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.