I had just gotten over my aversion to help from doctors and now I'm back to square one.

When I told my shrink about all of this she was also stunned. She assured me that if necessary she would testify to my providing this state paid doctor with an opportunity to review my records. That meant so much, but, to be honest, I don't know as it will mean shit in the wake of what is clear a court of injustice designed to do nothing less than prevent the rights of the citizens whose tax dollars pay their fucking bills.

So, what's the lesson, children? Don't trust the state...ever. Understand, they will not review evidence that supports your claim. They will pay doctors who lie, who disregard the Hippocratic oath. Regardless, you must, and I can't stress this enough, get and keep every scrap of evidence to support your claim. And fight! Fight! Fight! Don't let them steamroll you! It might not be a fight you can win in the courts...for me that has yet to be determined, but if the fight can be dragged into the public arena and into the media then do it! I swear to you, I will! I'm going to make sure the public is made aware of this court of injustice in the hope that others won't be subjected to this kind of humiliation and blatant disregard in the future.

Urgent! Make It Fast, Make It Urgent! Urgent!

I had truly hoped I could get away without quoting Foreigner in a title...but, well, a child of the 70's and 80's...you know!

I've been asked a lot lately how long have I got before the degenerative condition of my spine and the neuropathy I live with will get to the point where I can no longer function. The answer from my doctors is, no way to know. The pathology of all my degenerative bone conditions have been to progress quickly. That's relative, of course, and I really can't know an exact date. What I do know is that I'm working with a limited amount of time. To achieve what I want to achieve, to be physically active as a filmmaker, I have to do it now.

I was a procrastinator as a kid, teenager and for most of my adult life. In my efforts to keep my disabilities hidden, I had to stay "below the radar." Conspicuousness is the enemy of anonymity...and I wanted to be anonymous. Contrary to this behavior, however, was a desire to want to make something out of all the crap I was battling and over which I ultimately had no control. There were periods when I found myself involved in activities which brought me close to a larger kind of public recognition, but inevitably I would back down and disappear.

When the chronic pain and the diagnoses from the specialists finally burrowed their way through my thick skull, I realized that my attempts to avoid revelation were now completely compromised by a need to justify the fact that my body was completely out of whack and the results were inevitable. This was the death of procrastination. I was infused with a desire and hope to accomplish goals in a time as speedy as possible. And without any wish to sound grandiose, I realized that I could accomplish anything and everything I wanted in as short a time and with the biggest bang as possible.

I really don't like the idea of "being an example" because it presumes that the person who is "the example" somehow is meant to stand-out or meant to exemplify an ideal. As an idealist I don't believe that any one individual can ever be bigger than the ideal for which they work to achieve. Having said that, it's inevitable that people will see people as embodiments of ideals and ultimately look towards them to represent that ideal. Therefore, if a person is going to go out there and fight for an ideal or goal, they had better be prepared to live up to it and be an example, accept the reality that they will be scrutinized. That means, be what you believe and more importantly help others like yourself not to make the same mistakes you made.

What this means for me is that I hope if any disabled person learns anything from my opening up about my experience with disability is don't wait until the clock is ticking down in the 11th hour to get done what they want to get done. Seriously, do it while you still can! Don't procrastinate!

Facing The Problem Is Appreciated

For me personally, I appreciate nothing more than when someone I love gifts me something that directly references my being disabled. Sound odd? Perhaps, when you consider that I spent almost 30 years hiding my problems, and political correctness seems to insist that society not even acknowledge a person's disability as if that's somehow going to make a disabled person not feel so...disabled.

I remember when a friend of mine, on the day I was going in for my hip replacement, brought me a little present. It was a key chain with a fake hip joint attached. It made me laugh my ass off. I loved it. She was the only friend who truly appreciated my dark sense of humor.

Last night, Laura gave me a very special night before my birthday present. It wasn't expensive, at all. She gave me the following bumper sticker:


It almost made me cry. And it was as much because this bumper sticker was true as because Laura had given me something that had shown me what I already knew about her, that my wonderful, beautiful girlfriend was fully supportive of the path I was walking.

And there is no doubt that the best birthday present we can have is the support and love of those who chose to live with our suffering.

Appearances Are Deceiving

The assumption is that when you are disabled, even living with a hidden disability, that you are more vulnerable than someone who is able-bodied. When someone meets someone who is disabled they are likely to be cautious, even nervous around them for fear of offending or even physically hurting them. To believe the disabled are more vulnerable is one of the great lies about having a disability.

The disabled are by necessity able to survive and withstand conditions the able-bodied need never cope with. Emotionally, psychologically, even physically, the disabled have developed a strength that belies what society sees as their weakness. Certainly this has been the case for me. In fact, because I kept my physical vulnerabilities and limitations hidden for almost 30 years, I created an "aura" if you will and kind of vibe that others read to mean, "back off" or "I don't need anyone else." As a result, for good and bad reasons, it has had a large effect on how people perceived me, especially when first meeting me.

A few years ago, I shaved my head. For most of my adult life I have had a rather copious amount of hair. Albeit a receding hairline and bald patch might say otherwise, I was always complemented on my blonde hair. However, I decided that with the choice to become open and public about my being disabled, I shaved my head. It was a kind of Buddhist way of saying to both myself and the world, "Hey, here I am...naked!" But in conjunction with the massive weight loss and the "back off" aura I had developed since childhood, most people who met me, even my own boss at the time, told me that I looked down-right mean!

In other words, the last thing anyone perceived me as was vulnerable or weak. I guess it attests to the power of mind to create protection when needed. Sense of humor and intelligence are also systems that are developed to compensate for physical limitation. I certainly know that I have a dry and dark sense of humor. The disabled certainly need to be able to laugh at their own circumstance, and I think that the able-bodied should be encouraged to laugh along with them.

A good friend of mine was telling me that he became friends with someone suffering from psoriatic arthritis. At first my friend wasn't sure how to address it or continue to ignore it. Finally, he decided to just cut loose with, "Hey, would mind not flaking all over my couch?" This person with psoriasis broke up laughing and they've been really good friends even since. In my own experience, I never had more fun with my having to walk with a cane then when a friend of mine said, "Dude, you are pimpin' with that cane! We need to get you a pimp hat, some hos...!" I loved it! In fact, I included a variation of that line in the script for "Art Imitating Life."

"Never judge a book by it's cover," is one of the oldest cliches in the book, no pun intended. But as I've discovered, recently, cliches are cliches because they are, at least 90% of the time, true.

"Art Imitating Life"

As I mentioned in my earlier post "The Heart of Darkness," shortly after I began seeing the pain management psychiatrist and specialist, things started to take a sharp upswing. That upswing was my feature film project, "Art Imitating Life."

If you're familiar with my film company Brickyard Hill Productions' website, you'll likely be familiar with "Art Imitating Life." It's a project I've been working to get made for almost two years. Now, we are slated to start shooting the film beginning July 10, 2006.

The story of "Art Imitating Life" is fictional, but it is inspired by my own experiences with disability and chronic pain. It didn't necessarily start out that way, but as is the case with all the material I've written, the piece took on a life of its own. As much as I am the author of any written material, I eventually become no more than the scribe to the characters and events in any given story. The story and characters tell me where to go with them.

About year into writing the draft of the script, the lead character "Art Hackett" took not an entirely sharp turn but one that resulted in his being as physically and mentally crippled and scarred as I have been and still am. Like myself he appears dangerous, aloof, even compelling to those who once they are drawn into his life find that something dark and torrential rages below the surface of someone who seems strong and independent. I don't say these things to suggest either "Art" nor myself are to be admired. Instead, I believe all the qualities about myself which are best are derived by a simple need to survive. The illusion one must create in order to keep the world from knowing you are forever agonizing can lead to disastrous results.

Such is the case when Art meets "Callie Kalasky" and a strange love affair ensues. All of the romantic drama is set against an ongoing family struggle between Art, his younger brother "Adam" and their older sister "Whitney." As a result, "Art Imitating Life" is not just the story of how Art battles with chronic pain but how those who love and live with Art battle against the invisible enemy.

Once I came to the conclusion to take Art in the direction of my own experience, I discovered through research that never before had any film on this scale been told about the cruel reality of chronic pain let alone that it had been directed by a filmmaker who suffered with the same conditions as the lead character. It had become a groundbreaking project...and not by design.

It took me sometime to come to the conclusion that after hiding my own struggle for more than 30 years I needed to go as public about my experiences as possible. For me that is best served through the entertaining medium of film. However, it is also my goal to talk more specifically about what I have experienced, and not just through fiction. Deciding to "come clean" or "out of the closet" as it were about my life with disability has resulted in find a most remarkable and passionate team of experienced producers who have whole-heartedly embraced the message of "Art Imitating Life." They are dedicated to bringing my vision to the scream and to get me out into the public eye to help others who, like myself, fight the invisible enemy.

The greatest challenge for any truly independent, groundbreaking film, is raising the financing. One the one hand there is the argument that any film must follow the formulas that have come before, modeled on successful films of the past. That's why most indie filmmakers start out with either comedies, horror films or geared toward one kind of demographic specific audience. "Art Imitating Life" is none of these. It has comedy, family drama, elements of a thriller and will cut across demographic lines since chronic pain is not specific to any one disability, age group, ethnicity, economic class...it doesn't care who you are or how much money you have...and anyone can become the victim of chronic pain.

Fortunately, investing in a groundbreaking film offers someone the opportunity to part of a project that is bound to make a splash. The marketing potential of "Art Imitating Life" is limitless. Its message is universal. Its appear will be wide ranging.

We are in talks with top level talent, all of whom have been touched by either chronic pain or disability. We already have one A-level talent attached, and the actor playing Art is an award-winning comic veteran of Second City out of Chicago.

The response has been overwhelming, and I find myself embarrassed at times by the complements on the script and the goal of this project. I only say embarrassed because it's not easy when you have had to hide who and what you are for so long to hear praise for going public. I had been afraid for so many years that if anyone found out how truly screwed up I was physically and psychically by my disability and pain that I'd be accused of hiding or even lying! It's ridiculous, I know, but we don't live in a society that believes anyone who isn't "functional" be definition of the corporate model isn't worth the society's help or assistance. I truly believe "Art Imitating Life" will change this opinion.

Therefore, I would like to put out a public plea, here, in this blog to have anyone who suffers from chronic pain or suffers along side someone with chronic pain to reach out and communicate with me and one another, here, in this forum. I want both the investors in this film, the investors still to be found and the distributor of this film to know just how important it is to give voice to the tens of millions of Americans who, before now, have never had a voice in the mass media.

The producers and I are currently securing financing with investors who are interested in funding this film. Also, we have become discussions with potential distributors. However, we are open to any assistance that may yet be out there to getting this film completed and into any and all regular indie and disability related film festivals. We have brought a publicist on board who is preparing a media blitz on the movie and getting me out there to tell my story. I will make every effort to keep all of you posted, through this blog and on the Brickyard Hill website about any and all appearances and articles as they are released. I will also be posting project updates on the "Art Imitating Life" page of the company website.

Please contact me through my company email: matthew@brickyardhill.org with any suggestions, ideas, feedback, etc., regarding chronic pain or those who believe in supporting a feature film as important as "Art Imitating Life."

Chronic Humiliation

Nothing is more humiliating that living in chronic pain and having to beg for help. Like Oliver Twist holding his bowl up..."Please, sir, may I have another, sir," millions of Americans go undermedicated because our healthcare industry doesn't give credence to what it can't see, diagnose or feel. It sucks!

Nothing is more humiliating than when a chronic pain suffer has to beg their doctor to give them the medication they need to even have a semblance of a comfortable life. It is one of the reasons why 50% of all chronic pain sufferers contemplate suicide. Depression as well as the physical agony of pain can lead to the complete annihilation of whatever quality of life is left, as well as affect the lives of those who love and support chronic pain sufferers. This is a situation which is totally avoidable.

I have learned that it's not the specific disabilities from which I suffer that are what make my life at times unbearable but the constant pain in which I live. In particular, the neuropathy or neuritis which causes the chronic pain in my feet and legs doesn't appear to be related to any existing disability or condition according to the doctors. And because the EEG I took almost a year ago now showed no significant signs of nerve damage, I was being led to believe by my doctors that it was all in my head. There was no doubt that pain was being caused by my spinal defects, but there simply wasn't enough empirical evidence for the constant burning of my feet. It made me wonder how many other chronic pain sufferers lived in the same darkness I was.

What doesn't make any sense to me is that doctors fear that their patients will become "addicted" to narcotics or opiates if they take them to relieve pain. There is no doubt that more than too many patients are given medications they don't need to relieve temporary pain and that their given these drugs like candy. This will result in addiction. But when someone who is constantly besieged with pain isn't given enough medication, then clearly a greater crime has been committed. When your body is in constant pain, there's so much shit coursing through their body, they can't become addicted to anything else...and that's a fact!

When in the name of God is the healthcare industry in this neo-con/corporate controlled country going to start pain attention to the degeneration and suffering of it's population? When in the name of compassion is this country going to stop looking at chronic pain as a "weakness" and recognize it for what it is: a genuine disability. According to the American Pain Foundation some 75 million Americans suffer with acute or chronic pain...how many more are going to have to suffer before something is done to finally give this disability the attention it deserves?

The Heart of Darkness

Apologies for being so long in blogging. The bottom line is that I hit bottom...emotionally...depression set in like a stone. You can be in a depression for weeks, months, years even and have no clue that you're sliding down the slope. But that's what happened to me.

About a week after my last entry, I woke up at 2:30 in the morning, my right foot burning with pain, unbearable pain. I stood and limped to the recliner in my bedroom and sat in the dark of looking at my beautiful girlfriend sleeping. At that moment, as if a switch had been flipped in my head, I saw myself sawing off my own foot! It was not good, folks. It scared the shit out of me. I started shaking, because, for the first time in years, I decided the only way out of my chronic pain was to either cut off my own feet or kill myself. That's when the plan to kill myself came to me in full form. I would do it on the night my girlfriend Laura's son was with his dad and Laura was still at work. Remember, this wasn't a conscious construction of my own suicide. It just rose up from my mind full formed.

Fortunately, I had only a few days before finally broken down and made an appointment to see a psychiatrist who specialized in pain management. I had figured out that the pain which had been steadily increasing over the last couple of years was now out of my control. The fact that the seven specialists I had seen before then weren't able to help me figure out how to solve my problem or weren't willing to give me the medication I needed to help manage my pain had only sent me deeper into a depression that was now totally taking me over.

A week later I visited the psychiatrist who was the first doctor truly sympathetic to my situation. She prescribed Lexapro for me, which has helped enormously both pain wise and emotionally, quinine sulfate for my nighttime leg cramps and Licodaine patches for my lumbar spine. But still the neuropathic pain burned in my feet and legs. I finally broke down and at the behest of my psychiatrist, mother and girlfriend went back to the office of my primary physician, who, fortunately, was out of town at some conference, to get a refill of the only medicine that had worked thus far for my neuropathic pain: Hydrocodone aka Vicodin.

The doctor filling in for my asshole of a primary doctor was much cooler and not only appreciated my need for the controversial narcotic but gave me a recommendation to see a pain management specialist. A month later I was sitting in the examination room of the kindest physician I had ever seen. Like some kind of dream, he not only provided me with the Hydrocodone I needed to be comfortable but determined, as had my psychiatrist, that I had been undermedicated not only by primary but by myself for years! He said that I had to approach my pain management like a diabetic approaches taken their insulin...on a regular schedule. No matter how good or bad I feel on any given day, I will take one pill in the morning, one in the afternoon and one at night...and, here comes the worst part, it would be a part of my daily regimen for the rest of my life...

I was relieved that finally I had found a doctor who recognized my need for pain relief was greater than some asshole doctor's fear of my become a wild Hydrocodone addict. In fact, he told me that if I found myself increasing the amount of medicine I was taking, to let him know and he would supervise my increase. He didn't tell me not to, because he recognized my disabling conditions were unlikely to ever get better. In fact, he told me in no uncertain terms that in a year or so I would probably need to go to a more powerful drug as my condition worsened.

Don't get my wrong, I was devastated to hear from yet another doctor that it was unlikely that any surgical procedure could remedy my problems and that in as short as 10 or 15 years I could be really messed up beyond functionalism of any kind, but the fact that my own internal instincts and despair over my conditions was rooted in something factual, medical, reality. I wasn't going crazy, anymore; I had been in tune with the decay of my own body.

Believe it or not this help to lift the depression. And that's when things really started turning around, my friends. The darkness had descended quicker than I could have ever imagined, but just as quickly it began to lift. But more on that later...

Timing Is Everything

Yesterday morning, one of my business partners with whom I've been working for more than 10 years to get our indie film company up and going has told me they are leaving the company, if not the whole entertainment industry. So, now I have to sit down with my other partner and decide whether we continue forward as we have or take another direction with the company.

In light of my coming to terms with my disabilities and my fight for benefits, this couldn't have come at worst time. I'm not going to rail against this ex-partner for their choice of timing nor will I get into here the details of the situation me and my other partner are now in as this ex-partner departs the company. However, if timing is everything, then everything sucks.

To be honest, I think after 10 years of trying to start up a film company you have every right to quit. Most folks don't even last a year in an endeavor without an immediate return, let alone a decade. So, I have to give my former partner credit there. But what amazes me more is that I haven't given up on my ambition and goals as a filmmaker and writer. Afterall, I have had some personal success in both arenas, although nothing anyone in the larger public would consider a windfall.

What occurs to me, though, is that my having to battle with my disabilities, overcome them and constantly battle each and everyday to cope has given me a natural determination - an almost instinctive will - to not give up when encountering adversity or "failure." That's not to say I haven't thought a million times or more about just throwing in the towel, and I have definitely taken mental vacations from the struggle. However, I always return to the battle and count each and every success, no matter how minor, one step closer to the ultimate goal...whatever that goal might be.

For all the negative side effects disability brings us, it also embues us with the capacity to withstand even the greatest of challenges. If I have gotten this far and achieved what I have achieved then no one else's choice, no matter how adversely it affects my goals, will stop me from continue my pursuit. This is not to say the disabled person can win every battle - no way! In fact, it's more important for anyone confronting adversity whether physical, mental or emotional to pick and choose their battles, because many battles will be lost. But what I learned yesterday was that for myself, the harder the adversity, the greater the challenge, the more success I discover when I reach the end of my goal.

And as I've learned through my studies of Buddhism, those who and that which hurts us teach us the most valuable lessons.

Finding Your Voice

Nothing is harder for an artist than when they discover "their voice." One of two things will happen: either people will love what the artist has to say and how they are saying it; or they will fear, even hate it.

Regardless of what you might have been taught in school about America standing for the individual's pursuit of their dream, American culture and the powers-that-be would rather you just shut the hell up and stand on line...be a drone. When was the last time you heard any politician or social leader on TV actually say, "Yes, we want you to do whatever you really want to do. Go out there, be your own person!" It's more likely you'll here, "Don't rock the boat." I'm not saying their aren't politicians and social leaders who aren't saying "Be your own person! Make your own personal statement!" I'm only saying you don't see them on CNN and certainly not on FOX News. If you do happen to see one, well, it's not going to be a very favorable report.

It's very discouraging for any artist who discovers their path to have road bumps or even detour signs appear along that pathway. No one can withstand pressure for long. It's why most artists become fall back on graphic design or some other can out of outlet for their creativity which can best serve corporate America.

In my experience, the only way to have your voice protected against obstacles is, and I know it sounds a little corny, honesty...to one's self. There is nothing else that can better protect the artist's unique voice than to simply put themselves out there with full disclosure. The truth is that commitment to one's art or one's voice is not enough, an artist needs conviction. In other words, you need to be so sworn to have your voice heard that you are indistinguishable from the message. You have to be prepared to take blows and be wounded in any fight...and putting a vision out there, speaking with a voice never before heard will result in fights.

I'd like to say it's easy, but it's not. It's taken me more than 10 years to have my particular voice finally find people who jive with it. But you have to keep at it! Finding your voice will be a mixed bag at best, and every artist will have bouts of laryngitis over the course of their work. But you have to keep at it. The only way to change the status quo is to not buy into it. It's as simple as that.

Degeneration X

It stuns me how inane and stupid most of my generation really appears to be. I can see why someone like George W. Bush and the Religious Right can so easily seize control of the country when my own generation, which thrives off MTV and video games, has become desensitized to the reality of war, poverty, sickness and famine. Their addled minds have become manipulated, and they simply don't give a shit what happens to anyone other then themselves.

I suppose it would be easier if I wrote in a series of sound-bites and incomplete thoughts like:

See and feel their repression.
See and feel their fear.
See and feel their hatred.
See and feel their deniability.

Or maybe something more personal like:

I know pain.
I know suffering.
I know insomnia.
I know depression.

Hmm, sounds like poetry, doesn't it? Of course, none of it really matters. It doesn't matter how much or how little I write to express my thoughts. I am expressing them and that's all that matters. Expression of our individual selves is what my generation needs to do more often. How each individual does it is just a matter of style and technique.

The one thing I have always recognized as a writer is that when I get negative feedback, the reader has still read it. As long as someone doesn't show enough intelligence to actually tell me why I should stop writing, or what it is in what I wrote with which they disagree, then I have to believe my writing affected them in some way. At the end of the day any writer will tell you, "I don't care if the reader likes or dislikes what I've written, the fact is they read it and were affected by it!"

I have written and will continue to write controversial stories that most people will likely have to seriously think about before they understand them, but they will make them think. Similarly, when I write something like this blog or tell my own story they will think me wordy, didactic and too opinionated. Good, because most of my Generation X have let their intelligence and free will degenerate through a manipulation of pop culture and mass media by narrow-minded, corporatist and greedy old white men who have seized control of a nation that once gave a damn about individualism and free speech.

As much as I hate and resent the fact that my body is degenerating and that decay can't be stopped no matter how much medicine I take or how many operations I undergo, at least my mind hasn't.

I spent almost 30 years keeping my mouth shut about my disabilities and life with chronic pain. I'm not about to listen to any dipshit who doesn't have enough balls to actually tell me what is about my writing or telling my story that's a lie or not good enough to write, read or be seen. So readers, get ready, because I haven't even gotten started. Bring the feedback on! Negative or positive, I live for the debate! And if you haven't let your mind be degenerated you'll welcome the debate too.

Deniability Factor

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.

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.

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.