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."
Wednesday, December 05, 2007
Tuesday, October 16, 2007
10.10.2007 - Judgment Day
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.”
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.”
Sunday, September 30, 2007
Writer's Block
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.
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.
Saturday, April 21, 2007
ART IMITATING LIFE The Trailer - Production Stills
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...
David Chung (assist. camera) (left), Adam, Matt & Ric
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")
Friday, April 20, 2007
ART IMITATING LIFE The Trailer is Online!
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.
Sunday, April 01, 2007
Trouble Me
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.
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.
Wednesday, January 24, 2007
Hugh Laurie Is Twice Golden!
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."
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."
Tuesday, January 23, 2007
One Little Victory...A Bigger Battle Begins
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.
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.
Thursday, November 09, 2006
The Masochism of Meaning
I have to begin with Happy Birthday, Laura! I love you so much! It's my girlfriend of 4 years birthday today, and I have to say that she has been my biggest supporter and biggest hero during my ongoing fight with disability. She has never wavered or been anything other than encouraging and optimistic even when I've been in my darker places. I can only hope that those of you who like me live with chronic pain can find someone to love you unconditionally in the wake of this terrible enemy.
I also have to say I couldn't be happier with the results of last Tuesday's mid-term elections. I don't want to skew anyone's view of me based on my political proclivities; however, I truly believe that those who suffer under the weight of medical problems can only benefit by having a Democratic congress. The Republicans goals to privatize Social Security and the most recent Prescription Drug Plan has done nothing less than undercut the aged and chronically ill. So, I can only hope now that the Democrats will made good on their pledge to change the destructive course of our neo-con leaders, help those who depend on assistance and to help stop a war which has needlessly taken the lives of American and Iraqis alike and destroyed the lives of those who have thus far survived.
OK, moving on to the final installment in my catch up from May, it's time to fill you in on the progress of my feature film project "Art Imitating Life." I'd like to tell you production is underway or shot and in the can, but as is the way of independent filmmaking we continue to find that final gap funding to get it all going. My primary production partner Haylee Twombly is doing a fantastic job juggling what are now three different groups who are seeking the gap financing. We still have one party who is prepared to give us almost all the money we need; however, we won't get going until it's all there. Too often indie films will get partial financing and during the filming of the picture loose it or not find the completion funds and the project stops dead before it's finished. I don't want that situation. This film is too important to not guarantee its completion and release.
It's a good thing that I'm use to pain and suffering because the bottom line is filmmaking is the purest form of masochism. The constant rejection, disappoint and failure to accomplish the mission of shooting a picture can really tear a person up inside. More over, my insistence that I be the one to physically direct this movie is absurd on so many levels because the stress it will put on my body is not going to help my complications or pain management. The stress alone is a big contribution to my daily problems. But if I don't, then this picture will not have what all other disability films have lacked, a true first-person vision of what it is to live with chronic pain. It's that goal, that aspiration that makes the suffering meaningful.
As long as suffering has meaning, it can be endured. Don't count on the meaning being explained by anyone else, and it won't come immediately. That meaning has to be discovered by the sufferer. And that's one of my other goals is to give anyone who suffers against a situation, physical or otherwise, over which they ultimately have no control to give it a meaning. It's not an easy task finding meaning in any condition of which a person becomes a victim, but it's facing that masochism of meaning that stops a person from being a victim and becoming a victor.
And so the work to get my film financed and production underway continues...
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...
Monday, November 06, 2006
From 3 to 4 a Day
Continuing backwards from what I've been up to since May, here's the skinny on my continued battle with chronic pain and my medications:
The pain is worse. No surprise. But you never are prepared or can really mentally adjust prior to a greater amount hitting your body. It's human nature to resist not accept pain (unless you're into the S&M, but believe me...I don't believe pain = pleasure -- no judgment on those who do; it's just not my thing). As a result, as much as I've known it would get worse, I was not prepared for the increased amount of pain. The only choice was to go back to my pain management specialist and get an increase in medication. After consulting with him, I'm up to four Hydrocodone (aka Vicodin) a day.
Whereas at one time I could get at least four to five hours of relief from a single Vicodin, that declined to no more than three hours of relief. I put up with the gaps in comfort for almost a month-and-a-half, but Laura and my friends just didn't understand why I would suffer when I could get relief. The truth is that an increase in pain medication would mean further acknowledgment of my decline. It sucks! As much as my psyche intellectually understands that decline is inevitable, emotionally, I want to rail against it. I want to scale the mountain and scream to Heaven...STOP THE PAIN! But that's not how it works. And, so, I headed back to my pain management specialist and an increase in pain medication was prescribed.
I joked when my use of Vicodin for pain management started that I really was like the FOX TV character House, who, if you don't know, uses Vicodin for pain management and also walks with a cane. Of course, I imagined that he probably took more than three a day, but now that I'm taking four, I'm thinking I'm right with this fictional bastard.
I'm not sure if I previously discussed why my two pain management therapists felt comfortable about prescribing an opiate that generally is viewed as an addictive agent that has, according to the media, destroyed lives over and over again. In general, there are two types of physicians, those who understand chronic pain and those who do not. Those who do not still view pain as a nuisance not a genuine condition or disability that deserves treatment. The other school of thought is that chronic pain is a legitimate condition that should be treated based on a patient's individual need to be comfortable.
My pain management specialists have determined, based on examination and testing that I have a physiology and psychology which can utilize opiates without the grave danger of addiction which the general public assumes everyone in the world will succumb to. The fact is that when the body is in pain, opiates work in such a way that the body doesn't become addicted to the opiate because the body is already addicted to the pain. The chemistry of the body and brain has been permanently altered by the continual assault from pain so that it doesn't become addicted like a "healthy" body and brain does.
A chronic pain victim has a difficult enough time coping with the pain itself, they shouldn't be made to feel like a drug addict because they want relief from it. To make someone who suffers constantly feel worse for wanting relief is pathetic and downright cruel.
In addition to the change in my Vicodin regimen I am now on a drug called Cymbalta, which, as you might have seen on TV commercials, is largely prescribed as a depression medication. I have since over the course of this year previously been prescribed Lexapro and Effexor for my depression as well as chronic pain. I've been switched to Cymbalta because in addition to depression, Cymbalta is also prescribed for neuropathy related to diabetes. I don't have diabetes, but the hope of my therapist and myself is that it will work on my neuropathy as both Neurontin and Lyrica haven't yielded comfort without serious side effects worse than pain relief.
I don't know how much someone who doesn't exist without medication can appreciate just what a bitch it is to have to constantly juggle monitoring the effects and administration of drugs. I have to make sure that every four hours I pop a Vicodin, and that's something easy to forget. But when the pain hits, boy, do I realize I forgot to take my medication thirty minutes ago.
In addition to my change in medication, the complications from the chronic pain have increased and begun interfering even further with my ability to do what I love to do...write. Sitting has been one of the problems, but now it's downright hellish. My ass hurts all the time! The base of my spine feels like swords are being stabbed into it. My legs feel weaker and my feet...well, my feet hurt all the time...ALL THE TIME!
OK, I'm really writing a depressing entry here...and I don't want it to be totally depressing. But the complications from sitting are leading me and Laura to discuss getting a voice program so that I can continue to write while shifting between sitting and standing. This difficulty sitting has kept me from writing as much as I want on this blog as well as my fictional writing. I'm going to work very hard to resolve this, because writing is what I do best.
As much as altering my writing habits are a necessity, each and every little thing I do in and around our apartment is being adjusted. I've always prided myself as a dude who knew how to keep his domicile clean. Making the bed, mopping, vacuuming, washing dishes and cleaning out our cat's litter box make me feel like I'm in control of my life and contributing to the well-being of the family. Now, even these mundane tasks result in my feeling unbearable pain afterwards. So, my incredible girlfriend, who works a full-time job, has to come home and do chores which I at one time was able to do myself.
The loss of personal freedom and the functionality to control your environment wreaks havoc with the mind of the chronic pain sufferer. So much of what a healthy person can do on a daily basis becomes unappreciated and taken for granted unless it can't be done anymore. Because I've had severe arthritis my entire life, I've always told people, you have no idea of how important joints are until you don't have them. They are vital to each and every physical action taken no matter how mundane. Now, more than ever, I believe that but not just about the joints. I believe that about each and everything a person can do no matter how mundane the action appears to be. This is one reason I am such a huge football fan. When I see those athletes performing on the field I am in awe because at no point in my life have I ever or will ever be able to do even a tenth of what they can achieve.
For those of you who love someone suffering with chronic pain, please understand that each and every action is meaningful for the sufferer and never take for granted even the most menial task. For those of you who do suffer with chronic pain, please pace yourself. Your body will tell you when too much is too much. You must listen to it. If you have to go from doing dishes once a day to every other day or every third day, do it. Don't be afraid to ask those you love to help you. Because they feel helpless in the wake of your condition, those who love you will find comfort in doing more around the house because it gives them an ability to help participate in your relief which will help them not feel so powerless.
Compensation and improvisation is the key to battling chronic pain. It can't be regimented for long and it keeps you on your mental toes, but at least it helps make you realize that no matter how bad your condition is, you are still in control of your life.
All right, my friends, that's it. My butt hurts. My legs are stiff. My feet are hurting. And I've done all the writing I can do for today.
Peace!
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!
Friday, October 27, 2006
Court of Injustice Now In Session!
What have I been doing since May?
(a) Working with my production partners to get financing locked down and production rolling on "Art Imitating Life."
(b) Adjusting my pain medications and everyday coping with my chronic conditions.
(c) Battling for my disabilities benefits.
I've let it keep me from blogging, but now I'm going to try and inform all of you on what I've learned. But first, I want to say a big thank you to all of you who have sent me encouraging messages. It's never easy to talk openly about disability, not to mention associated obstacles, but when the feedback is so positive, it gives me the fuel to keep writing.
From back to front (cause that's just the way my brain works), my fight for my disability rights has gotten downright gory. On June 15th I was notified by the EDD (the CA office that deals with disability rights) that I no longer had the rights for which I had paid while able to work a "regular and customary" job. Even though my primary physician had signed a Doctor's Certificate January of this year stating clearly that the earliest I could be re-valuated for possible return to work was June of 2010, I was now going to have to see a state paid doctor for independent evaluation. Pending this doctor's decision I continued to receive benefits.
When I arrived to see this doctor on July 26th, I was examined for no longer than 10 mins. No kidding. I had brought along my medical records, x-rays and my spinal MRI to show this doctor what had been determined by 9 previous specialists. When I offered to show this doctor my evidence, he said, "That's OK. I don't need to see them. It doesn't matter what any other specialists said, previously." He then proceeded to say that the x-rays and MRI's don't mean anything either as anyone afflicted with my conditions can show different symptoms and some people are fully functional regardless of my conditions. In other words, he was totally discounting my individual reaction to my conditions. So, in a nutshell, he refused to see my records and evidence.
The doctor (who will remain nameless at this point) seemed like an OK guy. I have previously spoken here about how I have had to overcome a strong prejudice about physicians based on my traumatic experiences from childhood due to my Legg-Perthes and other physical defects. So, I wanted to give this guy the benefit of the doubt and consider him a reputable and honorable physician.
On August 11th, I received determination from the EDD that their state doctor ruled me no longer disabled enough to continue benefits. I was ready to go back to work. I couldn't believe it. I was taken five different kinds of medication a day just to function and after only 10 mins. of examination and refusal to see the evidence uncovered by 9 specialists I was OK. Immediately I returned the appropriate forms to appeal this decision and within two weeks a hearing was scheduled in front of a judge. I requested that my benefits continue, even though it was possible that if the judge determined in favor of the state doctor's determination I would have to pay back whatever benefits I received during this time of appeal.
Once I received notification of the hearing date, October 12th, my girlfriend Laura began working hard to make copies of every scrap of paper connected to my disabilities. Of course, I confirmed first with the appeals court that such records would be admissible. They confirmed they were. In fact, they told me that I would need three copies. Believe me when I tell you that I have been nothing less than obsessive about keeping my records and having copies to present to anyone who might need them to verify my disabilities. Once completed, the stacks of records were huge!
On October 12th I went before the judge. Not only was Laura with me, but my friends David and Haylee were also present to give moral support and to give testimony if necessary to support my claim. However, when we were called in before the judge the cold hard truth of disability rights in not only this state but in the whole of this country hit all of us like a ton of bricks.
The judge assigned to review my claim was nothing less than cold and antagonistic. It was clear to all of us that she wanted nothing to do with my claim and completely unprepared to deal with the ammunition I presented before her. When she saw my stacks of medical records and the pill bottles I laid before her she look stunned. Laura and Haylee told me later that they noticed the judge looked at the number of bottles several times during the hearing. The judge stated that she wanted only information for the past year, disregarding a lifetime of evidence. Next, the judge asked Laura, David and Haylee to identify themselves. When they did the judge stated quite clearly that she would not accept any "lay" testimony, immediately nullifying any influence by those who on a daily basis witness my suffering. I was now left alone to fight for my claim.
But before I could even begin to state my case, the judge determined that she would have to schedule a second hearing as she had neither previously reviewed any of the records in my files and she would have to review the evidence I was now presenting to her which was not previously included in my file. My interaction with the judge was contentious at best, and I worked hard to keep my cool as she continued to dismiss anything I wanted to present to help my claim. Afterwards, my friends commented that they thought I had maintained my cool extremely well considering, and that had they been in the same position none of them would have kept as level a head.
What was most shocking was when the judge told me that the state doctor who had examined me noted in his report that he was not offered any previous medical records or test results to review. I was blown away by this, I told the judge that I had offered both records and tests results while I was sitting in front of him. What the hell?! Can you believe it? The state doctor flat out lied! It confirmed my worst fears not only about doctors but that this state doctor was being paid by the state to block my rights! I was stunned! Later, after I got home, I was fuming! To be fair, the judge was also stunned when I made it clear to her that the state doctor was lying. She asked me if I would testify, under oath, that I had offered records and test results to the doctor and he refused. I said, "Yes, your honor!"
Finally, the judge told me to explain to her exactly what my problems were and why I could no longer work as the information I gave her was more than she could understand. Apparently, this judge had no way of interpreting what my medical records said. In other words, a judge whose whole job is to determine if a disability claim is valid has no background whatsoever to determine what is a disability. When I began to explain to her my conditions and the resulting complications, she stopped me and said that she needed for just one doctor, my primary physician, to write a brief no longer than 3 pages telling her in the most simplistic terms possible why I couldn't have a "regular and customary" job. I told her I would get it, but I also asked her why I was requested by the state to provide medical records if they weren't going to be reviewed. She flat out told me that she didn't know, because medical records are never reviewed by the state.
OK, this was the second bomb...I said, "Your honor, you're telling me that state neither reviews nor takes into consideration medical evidence of disability?" She said that the only evidence the state accepts is what their paid doctor says. I was thinking, holy shit! This bastard had lied about being offered my medical records and test results, so what else had he lied about? And this was the only evidence the state was taking into account? My God...I was screwed.
After the hearing, my head was swimming. It was a nightmare scenario. Not only was I having to defend and prove a lifetime of disabilities that were now preventing me from functioning in a way that the state defines as "regular and customary," but a state paid doctor was lying to the state in order to keep me from the benefits to which I had a legal right! More than this, though, was the thought of what other disabled people go through. I had always been prejudice against the state and the medical industry in its efforts to keep the individual from their rights, but now not only had I proof, I was living the nightmare!
Again, to be fair, I know that more people take advantage and screw with the system to get benefits they don't deserve. I'm not naive about that, OK? But what is a person to do who genuinely has a right to benefits when the state is actively working to prevent them?
I wish I could tell you what the result is of this ongoing fight; however, I won't know until my next hearing scheduled for November 30th, so stay tuned. I will be meeting with my primary physician on November 15th to ask her to write up this 3 page brief to the judge. I can only hope and pray at this point that my primary will agree to do this. I don't know what to expect. Shit, I had just gotten over my aversion to help from doctors and now I'm back to square one.
When I told my shrink about all of this she was also stunned. She assured me that if necessary she would testify to my providing this state paid doctor with an opportunity to review my records. That meant so much, but, to be honest, I don't know as it will mean shit in the wake of what is clear a court of injustice designed to do nothing less than prevent the rights of the citizens whose tax dollars pay their fucking bills.
So, what's the lesson, children? Don't trust the state...ever. Understand, they will not review evidence that supports your claim. They will pay doctors who lie, who disregard the Hippocratic oath. Regardless, you must, and I can't stress this enough, get and keep every scrap of evidence to support your claim. And fight! Fight! Fight! Don't let them steamroll you! It might not be a fight you can win in the courts...for me that has yet to be determined, but if the fight can be dragged into the public arena and into the media then do it! I swear to you, I will! I'm going to make sure the public is made aware of this court of injustice in the hope that others won't be subjected to this kind of humiliation and blatant disregard in the future.
(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.
Thursday, May 25, 2006
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!
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!
Sunday, May 14, 2006
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.
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.
Friday, May 12, 2006
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.
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.
Tuesday, May 09, 2006
"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."
Monday, May 08, 2006
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?
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...
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...
Tuesday, February 07, 2006
Timing Is Everything
Yesterday morning, one of my business partners with whom I've been working for more than 10 years to get our indie film company up and going has told me they are leaving the company, if not the whole entertainment industry. So, now I have to sit down with my other partner and decide whether we continue forward as we have or take another direction with the company.
In light of my coming to terms with my disabilities and my fight for benefits, this couldn't have come at worst time. I'm not going to rail against this ex-partner for their choice of timing nor will I get into here the details of the situation me and my other partner are now in as this ex-partner departs the company. However, if timing is everything, then everything sucks.
To be honest, I think after 10 years of trying to start up a film company you have every right to quit. Most folks don't even last a year in an endeavor without an immediate return, let alone a decade. So, I have to give my former partner credit there. But what amazes me more is that I haven't given up on my ambition and goals as a filmmaker and writer. Afterall, I have had some personal success in both arenas, although nothing anyone in the larger public would consider a windfall.
What occurs to me, though, is that my having to battle with my disabilities, overcome them and constantly battle each and everyday to cope has given me a natural determination - an almost instinctive will - to not give up when encountering adversity or "failure." That's not to say I haven't thought a million times or more about just throwing in the towel, and I have definitely taken mental vacations from the struggle. However, I always return to the battle and count each and every success, no matter how minor, one step closer to the ultimate goal...whatever that goal might be.
For all the negative side effects disability brings us, it also embues us with the capacity to withstand even the greatest of challenges. If I have gotten this far and achieved what I have achieved then no one else's choice, no matter how adversely it affects my goals, will stop me from continue my pursuit. This is not to say the disabled person can win every battle - no way! In fact, it's more important for anyone confronting adversity whether physical, mental or emotional to pick and choose their battles, because many battles will be lost. But what I learned yesterday was that for myself, the harder the adversity, the greater the challenge, the more success I discover when I reach the end of my goal.
And as I've learned through my studies of Buddhism, those who and that which hurts us teach us the most valuable lessons.
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.
Friday, February 03, 2006
Finding Your Voice
Nothing is harder for an artist than when they discover "their voice." One of two things will happen: either people will love what the artist has to say and how they are saying it; or they will fear, even hate it.
Regardless of what you might have been taught in school about America standing for the individual's pursuit of their dream, American culture and the powers-that-be would rather you just shut the hell up and stand on line...be a drone. When was the last time you heard any politician or social leader on TV actually say, "Yes, we want you to do whatever you really want to do. Go out there, be your own person!" It's more likely you'll here, "Don't rock the boat." I'm not saying their aren't politicians and social leaders who aren't saying "Be your own person! Make your own personal statement!" I'm only saying you don't see them on CNN and certainly not on FOX News. If you do happen to see one, well, it's not going to be a very favorable report.
It's very discouraging for any artist who discovers their path to have road bumps or even detour signs appear along that pathway. No one can withstand pressure for long. It's why most artists become fall back on graphic design or some other can out of outlet for their creativity which can best serve corporate America.
In my experience, the only way to have your voice protected against obstacles is, and I know it sounds a little corny, honesty...to one's self. There is nothing else that can better protect the artist's unique voice than to simply put themselves out there with full disclosure. The truth is that commitment to one's art or one's voice is not enough, an artist needs conviction. In other words, you need to be so sworn to have your voice heard that you are indistinguishable from the message. You have to be prepared to take blows and be wounded in any fight...and putting a vision out there, speaking with a voice never before heard will result in fights.
I'd like to say it's easy, but it's not. It's taken me more than 10 years to have my particular voice finally find people who jive with it. But you have to keep at it! Finding your voice will be a mixed bag at best, and every artist will have bouts of laryngitis over the course of their work. But you have to keep at it. The only way to change the status quo is to not buy into it. It's as simple as that.
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.
Thursday, February 02, 2006
Degeneration X
It stuns me how inane and stupid most of my generation really appears to be. I can see why someone like George W. Bush and the Religious Right can so easily seize control of the country when my own generation, which thrives off MTV and video games, has become desensitized to the reality of war, poverty, sickness and famine. Their addled minds have become manipulated, and they simply don't give a shit what happens to anyone other then themselves.
I suppose it would be easier if I wrote in a series of sound-bites and incomplete thoughts like:
See and feel their repression.
See and feel their fear.
See and feel their hatred.
See and feel their deniability.
Or maybe something more personal like:
I know pain.
I know suffering.
I know insomnia.
I know depression.
Hmm, sounds like poetry, doesn't it? Of course, none of it really matters. It doesn't matter how much or how little I write to express my thoughts. I am expressing them and that's all that matters. Expression of our individual selves is what my generation needs to do more often. How each individual does it is just a matter of style and technique.
The one thing I have always recognized as a writer is that when I get negative feedback, the reader has still read it. As long as someone doesn't show enough intelligence to actually tell me why I should stop writing, or what it is in what I wrote with which they disagree, then I have to believe my writing affected them in some way. At the end of the day any writer will tell you, "I don't care if the reader likes or dislikes what I've written, the fact is they read it and were affected by it!"
I have written and will continue to write controversial stories that most people will likely have to seriously think about before they understand them, but they will make them think. Similarly, when I write something like this blog or tell my own story they will think me wordy, didactic and too opinionated. Good, because most of my Generation X have let their intelligence and free will degenerate through a manipulation of pop culture and mass media by narrow-minded, corporatist and greedy old white men who have seized control of a nation that once gave a damn about individualism and free speech.
As much as I hate and resent the fact that my body is degenerating and that decay can't be stopped no matter how much medicine I take or how many operations I undergo, at least my mind hasn't.
I spent almost 30 years keeping my mouth shut about my disabilities and life with chronic pain. I'm not about to listen to any dipshit who doesn't have enough balls to actually tell me what is about my writing or telling my story that's a lie or not good enough to write, read or be seen. So readers, get ready, because I haven't even gotten started. Bring the feedback on! Negative or positive, I live for the debate! And if you haven't let your mind be degenerated you'll welcome the debate too.
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.
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