FLUKE O' NATURE

I Am Not Ashamed...I Will Continue...

2008-05-13T00:48:00.000-07:00

Do I have a chip on my shoulder? What do you think? I live with neurological and arthritic pain 24/7. I’m taking seven different types of medication each day—between 11 and 15 doses—depending on how bad my pain is on any given day. So, do I have a chip on my shoulder? Yeah, I do!

Several parties have been slamming me for writing this blog and for going public with my life with disability. In the last six months I have been verbally threatened and received written threats for taking the positions presented in this blog. How concerned am I for my own safety and the safety of my family? It’s taken me almost six months to decide if I would continue this blog or give it up, as well as any future writings. But I am not going to be ashamed of being disabled and medically deformed. My family that has stood by my side and my right to free expression hates it when I use that term “medically deformed.” Fair enough. I’m not Quasimodo, but the surgeons have used exactly that term to describe my bone condition. Neither will I be ashamed of my suffering. My suffering is a source of strength and inspiration in my pursuits and success. I recognize that many people I know have labeled me reprobate and anathema for my embracing my disabilities, deformity and suffering. Nothing is more disturbing to the status quo than when a human being recognizes that embracing weakness, negativity and vulnerability is vital to one’s self-actualization. Once embraced and harnessed these “lower” aspects of the human experience can be considerable sources of power and can no longer be exploited by other ego-centric persons.

In terms of my Lutheran/Christian upbringing I recognize my disabilities, deformity and suffering as physical manifestations of God’s grace. My childhood pastor sat in the hospital by my bedside and told me tale after tale of how the prophets and those chosen by God were either pariahs of society, criminals or physically damaged. God chose these “flawed” humans as his vehicles because they more than any other could recognize the weaknesses of others and have compassion for them. Physical suffering and the reflection upon it is essential to being a good Christian. When a person suffers, whether physical, emotional or psychological it strips down ego and forces a person to look upon the suffering of others and empathize. And if we know suffering, we will never seek to make others suffer.

In terms of my Buddhist studies, my disabilities and my suffering with them is my dharma…my great teachers. These qualities open my eyes to the suffering of my fellow humans and keep me walking the middle path of compassion. I am challenged not to judge those who suffer regardless of their race, religion or nationality. If I step off that path and judge others or wallow in my own suffering too long, the karma manifested as my chronic pain slaps me back in line. If I can become detached from my own suffering and view it as neither good nor bad as simply a tool through which I can better understand the overall human condition I can not only learn to rise above my own suffering and hopefully educate others who also suffer. Suffering is power…a pathway to enlightenment.

Regardless of these analogies, I have been called a Satanist, charlatan, failed artist and martyr, to name just a few. Fortunately I have been compulsive in collecting the documents proving my medical, psychological and spiritual affectations and experiences. The more I am challenged and assuaged for sharing my story the more confirmation is given to me to fight on and tell my story.

In the simplest of terms, I have been dealt a difficult hand whether by a god or by a genetic fluke. I am making the best of that difficult situation. If that leads others to rebuke and resent my efforts so be it. I won’t apologize for being born this way. It took me many years to stop blaming my parents, God and the medical profession for conditions which none of them were responsible. I have made amends for these past relationships and am moving forward. My only concern now is securing and protecting my family and embracing what was once a source of shame and turning it into a wellspring of inspiration.

As I meditated over the last several months, asking for guidance as to what direction to go, I have been blessed by the reappearance and support of two long lost friends for my efforts. Additionally, I have had the unwavering support and unconditional love of my fiancée and mother, the confirmation of friends and colleagues close to me here as well as across the country, and the emails and comments made by folks I have never even met, all of whom have lifted me up and kicked me back onto the path of sharing what is my unique experience. I will not dishonor or disavow their faith and support by walking away from this path. Even though my neurological condition is beginning to affect my fingers and hands and my capability to write on this laptop slows down I will continue to communicate as much as I can even if the entries and chapters come less frequently.

Thanks.

Thank You For Lettin' Me Be Myself

2007-12-14T14:46:00.000-08:00

In my last entry I commented that there were those not so understanding of what I have gone through. I also said there were others who had remained true friends and stalwart, supporting my position and right to admit my disabilities and fight for my rights. It is not my position to post their full names and bring attention to them. But I would like to list their first names.

I want to thank Laura, and Nancy, Charles & Chris, Haylee, David, Gav & Steph, Patricia, Amy, Julie, the cast & crew of "Art Imitating Life", Paul, Missy, Mike, Teri, Harley and the rest of Laura's family who have been in the physical absence of my own family as genuinely loving as if I shared blood with them. I would like to give a special thank you to Laura's younger brother Brian, who earlier this year at the age of 30, lost his life to cancer. He and I shared many conversations about living with pain. Brian lifted my heart and made me realize there are angels on Earth. Bri, you will be missed.

There are many others who have come in and out along the way who have through the many levels of my battle believed in and supported my efforts to have this ordeal make a difference. They know who they are and I love them for it. There are also the medical professionals who have listened to me and understood the unique nature of my conditions and helped me find treatment and the road to recovery. Among these I especially thank Dr. Coffman, Dr. Lupo and Dr. Kattih. It is only after I began working with these three specialists that I could once again believe that the health care system isn't entirely controlled by statistics and money.

Finally, I have to say so many thanks to you readers who have followed this blog, and I hope will continue, and have gotten from my writings what I intended.

A happy, healthy and joyous holiday season to all of you!

"Fully Favorable"

2007-12-05T10:33:00.000-08:00

The last near-two months have been difficult for many reasons. While our presidential administration tries to push us ever-closer to a full blown invasion of Iran and our sisters, brothers, sons and daughters, friends and civilian innocents continue to die by the hundreds and thousands because of this administration's soulless ambitions, severe depression has managed to creep its way back into the mix of my struggle with disability. When you suffer with depression it is almost impossible to separate one's own personal struggle from the struggle of all those around you. It is like the wall between you and them and collapses and any negative input immediately adds to one's personal agony. The depression has returned because I ran out of my anti-depressant, which also helps control my nerve pain. Additionally, I have run out of two other medications which are essential to my pain management. As a result, my pain has increased and my insomnia has gotten worse. This is why I have had a difficult time writing for this blog. The pain, emotional and physical, makes focus impossible.

This is what has happened because I have been waiting since October 10 for the written notice of the judge's decision following my disability benefits hearing. Yesterday I finally received the judge's decision and thankfully it read "Fully Favorable," which means his decision to grant me benefits is now official and fully legal. The immediate glee and high gotten from the original hearing has faded but the emotion has not. I physically shook and cried as I read the twelve-page Notice. Some of the language was confusing but most was understandable. I might have a background in intellectual property and contract law, but disability law is a different beast using a different language. I put a call into my attorney Alex Boudov and hope to hear back from him soon so I can know exactly how I can use this document to get my benefits rolling.

The benefits are essential in my re-obtaining the medication necessary to get back on an even keel. I was able to keep my cobra insurance for as long as possible, and also able to rely on certain family members for as long as they wanted to help me. But over the last three week I have had to manage to keep my attitude above the water line of "easy escape." My depression, when out of control, tempts me with thoughts of suicide as an escape from my pain and release for those who love me. I recognize that this kind of thinking is total bullshit, but that does not stop the depression any more than I can switch off the nerve, bone and muscular pain. Now that I have the judge's decision in hand and I know the gears within the system are turning, I know, for a fact, I will be receiving my medication, again, and I will once again be able to see my doctors on a schedule.

Rock philosopher Tom Petty once sang "The waiting is the hardest part," which is a mantra I have used previously in this blog. Never has that mantra meant more than over the last seven weeks. It is what every truly disabled person must endure and will be the one thing that is the hardest to endure. When there is nothing you can do, and you are having to trust other people who can not know what you are suffering through, it adds so much stress that whatever suffering you normally endure is exasperated to the point of absolute agony. It is enough to make one believe that only a bullet through the brain or a handful of pills seem the only reasonable option. When you add to this the stress of those friends and especially family members who simply can not appreciate, empathize and give assistance during this critical period there is no guarantee a disabled person will survive "the waiting."

I can only say that I have been incredibly blessed to have a fiancee and a mother both of whom have endured the waiting with me and kept me from succumbing to the darkness. My relationship with both my father and brother, as well as several other friends has fractured to a point where I am not sure I even want to repair them. I have had the support of a few friends, less than a handful, who have reached out and understand that during such a time I am not going to be able to reach out easily and ask for help. If "pride cometh before the fall" than this is the perfect example of that platitude. The last thing a disabled person who has been humiliated over and over again throughout the fight for their rights needs is one person telling them "It's up to you whether or not you want my help." Damn, is this what family and friends are for? I refuse to accept that love means "conditional" love.

As my waiting period comes to an end, I will not forget those who have helped me and supported me and my family and I will forget those who did not and condemned me for being genetically inferior to them. But instead of allowing the pride that kept me from taking the easy way out to become a instrument of hatred and contempt against those family and friends who did not make an effort to empathize I will work to honor those who loved, supported and stood by me during this most difficult trial by continuing my fight for the rights of my disabled brothers and sisters and to get my story out to the public through book and film to give hope to my disabled brothers and sisters. And, hey, if there is a reward for all this struggling, then I want to share it with those who shared their love, instead of their judgment, with me.

Now that's what I call "fully favorable."

10.10.2007 - Judgment Day

2007-10-16T09:23:00.000-07:00

I filed my application for Social Security disability benefits in December 2005, beginning a struggle lasting 22 months, however I could not have been less prepared for what happened when I entered the hearing room last Wednesday, October 10 and sat before the judge for my disability review and adjudication. Feeling a combination of fear and isolation as I sat down at the table with a microphone in front of me, my attorney Alex Boudov seated to my right, to Alex’s right sat the stenographer, to her right sat the bailiff and seated before all of us behind his bench above us was the judge. This judge held the absolute power to grant or deny those benefits for which I had rightfully pursued since my combined disabilities had forced me to “retire” from any and all “normal” work I could ever do. Did I mention I was terrified? I used fear and isolation to describe my mental state, but upon reflection I think it’s better described as terror.

On Tuesday night, I broke down and cried. I had not heard from or spoken to my attorney so I had no clue about how my case would be argued. All I could do was grip the thick files containing my application and subsequent paperwork sent to Social Security and the medical documents collected by me dating back to my childhood Perthes condition. My poor fiancée Laura had to console me, which was a lot to ask of her considering my state and also because she was herself going through a flood of emotions about the hearing. Laura had stood by me, supported me, loved me and was actually the first person to battle with me over pursuing my benefits. Hell knows I didn’t want to go after them. I had lived in denial about my disabilities and had in fact taken jobs that I might have certainly been better off physically not ever working. So, this battle was as much Laura’s fight as mine.

My insomnia that keeps me up on an average until two or three in the morning coupled with my nervousness over the hearing kept me wide awake until I forced myself to lie down at 2:45 a.m. Laura was asleep but her warm body and our kitty Thea, who had leapt onto our bed and laid down on my chest, relaxed me enough to finally fall asleep. When I woke at 6 a.m. I began preparing for the hearing now three hours and forty-five minutes away. Laura took the day off to drive me and be with me for support. We arrived at the offices of adjudication and review at the required time of 9:15 a.m. It was in the lobby of the offices where I finally met my attorney Alex Boudov. He was professional in appearance and character. I was instantly put at ease. I sat down with Boudov in a conference room and he succinctly told me what to expect from the judge. His exact words were “He’s a no-nonsense judge. He determines many of his cases by ‘reading’ the applicants.” Well, this was something that both encouraged and terrified me. Historically when someone heard my story face-to-face it had a positive effect on whether they believe someone of my age could be so disabled. On the other hand, this fact put the onus on me to deliver the truth and believe that I could explain the complexity of my medical conditions in a coherent way.

In November 2006 I sat in front of a judge who reviewed my disability status for state benefits, and at that hearing I was able to have Laura and other friends present at the hearing. It was an enormous help having Laura actually there, literally holding my hand. No such luck at the Social Security hearing. My attorney had left us to attend another hearing and when he came back he asked me to follow him, that it was time for my hearing. Laura rose with me and then the attorney told both of us that Laura couldn’t go in, unless the judge wanted additional testimony. So, Laura gave me a kiss and I followed Boudov to the other side of the floor and entered the hearing room.

Once I sat, there was a period of silence which lasted I’m sure no longer than two minutes. Of course, to me it felt as if it were an hour or more. In that time, my mind ran through a list of facts, events and names of medications which might or might not be asked for by the judge. It was a jumble in my head and I couldn’t organize them no matter what. That’s the downsize of my having spent time over the last two years making copies of each and every slip of paper pertaining to my case and my medical records. Hole-punching and placing all that information into Pendaflex file folders allowed my mind to be at least partially free of having to keep it all in my consciousness. But now, without those files in front of me, copies of which were being held by my attorney and the judge, it was going to have to come entirely out of my own head. Could I remember it all?

The judge’s first spoken words were “The time is 9:55 a.m. on October 10th, 2007. Present are the claimant and his representative,” he then took roll call to which both my attorney and I said we were present. His first order to me was, “Please rise and say after me, ‘Do you swear under oath that the information you give will the truth and the whole truth so help you God?’” I stood with the help of my cane and responded, “I do.” To which he then said, “Please be seated.” Once the judge asked me my name he asked me when I last worked. I answered, “December 2, 2005.” He asked me why I quit at that time and I described how my disabilities were out of my control, that without the assistance of my doctors and their unwillingness to treat it I had become suicidal and unable to mentally and physically perform my duties.

The judge was more attentive than I could have hoped for. Not only was he but his staff present in the room also seemed to be focused on my story, which under the judge’s questions led to me telling my lifelong experience with my disabilities. I explained how my childhood condition affected me throughout my life and how I worked for decades not to reveal my condition and never asked for any kind of help or assistance. I said that it was my mother and Laura who pushed me to apply for disability benefits and that it was when I realized I would rather be dead than suffer the humiliation and resistance I was facing from my doctors I decided it was time to pursue my benefits.

The final question asked by the judge was if the medications I was on now were making me comfortable. I had to think a moment because, once again, I had to find a way to explain in a coherent way the level of discomfort and at times comfort I felt with the long list of combined medications: methodone, difcloneac, Lyrica, Cymbalta, ibuprofen, lidocaine patches and hydroxychloroquine. The best explanation I could give the judge was that on the pain level scale of 1 to 10, I average a level of 5 to 7 on a good day, bad days it is always a 10. I explained that if I took the amount of medication required to completely negate the pain, I was could be unconscious most of the day. I said that the only position I can spend most of the day in when I don’t feel any intense pain was reclining or lying. I added that sitting was just as painful after 10 minutes as was walking or standing, for which the time allowed before intense pain was now less than 5 minutes.

At this point, the judge sort of interrupted me, and said that based on the medical records which he had already reviewed and my testimony he determined I was incapable of working at the present time and therefore granted me full disability benefits.

Huh?

Based on the medical records which he had already reviewed and my testimony he determined I was incapable of working at the present time and therefore granted me full disability benefits.

No…no…I heard it when he said it! I was there! But writing it down for the first time affects me the same way I was affected when the judge first pronounced it. I AM STUNNED! My two year battle is over! Don’t get me wrong, I realize that once I receive the formal written letter from the judge, which includes according to my attorney a form to be filled out regarding my benefits and settlement, I will be facing a whole new period of challenges to make sure I get everything in a timely manner and that a struggle may ensue with bureaucracy in order to keep my benefits coming in a timely manner. Regardless of what lies ahead, I have won the recognition and benefits promised to me by an America which views my minority group as the least valued and least recognized members of society.

Bottom line: I WON!!!!

What shocked me most and brought tears to my eyes, which made me realize why there was a box of Kleenex next to the microphone in front of me, was that a determination was made by the judge right then and there. When I sat before the EDD adjudicator I didn’t receive a judgment. I had to wait until the formal letter arrived before I knew I had won that case. I was completely unprepared to receive the judgment at the hearing, and I’m sure that’s why I cried. I thanked the judge twice as I rose, he said I was welcomed and I walked to the door followed by my attorney. The attorney had not had to argue my case at all. I had done that completely on my own. By simply telling my story, the truth of my suffering and by appearing in person to show him how someone of my age could be so badly affected by chronic pain syndrome, I had supported the evidence in my records. More importantly for a judge whose reputation was one of “reading” the claimant, I had locked eyes with him, never wavered in the truth of my struggle and assured him I was not someone unlawfully seeking benefits.

As I left the hearing room, followed by my attorney who was chatting with the judge about how the rest of their day was free and clear following my hearing, I was shaking, unsteady, but impatient to tell Laura of the result. As I almost lost my way back to the lobby, thankfully I had my attorney there to get me in the right direction, I had no idea what words would come out of my mouth. When I walked up to Laura in the lobby I simply said, “I did it. I got it, baby.” I didn’t want to say it too loudly, didn’t want to attract attention. So, Laura wasn’t sure what I was saying at first because I didn’t explain it well. To her it sounded like I was simply saying “I got through the hearing. That’s over.” It wasn’t until I said “No, I won the decision, we’re getting the benefits,” that it hit her and she was as shocked as I. We both thanked Alex Boudov profusely and left the building in a daze.

Of course, a big part of me won’t completely believe it until I hold the formal letter in my hand. At that point I will probably completely freak out and cry like a baby and staple a copy of it to every piece of clothing I have as proof that I am who and what I am and that other disabled persons like me should fight tooth and nail for their rights, too! Until that day when I have the letter in my hand, I will just replay in my head over and over again what my lawyer said to Laura and me after the hearing. You see, without Laura having been in the hearing room, I can’t ask her to reassure me of the judge’s determination. But since she was there when the attorney told us what steps would follow to get the benefits moving, which would only be told to us because I won the decision, I can ask Laura, “Hey, Boudov said we won the decision, right? Right?” and she will say in a soft but confident voice, “Yes, we won.”

Writer's Block

2007-09-30T00:56:00.000-07:00

I'm sure my absence from this blog has caused the loss of more than a few regular readers. I'm sorry for that. The fact is that I've been overwhelmed throughout the year with so much that it's led to a conspicuous writer's block. For anyone who is a writer, this is a very real, very aggravating issue. For anyone who isn't, be thankful. I've been lucky over the course of my life to only have a handful of true writer's blocks, but when they hit they've been hard and lasted a while. They have also been tied directly to my dealing with my disabilities. This block has been no different, although other tragedies suffered by my family have also contributed.

I cannot begin to describe in detail everything that's happened to us since April of this year, but I will try over the next several entries to catch you up. What I can say is that between Laura's loss of her baby brother Brian to cancer and my upcoming hearing on October 10 before a judge to obtain my disability benefits I am amazed at how strong and how my family have all continued to function and succeed.

Believe me, if I had had any idea of what I was getting myself into when I began my fight for my rights, I might have thought twice or even completely abandoned my fight. But as stressful and exhausting as my fight is, I have no doubt that it is exactly what I should do. I also have no doubt that a system so burdened with bureaucracy and structured to dissuade and defeat the disabled in the search for rights, benefits and recognition must be confronted, battled and eventually changed in order to secure the health, security and future for our neglected community.

I will return ASAP to continue sharing with you my continuing struggle with chronic pain and disability as well as discussing what anyone with disabilities and chronic pain must know in order to protect themselves as well as secure their rights as a disabled citizen in this nation.

ART IMITATING LIFE The Trailer - Production Stills

2007-04-21T10:17:00.000-07:00

I hope everyone had a "relaxing" 4/20. Here are some stills shot during the shooting of the trailer of my fantastic cast and crew. Again, there is nothing I can say to fully express my appreciation to each and every one involved in getting this trailer completed, except "Thank you!" Artists of any kind, creative or technical, are the best of people and when they find a project they believe in the results can be truly wonderful. Enjoy...

Matt V V (writer/director) (left) & Haylee Twombly (producer)

Burt Gregory (sound) (left), Adam Tash (D.P.), Ric Borelli ("Art"), Juliana Dever ("Callie")

David Chung (assist. camera) (left), Adam, Matt & Ric

Juliana Dever ("Callie" & "Art's Muse")

Ric Borelli ("Art") (left) & Micaal Stevens ("Camel")

Ric (right) & "The Merry Mobsters": Jeff Torres (left), Micaal, Cooper Stevens & Marc De'Antone

Juliana Dever & Paul Kapellas ("Lenny")

Adam Tash (right) & Matt V V

ART IMITATING LIFE The Trailer is Online!

2007-04-20T14:26:00.000-07:00

In a year that has been a challenge for both Laura and I, we are so excited to announce the completion of the trailer for "Art Imitating Life!"

I can't begin to say thank you enough to those cast and crew members who on short notice gave so generously their time and talents to shoot this important tool to help us secure financing for the feature film.

My production partner Haylee Twombly has proven to be as much a friend as a business associate, and I love her so much for all the faith, hard work and vision towards bringing to life this story inspired by my lifelong struggle with disability and chronic pain.

The cast members who appear in the film are Ric Borelli ("Art"), Juliana Dever ("Callie"), Casey Irvine ("Adam"), Paul Kapellas ("Lenny") and Micaal Stevens ("Camel"). Micaal also collected three actors (Jeff Torres, Cooper Stevens, and Marc De'Antone) to show up and be our "mobsters." Ric and Juliana have been attached to this project longer than any other cast members. I can't imagine any one other than Ric and Juliana as my hero and heroine.

The crew members who helped us include Adam Tash (our D.P.), Burt Gregory (our sound guy) and David Chung (gaffer), as well as our newest team member, editor John Carrick, who we found through our Assoc. Prod. David Gold.

Haylee has posted the trailer (both the full and short versions) on our Brickyard Hill Channel on YouTube. I encourage all of you to check it out and let us know what you think. I love the feedback!

Haylee and I hope to hear in the next few weeks from the investors for whom we shot the short version of the trailer regarding the financing. So, keep your fingers crossed! I will also be posting some stills of the cast and crew shot during the production of the trailer.

Trouble Me

2007-04-01T19:07:00.000-07:00

The last couple of months have been a struggle between agony and achievement. Not an uncommon theme in my life. Beginning the middle of January the pain in my lower back and my feet become markedly worse. Waking up in the morning was agonizing at best. When I put my feet on the floor, walking, let alone standing, seemed impossible. My back was difficult to straighten out. The dosage of Vicodin and the Lidocaine patches were not giving any relief. So, I contacted my primary physician and requested referrals to see my pain management specialist and the neurosurgeon I had consulted in October of 2005.

Before I could see the neurosurgeon I would have to have X-rays and MRI's. I will be getting the MRI tomorrow, but I did get my X-rays, and the results weren't pretty. My spine in a period of 18 months, had slipped almost 50% farther than my previous MRI in September 2005. This could easily account for the greater amount of pain and the greater amount of weakness in my legs. The MRI will reveal more about the slippage and if there is indeed a greater amount of root compression on my spinal cord.

In the meantime, I was able to meet with my pain management specialist who has now added a new medication to my pain management regimen: 25mg Fentanyl Patch - i.e., a morphine patch. My willingness to take the morphine patch, which my primary physician had suggested to me late last year, was at the behest of both my girlfriend and mother both of whom are growing tired of my constant resistance to getting as much medication as possible to make me functional as possible.

Accepting the morphine patch was not easy for me. I just don't want to believe I am so far gone and my pain is so out of my control that I need a medication as intense as morphine. Even after 3 years of knowing that my life will always be one with chronic pain, I am still fighting the inevitability of my fate. On the lighter side, after almost 2 weeks with the Fentanyl patch, I have found greater relief and been able to sleep more than 5 hours a night. Not every night, but most are better. My dreams have been a lot more "technicolor," but my night sweats have increased, so have my day sweats come to think of it! I have moments of intense fatigue and lightheadedness but that's to be expected. I will adjust to the morphine as I did the Vicodine.

In my earliest entries in this blog, I posted some scans of my X-rays to show the physical evidence of my disabilities. I think the evidence can be extremely helpful in understanding exactly what persons like me live with. So, I have posted here an X-ray comparison between the first 1994 X-ray of my spine and the most recent which was taken almost three weeks ago.

I added the white marks to illustrate more clearly the increase of slippage over that same period of time. I wish I could say that my own denial and continued physical activity has increased the deterioration; however, over the last 18 months, in which the almost 50% increase in slippage has occurred, my physical activity has decreased significantly!

In truth, as much as the 25mg of morphine has helped since being added to my 20/2,000 mg of Vicodin a day, the Lidocaine patches, the Cymbalta and the Ibuprofin, it hasn't given total relief. My pain management specialist has asked me to contact him if I feel I need to try one of the higher dosages, but I want to give the 25 mg a decent amount of time, as well as my body time to adjust, before I take in even heavier opiates to achieve relief.

I will, as always, keep you posted. And you can bet it will not be another two months! I will be getting the MRI tomorrow and seeing the neurosurgeon I hope in the next few weeks. After those results, I will absolutely get back to you.

Hugh Laurie Is Twice Golden!

2007-01-24T13:23:00.000-08:00

Congratulations to Hugh Laurie for a second straight Golden Globe win as Best Actor for his portrayal of Dr. Gregory House on "House!"

Long before Laurie donned the constant three-day growth of facial hair and walked with a cane, I was a mad fan of "A Bit of Fry & Laurie" and the cult classic "Black Adder" series, both of which featured Hugh Laurie. So, when I found out that Hugh Laurie would be playing a character afflicted with a disability and chronic pain, I was overjoyed! (Does that sound strange to say?) I never doubted Laurie had the talent to deliver. What I could not have expected was how realistic and how personally I would identify with the struggles of Dr. House.

Although an Emmy has not been awarded to Laurie for his work, the fact that the Hollywood Foreign Press recognizes and knows Laurie from his previous work and rewards him accordingly is truly appreciated. As both a fan and as someone who walks with a cane and pops Vicodin (thankfully not to the extent of Dr. House!), I hope the show continues to get press and attention and ratings so that those not afflicted with chronic pain appreciate what a challenge it is.

If you don't watch it, watch it! And if you want to see Laurie work not to break your heart but to make you laugh until it hurts, check out the DVDs of his work with longtime colleague Stephen Fry in "A Bit of Fry & Laurie" and the "Jeeves and Wooster" series, as well as the third and fourth series of "Black Adder": "Blackadder the Third" and "Blackadder Goes Forth."

One Little Victory...A Bigger Battle Begins

2007-01-23T11:44:00.000-08:00

Happy New Year, everyone. Sorry for my conspicuous absence. It has been a trying time, but more on that later. I do have some good news to share, first:

After months of battling the State of California to prove my right to disability benefits a judge ruled in favor of my receiving all of my state disability benefits.
The judge wrote in her decision:

"In the present case, the claimant has a complicated medical history and continues to suffer significant amounts of pain. The opinion of his treating physician, who is far more familiar with his history than the independent medical examiner, has been given greater weight here. Consequently it is found that the claimant has not recovered sufficiently to return to his regular and customary work at the time of the independent medical examination. The determination made by the department will consequently be reversed."

I was able to receive this decision without the need for counsel, and that's important because too often the disabled are forced to pay large sums of money for representation. I'm not saying that counsel isn't required in certain circumstances and I'm not saying you shouldn't seek it if it can be afforded. However, I believe the key was having medical records which clearly illustrate my complex history. Knowing that someone of my age doesn't normally suffer from neuropathy, spinal degeneration and neurological and arthrtis chronic pain required my getting copies of every record I could and asking ever doctor I knew for evidence.

As happy as I was by this victory, I realized immediately that I was now going to have to fight the decision of Social Security to deny me benefits. I've entered the State Judge's decision as evidence. I believe it will prove to be the best weapon I have. As a general rule, Judges don't like to overturn each other's decisions.

It is the first time in over three years I have felt vindicated in my legal battle for my rights as some permanently disabled.

The Masochism of Meaning

2006-11-09T06:05:00.000-08:00

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

2006-11-06T07:25:00.000-08:00

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!

2006-10-27T08:02:00.000-07:00

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!

2006-05-25T16:56:00.000-07:00

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

2006-05-14T06:41:00.000-07:00

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

2006-05-12T07:43:00.000-07:00

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"

2006-05-09T02:28:00.000-07:00

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

2006-05-08T20:07:00.000-07:00

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

2006-05-08T19:41:00.000-07:00

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

2006-02-07T00:19:00.000-08:00

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

2006-02-03T12:44:00.001-08:00

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

2006-02-02T09:47:00.000-08:00

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

2006-02-02T09:34:00.000-08:00

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!

2006-01-31T21:37:00.000-08:00

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

2006-01-31T14:32:00.000-08:00

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

2006-01-30T13:44:00.000-08:00

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

2006-01-30T12:43:00.000-08:00

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.

Christmas Caroling

2005-12-23T06:55:00.000-08:00

As this Christmas season draws ever so close (two days away, in fact) I can't help but wonder about the religious message of the season: a child is born, presumably the savior of the entire human race, who will, at the age of 33, be viciously nailed to a construct of wood and left to painfully suffer and die. During his short ministry, whether you believe in it or not, this child-become-a-man would spend his time almost exclusively with the rejects, outcasts and disabled of his society. He did not dwell with the rich or the established members of the community. Instead, he sought out the infirmed and the down-trodden. Were he alive today this child would be abhored by those right wing, neo-con fanatics who claim to be his followers. He would forgive but stand-against the politicians who are stripping the poor and the disabled of their protections and rights as members of society to be cared for and assisted.

So what do we make of the message of a child born in a manger?

If this child was born so "perfect" could he have felt the pain and suffering as the nails were hammered into his wrists? Yes, it was his wrists not the center of this hands. This child knew that humanity is about being born with suffering, not creating unnecessary suffering. So, this season about a reflection on being born into suffering and pain, not about commericalism or some fat dude in an ugly red outfit. It isn't about trees being trimmed or families getting together to eat too much damn food and fight about dysfunctional issues that only cause wider rifts between families. Hell, I don't even know when the whole getting together for meals for holidays began! It's not like Joseph, Mary or Jesus ever sat around a table and dug into turkey and cranberry sauce! In fact, Jesus rejected all that crap and went begging.

The hypocrisy of the season which celebrates the birth of a man who spent his life tending to the poor and the disabled affects me deeply. The Christian Right which claims to know best who and what Christ was and what he wanted would preport that Christ was a God that wanted the rich to be richer and the poor, the oppressed and the disabled to fend for themselves. A man who abandoned his career and security to follow some foolish notion that he was a son of God in favor of helping those who suffered from physical, emotional and political oppression is in this present day and time the God of those who seek to slaughter the meek who don't believe in him as the Word of God. Don't fucking believe it! Jesus of Nazareth was not a capatalist who believed in getting what you want for yourself and fuck everyone else. He was a socialist who believed that the each of us who has more has the responsibility to help those who have less.

As someone who was raised Christian, nothing makes me angrier than thinking that those who are now in power are using the name of a man who ministered to the poor, the suffering and the disabled to justify they evil manipulation of monies and resources to not help those who are suffering, poor and disabled.

Sure, it's not much of a entry to celebrate the season of Christmas, but the fact is that a message of a man who sought only to help those who could not help themselves has been corrupted to the point where those who would like nothing more than to destroy the welfare and social security systems which help those who are disabled and suffering have actually convinced us that Jesus of Nazareth does not love them. It's disgusting and inhuman. And perhaps what's worse is that the citizens of the U.S. have voted into office men who believe that anyone who is not rich, able-bodied or can in some way be used to further their evil means should simply die off or be erased.

Merry Christmas, President Bush, Vice-President Cheney, Secretary Rumsfeld and the rest of you sorry bastards. Enjoy your expliotation of the poor and the suffering...your day is coming...

Sorry, if this one got too political...but I can't not say it, you know?

The Herd Thinning Plan

2005-12-17T07:28:00.000-08:00

Last Sunday I sat down at the computer and launched into the online Social Security "Adult Disability and Work History" application. If none of you have ever filed for Social Security disability benefits you are fortunate indeed. It's a laborious, intimidating, all-together overwhelming series of questions arranged in four sections, after which even the most able-bodied person is completely wiped out. It took me a total of 8 1/2 hours over two days to complete the application, and that was with every piece of necessary information organized in front of me. I have become OCD about my records, whatever they are, and have hardcopies of everything just in case such a circumstance arose. It appears to be working to my advantage as the Social Security agent who will be my liaison to the Social Security Office appeared impressed with the extent of my medical records, going back to my original hip surgery in 1977. But I couldn't help thinking that anyone who wasn't as organized would be mowed over by the amoutn of information asked for and how long it takes to fill out.

But it doesn't end there...

I'm going to have to file for disability benefits from the State of California. If I can get California to legally recognize me as disabled it will help my case with the U.S. government. I'll let you know what that application is like once it's completed.

It isn't easy for me, or for anyone else, to go through this process of disability benefits. We live in a society that looks down on anyone who requires "assistance," and the current powers-that-be would love nothing more than to eliminate all aid to the disabled in favor of lining the pockets of their corporate supporters and the richest 1% who support their insane political agenda. As a result, the disabled are made to feel like leaches and less-than-important members of society. It's completely humiliating. I busted my ass (literally) over the years, working beyond my limitations and suffering as a result because I didn't want to ask for help or be put in the position I now am of being "examined" by government officials who'd rather I crawl under a rock and die.

By the very nature of being disabled, I want to overcome the challenges fate has thrown against me. It really pisses me off to know that over the next 3 to 6 months an unknown number of faceless bureaucrats will be scrutinizing, double-checking and working endlessly to find any hole they can in my life experience to prove that I don't deserve assistance. It's the ultimate exercise in political hypocrisy. An agency which exists to assist the disabled work as hard as they can to find ways of not assisting the disabled. It's like an insurance company that takes your money so that you can be protected in case of "unforeseen" circumstances, and then when something actually happens to you they work their asses off to find ways of not giving you that money and assistance you've paid for. It's the biggest protection racket ever invented.

I know I sound cynical, but I also know that the Social Security and welfare system begun by President Franklin Delano Roosevelt (himself disabled) has been a thorn in the side of the conservative movement since it's inception some 60 years ago. The very instruments which helped the American people rise out of the ashes of the Great Depression have been labeled as evil and the conservatives and now the neo-cons are doing everything in their power to dismantle it. If it is the wish of the conservatives and neo-cons to eliminate the "weaker" members of the population they should bring legislation to legalize euthanasia. Hell, they are the ones who support the death penalty, so why not? But then how would that help their "pro-life" agenda?

Let's make sure babies, no matter what the circumstance, are born into the world...uh...unless they are born disabled, economically disadvantaged or members of an ethnic group not liked by old white men...then we can be not so pro life.

Is that too harsh?

How about this idea: let's round up all the disabled and use them like we use the economically disadvantaged and ethnic groups not liked by old white men...force them to join the military and send them overseas to fight illegal wars. Yeah, that's the trick! They'd make great soldiers, right? Think about it! What decent person could see a whole army of disabled people charging or wheeling or whatever way they can coming at them and still shoot them? Hey, we could make our own suicide bomber squads! Let's face it, it's better to use the already existing disabled than take healthy young people and make more disabled people...and you'll save money, too. With all the VA hospitals shutting down...sounds good to me! You can literally kill two birds with one bomb under this plan. And I'll call it The Herd Thinning Plan.

I think I'll write up a nice little letter to Mr. Rumsfeld and suggest it.

Consolation Prize # 3 - That Cool Blue Placard

2005-12-09T07:54:00.000-08:00

Growing up with a disability, but not really recognizing it as such, I oftentimes looked at "those special parking places" and thought to myself, "Damn, how cool would it be if..." Once I could drive I thought even harder about how cool it would be to be able to nab one of those spots so that I wouldn't have to cross some mammoth-ass parking lot.

After my hip replacement, I was given, at long last, one of those cool blue parking placards. It was all the rage with my friends, who suddenly were asking me to hitch a ride more than they had before. In fact, the damn thing got me laid a few times! No kidding...the cool blue placard is a chick magnet.

Of course, to look at me, you wouldn't think I deserve one. I'm not in a wheelchair, I'm pretty much ambulatory, and although I use a cane daily, now, I didn't at first after my surgery. As a result, I was often scrutinized by people who saw me park in a handicap spot and emerge from my then SUV and walk into the store. I just scowl back at them and point to my cool blue placard. A couple of years ago I parked in a disabled spot and emerged to find two older folks approaching me. I was with my girlfriend and said to her, "Oh boy, here goes."

The folks came up to me and asked me, "Are you handicapped?" Mind you, my cool blue was in clear view.

I said, "Look at the placard."

They then said, "So, college kids have been stealing them and using them all around town." First off, I've often been mistaken for being younger than I am, especially when I'm clean-shaven, but give me a break...I did not look a college kid. Secondly, I'm sure not all USC and UCLA students would appreciate being lumped in with placard thieves.

In response to the older folks passive aggressive accusation, I drew out the card given to me to present to airport metal detector monitors in case I set off an alarm with my metal hip and flashed it at these folks. I guess it was that and my accompanying sarcastic grin that forced them to back down and apologize.

As I put the card back in my wallet and walked with my girlfriend into the store I was struck with the reality of discrimination based on my youth as well as my being "more ambulatory" than is acceptable for a disabled person. Here I was a member of a minority class who was being discriminated against based on the fact that I "didn't appear" disabled enough!

But having a cool blue placard comes with great responsibility: unless I'm in extreme pain and/or having great difficulty moving, I never use one of the cool blue spots. I will also surrender the spot to someone who is clearly worse off than I am. It's a great consolation prize for being a disabled person...it really is! But the greatest impact of getting the cool blue was that it was the first step in the public recognition that I am a disabled person.

Consolation Prize # 2 - Dead People

2005-12-09T06:24:00.000-08:00

As much flack as I got for being a comic book fan and having played RPGs over the years, nothing I've done has caused as much controversy as my metaphysical activities. For those of you who aren't so sure what metaphysical activities means, it means psychic work and exploration of the unseen world.

By the time I was an undergrad senior at university I was so disillusioned about everything from politics to my own chronic pain, I had a spiritual awakening. Having waged a personal battle with the creator who gave me a body with which I couldn't do those things I wanted to do, I encountered a strange kind of teacher. For lack of a better term and to avoid talking about people involved who might not want to be mentioned, I will call this teacher my angel...my first encounter with many...and I'll call him Robert.

I met Robert in the summer of 1990. I began to work with him as he taught me all sorts of incredible esoteric concepts. At first I wasn't comfortable with Robert's teachings, but, eventually, I began to see physical proof of what he was teaching me. Over a period of several months I learned that my life and my disability had been no accident. There was purpose in my suffering. I was an instrument, a device for transmission, through which ideas and "voices" could speak. Whether it was through my writing or through trance channeling of the dead or disembodied spirits, I was able to help those who like myself suffered with pain, both physical and emotional.

Between the years 1990 and 2002, I was an active member of the metaphysical communities in Dallas and Los Angeles. Because I had lived under scrutiny and outside "normal" society, I discovered that the reaction to my perceived unorthodox activities was not as disturbing to me as it might otherwise have been. Of course, I lost almost all the friends I had to that point but I meet a whole new class of people who were themselves just as "odd" as I was. Most of them weren't physically disabled but they had found that they did not quite fit into the world in which they lived.

As my esoteric studies continued and practices improved, I began to understand that my mental and emotional detachment from my body made me capable of entering trance-like states extremely quickly and very effectively. My faulty body was actually a more efficient tool for channeling and meditation because I was less "grounded" to the physical world. Meditation and the holistic methods I practiced also helped me to control the pain I was experiencing.

However, by the mid-1990s, I began to see too much politics and in-fighting occurring inside the metaphysical community. The so-called "New Age" movement (a term which I never liked to begin with) had become as politically charged and exclusionary and any forward-thinking movement about which I had studied or of which I had been a part. When I moved to L.A. in 1997 I thought about taking as active and public a role as I had in the Dallas metaphysical community. However, before becoming a part of it, I observed it and determined that it, too, was too exclusionary and not forward-thinking. Since 2002 I have kept my practices to myself.

I have no doubt that what I have learned studying the metaphysics has taught me better how to manage my pain and my mental anxiety over being disabled. Again, my track of exploration was intense and, at times, excessive. So, I'm not sure I would encourage most people to explore alternative methods and practices in the way I did. However, there are great benefits that can be derived from developing the mind's power over the body. It can, at the very least, give a disabled person better control over a body which is not entirely under their own control.

I'm sure everyone who reads this entry will have a different reaction to my confession of being a believer in alternative methods, meditation, psychic powers and "the other-side." However, in practical terms, I was able to work for 10 years, coming to terms with my own body without putting any undo stress to worsen my physical disabilities.

But no matter how hard I tried to find answers from the other-side or improved my practices, I continued to experience chronic pain, worse than ever, and my body continued to break down...

Cast Off!

2005-12-08T08:17:00.000-08:00

Time to lighten the mood! After my dispersions on the medical community and my rant on anger, time to share something with you that is the only photographic proof of my childhood in a body cast.

This photo was taken only minutes before they came in with an electric saw to cut me free from bondage. Once they had, they sat me up and asked me to bend my knees. I couldn't, after some three months of not using them they were locked in place. So, a male nurse took a hold of my ankles and in one quick motion, bent my knees!

Oh shit, I screamed and cried and cursed every bad word I knew at 10, which turned out to be quite a few. My brother who had gone out to the car to grab something and was just coming in through the front door of the facility could hear my shouts from the other side of the building behind a closed door.

Consolation Prize # 1: Acting, Writing & Fantastic Worlds

2005-12-08T05:30:00.000-08:00

Having laid out the physical disabilities I live with, I want to talk about the non-physical aspects of my disabilities. However, my intention is not to say, "Hey, check out what great things can happen to you if you're disabled!" I don't believe it's anyone's job to belittle the reality of being disabled by trying to "think-positive" and "encourage" the disabled to not focus on the negative aspect of their lives. Fact is, as I explained when I talked about the positivity of anger, I think negative motivation can be just as positive and even more so than positive motivation. Each disabled person will in their own time find the way to their own light. It's not mine or anyone's right to decide when, where or how they will find that light.

For myself, the benefits of being disabled came out of a simple need to survive. I don't want to let anyone believe that the talents I developed out of being disabled were inspired by anything other than simple survival. Since my body began to break down at such a young age, my only outlet for coping was through my head and my heart. My coping mechanism was to deny the physical reality, even though my avoiding physical activities common to my peers was conspicuous, with which I lived. So, I developed an acute imagination and storytelling gift through which I channeled my anxiety, anger, frustration, sorrow and overall angst at my lot. This process took quite a while to maturate. It began with reading comic books, which featured freakish super-heroes and monsters to whom I could relate, because like me these heroes had a secret about themselves they were hiding. Many of them, especially heroes like The X-Men, The Hulk or Ben Grimm aka The Thing from the Fantastic Four were physically deformed or "monstrous" and therefore spurned by the world they were sworn to protect.

I needed to believe that even though I was "deformed," (and by medical definition I am deformed, even though its not considered extreme or even visible), "disabled" or "not normal" I also had to believe that I could still benefit and even more than benefit be larger than life in an effort to become acceptable by society at large. It's something every kid wants to do, whether disabled or able-bodied.

Since I couldn't amaze my friends and peers with physical achievements I had to capture their attention another way. I wrote short stories and skits which I read or performed in front of class, and I began acting in school productions. In fact, when I was in the sixth grade I adapted, directed and acted in Charles Dickens' A Christmas Carol. Of course I portrayed the Ghost of Christmas Future so I could wear a big cloak that hid my appearance and I didn't have a lick of dialogue. The production actually went off very well. So, I had found an outlet: acting and writing. My teachers, my fellow students and my parents were all very encouraging about my stories and my acting. Over the next several years I would continue to pursue these activities until I hit the worst side effect of my disabilities...

Depression began to set in when I was about 13 or 14 years old. My obesity got out of control and the pain I lived with was out of control. I abandoned my more public persona as a creative person and withdrew into the world of role-playing games or RPGs (i.e., Dungeons & Dragons, Champions, etc.). Like comic books and writing my short stories, through RPGs I was able to create alter-egos of myself who were able to achieve great things without limitation. Although the route to RPGs and my use of them stemmed from my depression over being disabled and my avoidance of real connections with my peers, except the very tight knit group of friends which formed out of my love of comics and RPGs both of which I believe saved my life. Without them I think I would have likely imploded. I had been experiencing suicidal thoughts as early as 7 when the chronic pain and nightterrors associated with Perthes began to take hold. Those suicidal and other powerfully negative emotions I felt I could act out through my creativity in RPGs and never saw the light of the "real" day.

Ironically, the first and primary character I played in Dungeons & Dragons turned out to be very like myself. He was physically weaker than other heroes (through an evil curse), an outcast by his own people, perceived to be negative, even though is actions proved otherwise, and had to compensate for his physical weakness by becoming a sorcerer and powerful wizard. How's that for psychological role-playing therapy?

Eventually, I stopped RPGs during college and began to expand my storytelling abilities by writing my first novel and eventually moving into the world of screenwriting and filmmaking. Those early exercises in performing, reading and drawing my favorite comics and engaging in RPGs sharpened my creative sensibilities and taught me how to create stories which not only expressed my own experience with disabilities but also how to tell exciting, engaging and entertaining stories. The talent for writing and creating allegories of my own struggle and the struggles I see in others lives is now a daily exercise. Having used my creativity to keep myself from succumbing to my manic depression and suicidal thoughts made the exercise of writing, acting, creating stories an absolute necessity. It has kept me alive.

Upside Of Anger

2005-12-08T05:26:00.000-08:00

Now that I walk with a cane, every day, and I can no longer hide the disabilities as I once could, the question I get asked most often is: how do you deal with it? How do you deal with the pain? Well, obviously I use medicine, but for the years when I didn't my answer is simple: I just did it. I just dealt with it, buried it, covered it and kept going. It's the question my orthopedic surgeon asked me when I walked into his office back in 2000: how is it your walking?

As bad as my crushed hip was, I shouldn't have been walking, but I was walking. So, my answer to him was: I didn't know I couldn't walk. The will to deny and overcompensate for my childhood, now adult, disability had become subconscious; it was an automated program that just kept running. My will had found something to fuel it for which I had become completely unaware of. So, what was the fuel that kept me going?

It was, still is, to be honest, anger, pure and simple. I was full of anger, rage and, yes, hate for my conditions. I felt I was making a statement not just against my conditions but against whatever creator was up there that would stick a kid as well as an adult with such a shitty fate. Believe me I have heard a thousand stories of "disabled" people who turned to God to save them or that blaming God is a cop-out for accepting physical reality as it actually is. So, before I introduce another controversial stance towards life with a disability, let me just say it straight out: I hate God, nature, genetic fate, whatever the hell you want to call it, for giving me every shitty recessive gene in my family!

No child deserves to be born crippled, addicted to crack or mentally retarded...NO CHILD DESERVES SUCH A FATE! And nothing that any priest, minister, psychologist can say to ever rationalize such a bullshit fate can even remotely justify what it feels like to a kid, let alone the parent(s) who watch their own child suffer, who can't like other healthy kids enjoy life!

But before I get too carried away...understand that this is just a brief example of my anger...my fuel...my will to overcome my unjustified existence. For me, it was nothing less than declaring war on the creator I was taught about in Lutheran Church and the faulty genetic strain I was stuck with. And I believe that anyone who has ever suffered unjustly has just as much of a right to feel whatever "unacceptable" emotions are born from such a struggle. Whether a person's suffering is racially motivated, politically motivated, genetically motivated, the victims of suffering have a right to be angry!

Anger is power!

Pain Management By Mary Jane

2005-12-08T05:23:00.000-08:00

Since 2004 I have taken many avenues looking for pain relief. And what I've found truly ironic is that what the health care professionals, as well as individuals outside the system, have the biggest issue with is methods of pain relief. The fact is that what makes life most difficult for anyone with a disability is not necessarily the disability itself but the side effects and, most often, the pain and suffering it causes. American culture doesn't like suffering. We are a self-indulgent culture and we don't like to be bothered or interrupted while we are going about our business. Because Americans are a self-abusive and addictive people those who don't have real pain abuse most anything they are giving to help relieve even the most minor pain. Consequently, those who do suffer chronic and/or severe pain pay the price. In other words, psychically damaged people abuse medicines designed for those who suffer with concrete physical pain.

I have used cigarettes, alcohol, food, Vicodin and Ibuprofin to combat my pain. All of these are legal but they all have terrible side effects when abused. In fact, using them can actually make a disabled person worse than they already are. However, I had never used anything that is considered "illegal." I had never used "drugs." But when the HMO and the medical system was no longer willing to work with me and provide me with the pain management I need, I went outside the system and investigated "herbal" treatments.

In my need to find relief and be functional while my body continues to rebel against my mind and my need to be productive, I have become even more radical and liberal than I already was! The reality that I am disabled, that I am a minority who is not allowed by the health care/corporate/political system to seek those means necessary to make me live as healthy a life as I can, has put me on the fringe and made my choice controversial.

How many disabled and suffering Americans live outside these forward thinking states and are forced to take poorly managed and highly dangerous drugs to relieve their pain? I don't know what if anything I can personally do to reach out and give hope to others who suffer, but I sure as hell am going to try. And I have come to realize that my creative gifts born from my disabilities are a means to that end.

A Real Pain In The Ass

2005-12-08T05:19:00.000-08:00

Even though having an artificial hip, bad back and neurological pain in my feet and legs was frightening and overwhelming, I understood that what had been making my life a living hell and would continue to do so was pain. I couldn't do anything to completely remedy my disabilities but I could remedy the pain, and I could make sure that how my disabilities were affecting my life would change. But this turned out to be the hardest battle of all.

Health care in the U.S. sucks. Let's make no bones about it. HMOs really suck. It's a scam. The pharmaceutical industry is in bed with the politicians and the medical industry is caught in between. Giant corporations, who are in bed with the insurance companies, own hospitals and the patients are caught in between. Neither doctors nor patients have the power to change this heinous system, so the doctors aren't able to help the patients who don't have enough money to pay for their services directly out of their pockets.

I knew all of this in the abstract, but now I know it personally. I have exhausted what I can get out of my HMO (Pacificare) and my HMO doctors won't help me any further than they have. I can no longer get the medication, which has helped me cope with my pain, and the medication they want to give me has side effects I am not prepared to endure. My HMO does not cover the physical therapy I need to help me overcome my pain and strengthen my body even as it falls apart. My HMO does not cover the physical therapy I need to help me overcome my pain and strengthen my body even as it falls apart.

On My Nerves

2005-12-07T13:21:00.000-08:00

While the symptoms I have been experiencing since 2004 could be caused by my spinal problems and the arthritis, a new possibility popped up while seeing the six specialists. It was the opinion of three of the five had I seen that I might have peripheral neuropathy: a neurological problem that results in constant (sometimes severe) pain in the legs (or arms) with no determinable cause. Many things can cause neuropathy. Most often Diabetes is the cause, but I was tested and diabetes was ruled out.

The neurologist I was consulting with conducted an EMG test on my legs, but the results didn't show any permanent nerve damage. However, at the recommendation of my orthopedic surgeon and neurologist I consulted with a neurosurgeon about my spine. He examined me to see if my spine was causing the pain but determined that my spinal problems were not yet severe enough. However, based on my symptoms and a sensory examination diagnosed me with peripheral neuropathy as well as definite areflexia. Areflexia is a loss of the "knee jerk" reaction that happens when a doctor hits your knees and ankles with that funky rubber mallet.

Shit, I was freaked out! Not only did I have the bone problems, but it looked likely I was confronting neurological trouble as well. The neurosurgeon told me that although the EMG didn't conclusively prove neuropathy, I had all the classic signs. On top of that, EMG tests often times don't reveal neuropathy.

Bottom line: I was seriously messed up. At age 38 I had a body more broken than someone twice my age!

Realizing now that if my immediate problems were likely connected to neuropathy my only viable option was pain management. Although surgery could correct at least one of my spinal problems it was absolutely no guarantee of pain relief. And considering I had already gone through at least two major surgeries either, of which, could likely be a cause for neuropathy and the inherent dangers of any back procedure, I decided not to get surgery.

Then & Now - Lumbar Spine

2005-12-07T13:11:00.000-08:00

Above are the 1994 X-ray (top) and the 2005 MRI of my lumbar spine which clearly show the slippage of my vertebrae. I attempted to scan in the MRI of my stenosis but it just wasn't coming out clear enough. When I can get that done, I will post it.

On the 1994 X-ray you can see an arrow drawn by the chiropractor pointing out the slippage. On the scan of the MRI I have photoshopped in red lines to show the alignment of my sacrial bone, while using a green line to show the alignment of the preceding vertebrae. Although there isn't a great increase in the slippage between the X-ray and MRI (thank God) there is degeneration of the bone in the MRI, as well as some visibility of the shrinkage at the base of the spine leading to possible pressure on the cord.

Back Off, Brother!

2005-12-07T12:32:00.000-08:00

Between my two hip diagnoses, in the summer of 1994, I was in a car accident that totaled my Honda Civic. Similarly to my being hit by the truck as a kid, I walked away from the accident; in fact, I drove my totaled car home. I saw a chiropractor because of back and neck pains and after an X-Ray was taken of my spine, I was diagnosed with a potentially dangerous spinal condition. The technical definition is grade II spondylolisthesis L5 on S1 with partial degeneration of the L5 disc space. In lay terms the last vertebrae on my spine had slipped forward off my tailbone and there was degeneration of my lower spine. According to the chiropractor even the mildest of apparent falls or accidents to my lower back could damage my spinal cord.

Not good...

However, with the same gift for denial I displayed for my hip disability I ignored my spinal condition and continued to ignore my problems and press on engaging in activities that could very well worsen my hip condition and now my spine as well. Believe it or not, I buried this diagnosis and eventually forgot about it all together...until the summer of 2005.

Beginning in middle 2004, I began to suffer pain, again. At first I thought the pain was further arthritis, something connected to my osteoarthritis but now spreading to my feet and ankles when the pain was the worst. However, I was also experiencing radiating shooting pains up and own both legs as well as severe Charley Horses in both legs. I would wake in the middle of the night screaming and had severe bouts of insomnia. I returned to walking with a cane, which I used following my hip replacement. Other symptoms appeared different from anything I had experienced with my arthritis problems.

A series of X-rays were taken of my feet, where the pain was most severe, my artificial hip and my left hip. The X-rays revealed my feet were fine and so was my artificial hip. However, my left hip was showing signs of early osteoarthritis. There was mild degeneration and some malformation of the head, but it wasn't anything my doctors were concerned about.

Eventually, after seeing six different specialists and battling with my primary physician, I had an MRI taken of my lower spine. It revealed the spinal problem first diagnosed in 1994, as well as a further problem: bilateral foramnia stenosis. In lay terms, my spinal column was shrinking from both sides, resulting in possible pressure on my cord. There was also continued deterioration of the bone. This could easily explain the new pains and complications I was experiencing. The only solution to stopping the continued slippage of my spine was back surgery. It wouldn't necessarily help the shrinkage. Either way, I was looking at another major surgery.

What an idiot! I had ignored my spine and now it was cropping up, again! Which just goes to show the power of the mind when it's confronting a problem it doesn't want to recognize. As a result, I was looking at major structural problems. These problems were chronic, debilitating and I was never going to be able to ignore being disabled, again.

Before & After - Weight Loss

2005-12-07T11:27:00.000-08:00

The upside (if there can be one) of my hip replacement was my significant weight loss. As mentioned, I was a food addict and extremely lethargic as a result of Perthes and the chronic pain. From ages 10 to 33 I battled obesity (oftentimes morbidly obese). I was obese for so long I couldn't have even imagined what I looked like after I lost the 100lbs. I had to lose in order to have a successful hip replacement. I used the Atkins Diet to achieve my weight loss, but I wouldn't recommend it for most people. It worked for me because of my large frame and heavy musculature helped my body withstand the tremendous stress the diet put on it.

I could never imagine the impact it had not only on how others saw me but on how I saw myself. It was completely bizarre! When I flew home to see my family for the first time since the massive weight loss, my own father, who had driven to the airport to pick me up, passed me by at the terminal. I had to shout out to him before he registered it was me.

I decided I'd show you the difference because it's as drastic as the contrast in the X-rays below. I chose the pictures from my drivers licenses that bookended the weight loss. I don't guess I need to tell you which is the before and which is the after. I was stuck with the before drivers license for two years after the actual weight loss, and in that time I had bouncers, cops and insurance agents tell me that I needed to change the picture, asap. They thought it wasn't me in the picture!

I'm going to write in detail later about how the weight loss and hip replacement directly affected my relationships. But I want to finish explaining the rest of my disabilities.

Before & After - Hip Replacement

2005-12-07T10:57:00.000-08:00

The top X-ray was taken early in 2000 after osteonecrosis destroyed my right hip. I apologize for the poor quality, but this is the best scan I could manage. There are fractures all across the head of the bone, and any healthy normal rounded shape is gone. It's almost completely flat. This is the direct result of a lack of healthy blood flow to the area, as well as continued deterioration even after my initial corrective surgery back in 1977.

The lower X-ray shows my artificial hip in 2003. Quite a contrast! This is what an uncemented full hip replacement looks like. The metal joint floats freely inside the cup attached to my pelvic bone, which means I have a larger range of motion than were it cemented. However, it also means that it could under enough stress pop out of the cup and surgery would be required to pop it back into the socket.

Hip? I Know Hip.

2005-12-07T08:30:00.000-08:00

In May of 1977, at age 9, just a couple of weeks before the premiere of "STAR WARS," I was diagnosed with avascular necrosis and Legg-Calve-Perthes Disease (or "Perthes"). Avascular necrosis is a disorder that prevents bloodflow to a certain section of the body. In my case, the right hip. Perthes is a debilitating and often times crippling form of arthritis condition that results in the deterioration of the head of one or both hipbones. Fortunately, it was my right hip only.

I had since age 7 displayed symptoms common to the condition: severe limp, night terrors, my right foot was pigeon-toed. However, only months before my diagnosis I was asymptomatic (no visible deterioration). In only a number of weeks my hipbone collapsed. There was no definitive cause for this condition, although there have been theories: at age 6 or 7 I was hit by a truck in the street. There was no visible damage, not even a bruise. There was also a possible genetic component: both my mother's father and her brother had hip conditions but not Perthes, specifically. Regardless of the cause, I had corrective surgery. I was in a body cast for almost ten weeks and then crutches for another five or six months.

While I was trapped in that cast, stuck in a hospital bed and later in a hospital bed at home, I was a real shit. Nurses actually transferred off the floor of the hospital so they wouldn't have to deal with me. But nothing was worse than the hole in the crotch of my cast. I had to pee into a plastic bottle, which I missed more than a few times and that was a whole damn thing. My muscles spasmed nightly and I was injected with muscle relaxants so that I could go back to sleep. Then there was the embarrassment...of my equipment...being visible...for all the world to see. Sometimes my mother would forget to pull the blanket over my boys when someone came by to see me. I would reach out desperately to grab the sheets, but they were always out of my reach. And then I'd have to flipped over like a pancake so my ass crack could breathe...and that was just as bad. I wouldn't let myself be naked in front of another human being, again, until I was in college.

After I appeared to make a full recovery, I was able to shove this disability aside and function like an able-bodied child, teen and adult, albeit with certain restrictions and unrecognized but significant side effects. I became obese, morbidly at times. I suffered chronic arthritis pain, which affected my personality and relationships. I suffered bouts of severe depression. Although I was in therapy for almost 13 years, the underlying reality of my being disabled and my chronic pain went unrecognized and untreated by everyone, including myself. I was never able to pursue physical activities like my peers and spent a create deal of time inside my own imagination coping with my physical pain. Intimacy with others was limited. I became a food addict to cover my pain. At my lowest point I weighed in at 315lbs. I was HUGE!

At age 31, I recognized the same symptoms recurring as when I was 9. The pain I had lived with for almost my entire life was then overwhelming. After almost a year, I finally found an orthopedic surgeon who recognized my disability and I was diagnosed with osteonecrosis - the adult form of Perthes. My right hip had re-collapsed. How I was able to walk was a mystery to the surgeon, who told me my only option was a total hip replacement. However, I was so fat no replacement would take. He told me that if I didn't loose weight I would be crawling into his office on my hands and knees in six months begging for surgery. I spent the next year losing over 100lbs.

In January of 2001, I had a total hip replacement. It took me almost nine months to fully recover, and I have never gained the weight back.

I'm Coming Out!

2005-11-28T07:16:00.000-08:00

Welcome!

My goal for this blog is to be informative, confessional, proactive, inspirational and all together controversial. The life of the disabled is more than I could have imagined and a struggle like no other. It is only now that I am coming into a full awareness of what it means to be disabled. And since I am a writer...well...I decided to write about it.

With that preamble, it's time to throw the first curve ball:

I was born the son of a gay church organist; that is to say my father is gay, a church organist and I am his son. I don't want to suggest that the churches he's played at are gay (not that there is anything wrong with a gay church...in fact, that'd be damn cool!), or that the organ which my father played was gay...uh, although, actually, I guess some of the organs he played were gay -- wow, that's too far, isn't it? Yeah, OK, that's going too far...

The point is that my father is gay, and for the first 40 plus years of his life he lived in the closet, playing the part of a straight man. Like my father, I have lived the first 30 plus years of my life in the closet -- the disabled closet. I succeeded in creating the illusion that I was able-bodied, so much so that I pressed myself to do jobs, engage in activities which actually worsened my congenital problems. In future posts I will talk in detail about my disabilities and my past, current and future battles with life as a disabled person.

Some of what I write will fall in line with what current Western medicine suggests about disability. Most of what I write here will not be supportive of what America calls health care or support for my unique minority group. I want to see changes, necessary changes in this society towards the disabled. To that end, I hope to piss a lot of people off, including members of the disabled community. It's been my experience that change doesn't occur until people get really anger, and I've got plenty of anger.

I'll do my best to be funny, too. Cause let's face it, I love to laugh at pain and suffering. I'm sorry, I do. I'm not saying that pain and suffering are in themselves funny, neither is. What is funny is the anxiety people feel when confronting it. I hate pity--pity, as well as self-pity. They are an an insult to those of us who suffer with circumstances with which we never chose to live. I believe the best way to break through that wall of pitiful separation is humor. The disabled need to let the world know it's OK to laugh about the suffering and at the same time not laugh at those suffering with them. Once we can laugh at adversity, we will find true empathy for those who suffer with pain and limitation. When I learned to laugh at my own circumstances I was able to admit, at last, to the world that I am a disabled person.

So, without further ado, my story...