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

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

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

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

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

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

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

Facing The Problem Is Appreciated

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

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

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


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

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

Appearances Are Deceiving

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

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

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

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

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

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

"Art Imitating Life"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chronic Humiliation

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

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

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

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

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

The Heart of Darkness

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

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

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

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

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

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

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

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