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

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

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

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

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

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

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

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

Thanks.

Thank You For Lettin' Me Be Myself

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

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

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

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

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

"Fully Favorable"

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

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

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

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

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

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

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

10.10.2007 - Judgment Day

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

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

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

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

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

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

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

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

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

Huh?

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

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

Bottom line: I WON!!!!

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

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

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

Writer's Block

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

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

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

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

ART IMITATING LIFE The Trailer - Production Stills

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

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

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

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

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

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

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

Juliana Dever & Paul Kapellas ("Lenny")

Adam Tash (right) & Matt V V

ART IMITATING LIFE The Trailer is Online!

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.