Day 33 Afternoon — Vanishing From Myself

Sorry for five days of silence. I hope it will not happen again because it does not make me feel any better but significantly worse not to write in this blog. It's incredible and terribly ironic how often we avoid doing the basic things to ensure our happiness and serenity. Often I get caught in the cycle of wasting time by watching television or making silly memes on the internet or reading comics; basically doing anything other than what I was put here on this earth to actually do and achieve. I don't know exactly why I vanish from myself, becoming in essence an invisible man in relation to my spirituality and my authentic self, but I have some pretty good guesses.

Vanishing From Myself Without A Decent Bowler Hat

The most obvious reason is fear. I will never forget when I was a teenager and read Frank Herbert's science fiction masterpiece Dune for the first time, and I was so influenced by the following quotation: "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain." Yes, fear is still and always will be the mind and soul killer, but it offers only the most base explanation of my actions. There is so much more to express when I delve into the details of those character defects.

As an alcoholic, my reaction to fear is an immediate need to escape. In the past, I found such balm through the lens of my addiction to cocaine and heroin. Now I no longer have the option to self-medicate  because I have turned my will and my life over to a higher power that I choose to call God. Still, even though I am sober, I struggle on a daily basis to act through the lens of principles as opposed to fear and the ego of personality. I relapse on my character defects on a daily basis, and my avoidance of these pages is an avoidance of the weight of facing my own truth and the burden of expressing the wonder and the banality of what I experience. In truth, I have so much to write about and so much to say, yet I run away from the incompleteness of these words and the impossibility of perfection.


Does that make any sense? Maybe a little and maybe not so much, but I embrace this journey of expression and I vow to do a little bit better as I continue to progress along this path. 

Day 28 Morning - Holly's Beautiful Message and the Nature of Forgiveness

Holly:

Enjoy your life one day at a time. Don't worry about the "bone head" mistakes you've made in the past. Leave them there. Be smart enough to know the next time you have a decision to make. I've been reading my friend's (John L.) blog. His words make me laugh and they make me cry. From this day forth I will strive to be my authentic self and steer clear of any negativity that tries to enter into my life. John is fighting for his life. I know with God's help, THEY will win. God Speed, John Lavitt


Above is the message that my friend Holly posted on her Facebook page for all of her friends, tagging me in the process. I must admit that it took my breath away. I have not seen Holly in over fifteen years, and we recently became reacquainted through Facebook. But there are so many people from my past who I have reconnected with through Facebook, and we barely qualify as Facebook friends. I lived with an old housemate for over seven years in two different houses, and Albert won't even return a phone call or an email. But this has nothing to do with Albert, and I am not pointing or wagging or raising a middle finger. We will return to Holly's message in a second, but this thought needs to be addressed.

No Throwing Stones — Forgiveness is not Found on a Timeline or a Yardstick

I caused a lot of damage and wreckage during the years of my addiction. What was it like for Albert to learn that his housemate was doing illegal drugs in his home every night? How callous and self-centered I must have been to live with? I cannot throw stones at Albert because he has not forgiven me for my past actions, because he has chosen to move on. If I crossed a line with Albert that was his rubicon, then there is no turning back and that is past. Such is life or C'est La Vie because the French seem to express it so much better in the exact same words. As the Grateful Dead reminded me during my college years and beyond, throwing stones only leads to more destruction, and I would rather dance and shake my bones still to this very day without needing the cash or feeding any jones.

Rat cat alley, roll them bones. Need that cash to feed that jones.

And the politicians throwing stones,

Singing ashes, ashes all fall down...

Singing "I got mine and you got yours."

And the current fashions set the pace.

Lose your step, fall out of grace...

So the kids they dance, they shake their bones

While the politicians are throwing stones

Singing ashes, ashes all fall down.

I do not want to sing the song of the ashes and I do not want to throw stones at anyone. I hope that I have left such bitterness and vengeful anger behind. Forgiveness by another is not found on my timeline or measured by my yardstick. If I truly change my ways and patterns of behavior, then I have to realize that everyone has their own process. With other people, I must give them time beyond my desires and wants to process what happened in the past, and I must honor their timelines and their yardsticks. I must respect the process of dealing with damage and pain of other people as much as I want them to respect my own process. And God only knows, I hold my process sacred and I "hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." Man, that Thomas Jefferson sure could write! 


Forgive such an absurd aside, but when one rises like the morning sun in my mind, it hard to push it down back into the darkness. And it makes me smile, and I cannot afford to avoid any smiles these days. Nothing has made me smile more in the past week than receiving Holly's beautiful message. Not only did she say that my works make her laugh and cry, but they actually inspire her to take positive action in her life. And Holly is a powerful human being who always chose her words carefully (unlike many of my peers and myself for that matter) and followed through by turning her words into actions. I truly appreciate the support of such a person, and I thank her kindly for her love. 


Mind you, I am fighting to get well, but I am not fighting for my life like so many people in cancer wards or dying of AIDS. The treatment is tough, but there are worse things in the world, and I have faith that everything is going to be just fine. Yes, I will respond to the treatments. Yes, I will clean this virus out of my system and restore my liver. Yes, I will walk through this crucible of health with grace and dignity. And the Godspeed that Holly wishes me to experience will be a watchword as I move forward across the landscape of this disease. But this is not Samuel Beckett's landscape of extinction (a later blog to come), although we all need to keep precision close to our hearts and to walk with the definition of faith. Plus a hug every once in a while seems to help...

What Compares to the Support and Grace of Friendship Freely Given?

Day 26 Night - The Great Spirit Morning Prayer of the Lakota Sioux Medicine Men

Below is the Native American prayer I recite in the morning, at night, and when I am walking alone in my neighborhood. Since I do not have a parking space and the neighborhood is popular, I often have to park 2 or 3 blocks from my apartment. At first, it would piss me off, but now I find those walks to be peaceful and meditative. If I have packages, I temporarily park in a driveway, carry them up the stairs, then move the car.

More importantly, for me this prayer that the Sioux medicine men said when they rose in the morning to greet each new day covers the proverbial bases and sings a song that seems to come from within. It is as if the words reflect my own soul and discovering for the first time was like finding a piece of my spiritual home. I value the truth behind the realization that I am my own worst enemy and the beauty of leaving this life with humility and love and without shame. Please never forget that although I stumble here and there and my voice falters  though I fall and scratch a knee, I rise again with a smile and return to the path that has been laid out before me. Here is the prayer...

Morning Prayer of the Lakota Sioux Medicine Men

O Great Spirit

whose voice I hear in the wind,

and whose breath gives life to all the world,

hear me.

I am small and weak.

I need your strength and wisdom.

Let me walk in beauty,

and let my eyes ever behold the red and purple sunset.

Make my hands respect the things you have made,

and my ears grow sharp to hear your voice.

Give me wisdom so I may understand the things

you have taught my people.

Let me the learn the lessons

you have hidden in every leaf and rock.

I seek strength not to be greater than my brother or sister,

but to fight my greatest enemy, myself.

Make me always ready to come to you

with clean hands and open eyes

so when life fades as the fading sunset,

my spirit may come to you without shame.

Beautiful Sculpture of Native American in Reverence at the Museum of Fine Arts in Boston 

By Cyrus Dallin, Appeal to the Great Spirit is a bronze equestrian sculpture outside the Boston Museum of Fine Arts. A native of Utah where my entire nuclear family now lives, Dallin had a lot of interaction with Native American children while growing up, and this experience informed his art with insight and care. I love what a simple and direct representation is conveyed in this moving piece of art. Look at how unidealized and normative is the horse and how truly reverent is the warrior in what appears to be a truly authentic moment of prayer and reverence.

Day 25 Night - The Weight of Being A Burden on My Family

Over the past couple of days, I have been feeling the weight of being a burden on my family as I prepare to go through treatment. My business is not going terribly well, and I am not sure if I will be able to keep up with it when treatment begins. According to all my sources, the first two months of Interferon treatment tend to be pretty terrible, wiping out the patient every week with flu-like symptoms. Since I will be officially admitted to the clinical trials next week and I will have a liver biopsy, each day is becoming more important to prepare for the coming treatment. But I simply do not have the resources right now to do everything I want to do to make sure that it will be a smooth and sane process. I know I will get through this next hurdle, but it creates a lot of stress and anxiety. My psychiatrist has told me that it is essential for me to reduce stress at this point in time, fostering an internal equilibrium that will carry me through the process. I know in my heart that everything will be okay, but I honestly am frightened right now.

Emotional Baggage and the Overwhelming Weight of the Past

I have put my family through more shit than any family deserves or should ever have to deal with in several lifetimes. The guilt over the damage caused during my years as a drug addict and the weight of those regrets is sometimes downright overwhelming. I try my best to stay positive and believe that everything is going to ultimately work out, but often I sag beneath the burden I chose and created. I mean, I cannot avoid the weight of my own responsibility, and I have to accept the reality that this is what I did to myself and nobody else is to blame. I wish acceptance meant change, but I so often relapse on my character defects and act like an addict or alcoholic, slipping down the slope of indulgence and self-pity and self-centered bullshit. Honestly, I so want to realize the dreams of my life and walk the walk on the path that my God has laid out before me. If I am to succeed on that level and walk through this crisis with grace and dignity, I must toss aside the easy bullshit of the couchaholic. I have to have faith that everything is going to work out and that my health will be restored and I will have another chance to be and to become the man I was put here on this earth to be.

I can do this and I will get through this crucible with the love and support of my family and friends. Please forgive me if I wallow in such small emotions here and there. If I do not drain my head of this crap, it becomes a toilet swirling with the refuse of my disease. Even worse than a toilet, it becomes a dangerous neighborhood with my fears transformed into criminals looking to mug and rob my dreams, my hopes, and my soul. I know that's a bit much, but it is strangely true. Even now, I feel the pollution of this disease in my body, and I know my liver is not working properly to clean out the bile. But the disease barely has a foothold and if I can survive treatment and move forward, I believe it will be eradicated from my body and I will be given a new lease on life. Let's hope and pray...

Day 22 Afternoon - "You Are A Natural Born Teacher With A Voice That Needs To Be In This World."

On Friday night, I spoke at an Alcoholics Anonymous meeting in Los Angeles, illustrating in depth how I am using my tools and practicing the principles as I go through the process of Hepatitis C treatment. Although I have yet to start the actual treatment, I have been in and out of hospitals and making progress in terms of finding the best available options and marshaling my resources. When I speak about working the 12 Steps of Alcoholics Anonymous, I describe them as tools in a tool belt that help me deal with the challenges and the roller-coaster ride of everyday life. After all, in truth, alcohol and drugs were not my problem. They were my solution, and they stopped working as an escape from reality and into the refuge of my disease of perception. Ultimately, I was and am my own problem, and the 12 Steps give me the tools and the tool belt to live a life based on the spiritual truth of principles and not the emotional swings of personalities.

Do You Actually Use Your Spiritual Tool Belt When You Need It?

When I was a kid and I first used tools, I wasn't any good at using any of them. Unless you are Thor, when you first use a hammer, you are bound to bang your thumb and pound the nails bent and flat. When you first use a screwdriver, you can't tell the difference between a Phillip's head and a regular old screwdriver. Whenever you begin anything, there is a process of developing your skills. The exact same is true with spiritual and emotional skills like taking inventory, developing boundaries, letting go of the bullshit, walking in faith and not fear, working on your character defects, making amends when you do something wrong, meditating and praying, and so forth and so on.

Every one of these skills works in practice, but it takes practice to apply them properly and to know how to use them. Contrary action and proper measure (avoiding the extremes of emotion and perception) are difficult skills to actually employ and to trust that they will work. In fact, I had to go through a long period of being aware of my shit before I actually was able to clean it up. And such an awareness can be excruciating.

Okay, this basically is what I talked about at the meeting and how these ideas applied to my own experience of dealing with Hepatitis C and the challenge of starting treatment. I have found that it almost always works better to talk about ideas as they relate my experience as opposed to how they may and could relate to anyone else. People listen when you apply lessons to yourself as opposed to projecting them outward. After speaking, the meeting was open to sharing, and I called on anyone who raised their hand. At this very moment, something unexpected and wonderful happened.

A Powerful Message in the Ernest Sweater of A Grandfather

To the side of the room, a heavy-set African American man in his mid-sixties raised his hand. Wearing one of those reddish patterned sweaters and thick brown glasses, he looked just like a Grandfather from a movie or a sitcom. At least, that is the stereotype that popped into my head when I saw him. When I pointed at him, he stood up slowly, bearing his weight, and said something like this: "Young man, you have to do those treatments and listen to your doctors because you are a natural born teacher with a voice that needs to be in this world. Not very many people were ever able to teach me anything, but you taught me something tonight. You used images to show me what you meant and you made me think about a lot of things. Your voice is a gift from your God and you need to get well and let that voice be heard."

Wow! To say I was blown away and complimented by what he said would be an understatement. It touched me deeply and gave me a certain perspective on my own sense of value. If this crucible of Hepatitis C treatment is about anything for me beyond getting well, it is the motivation to free my voice from the chains of fear and the false shadow of mediocrity looming. You never know when and where you will hear a message that will hit you in the place you need to be rocked, awakening a latent awareness of your own purpose and meaning. This is the essence of this journey. If I am fearful of starting treatment, it is because I am scared that I will be unable to walk the walk when in the eye of the storm. Can I continue to sing when the crucible becomes a reality?

Enough of such melodrama for now. I know the questions and thoughts are legitimate, but language can be dangerous if it is abused. If I couch the challenge in ultimatums, then I sink into the quicksand of a logical fallacy. This is not an absolute or a totality, but a process that will be handled one-day-at-a-time in the nuts&bolts reality of the present. And the story of the older African American man whose name turned out to be Ernest is far from over. After the meeting, the Secretary told me that Ernest had spoken the week before and needed a ride back to his neighborhood. Would I drive him a few miles to where he needed to go to catch a bus? My answer came without hesitation: It would be a pleasure to give Ernest a ride to wherever he needed to go.

As we drove to his bus stop where he insisted I drop him off as opposed to taking him home, Ernest revealed several things to me that widened my understanding and and opened the doors of my perception (forgive the casual reference to the Aldous Huxley classic). Although he is indeed a Grandfather, he recently had been released from prison where he had spent years because of an intensely violent criminal past. In prison, he had discovered his faith, although he still felt uncomfortable on the outside. When a cop car blazed by us with sirens blaring, he startled for a second, then laughed with the comment: "I always am surprised when they don't pull me over because I still think they are coming for me. Back in the day, it seemed like they were all gunning for me." My connection with Ernest was a pleasure, and I was sorry to drop him off and lose the company. In retrospect, I wish I had invited him out for  a cup of coffee of a bite to eat. Without question, it was an enlightened moment of rare spiritual intimacy with a true stranger. As we drove, Ernest kept expressing his gratitude and reminding me of his message. I hope that I never allow myself to forget what he said and I never lose track of my voice.

And I'll leave this post with a little graffiti that reveals the way with the jagged grace of anonymity that needs no caption from this grateful boy.

Day 21 Night - A Relapse Dream, Freedom and a Questionable High Five

Sorry for three days of silence. Everything has been fine. Even better than fine with some actual good news. Sometimes I feel burdened by the words. There is so much I wish to express, so much of my experience and the cavalcade of thoughts and feelings, and I become lost like a virgin shopper in a cavernous department store, wondering which aisle to wander down next and where might the exit be. I will do my best to be easier on myself, more gentle and loving, and not so damaging and foolish amid this whirlwind of expectation and fear.

Okay, so I just woke up from the worse relapse dream I have had in years, and it was all about smoking cocaine and crack out of glass pipes, scraping the residue and scouring a wooden floor like a rabid maid for a dropped piece. In a most pathetic battle, I was fighting over the next hit with a friend turned devilish competitor. How disgusting and truly awful it was, and how grateful I am for the freedom of my sobriety. I was a slave. Let's not mince words, and I mean no disrespect to the historical legacy of slavery or the actual victims of the present day. But I was a slave to my addiction and it turned me into a monstrous creature, and I am so grateful to be free of those chains. Yes, this health crisis is a challenge, but it is a challenge that I face with the dignity and the grace and the fear and the wonder of my own authenticity. Not some grubby and pathetic crackhead willing to sacrifice anything for the next hit, but John in the seat of his own actuality, present for each challenge and ready to face whatever difficulties are to come. Sobriety and the gift of recovery has given me the blessing of being the captain of my own ship. Yes, this ocean is the provenance of God and I know who ultimately is in charge of the tide, but I take a deep breath, ready and willing to face the next wave with a smile.

With Big Waves Rolling In, The Confidence of Being Your Own Captain

Mind you, the next wave that was rolling in with the easy vengeance of a Tsunami when I fall into my drama queen mode were the CAT Scan results of my right kidney and the identity of the 1.7 cm by 2 cm lesion that the Ultrasound found lingering like an unwanted visitor. Most likely it was just an angiomyolipoma, the most common benign tumor of the kidney that is composed of blood vessels, smooth muscle cells and fat cells, but there was an outside chance that it could be kidney cancer.

When I told the doctor at the clinical trials about the angiomyolipoma, he said we had to wait for the results of the CAT scan before they could admit me into the trials. However, he commented that if it was a cancerous tumor, it was a total slam dunk and I was truly lucky that they had found it at such an early stage when it could easily be extracted without the loss of my kidney. He quite literally offered me a high-five. In response, I shook my head and told him there was no way I was going to give him a high-five to celebrate the possible existence of a cancerous tumor in my right kidney, no matter how lucky that discovery might be in medical terms. This was a questionable high-five at best and clearly shows why the man became a research doctor and not a priest or a teacher or a shrink. I mean, dude, no matter what, I am never going to high-five anyone in regards to cancer.

Agreed: High Fives Reserved for Epic Moments of Wonder

Now the good news, not high fiveable (love inventing words that just seem to be needed at certain times), but quite a relief. Over the weekend, I received a letter from my Kaiser doctor, informing me that the lesion found in my kidney was indeed a benign angiomyolipoma and in need of no further treatment. If it grows out of control and continues to get bigger, that's a whole different story, but for now, it is fine and quite common and living a happy life in the suburbs of my body.

More importantly, let's deal with one major organ at a time, focusing on my liver and getting rid of the Hepatitis C. Now I can move forward with the clinical trials, although it's going to take a few weeks to get off the ground. Convincing two hospitals to communicate with each other (Kaiser and Olympia) is kinda like beholding negotiations between rhinoceros and a hippopotamus. The Rhino jostles its horn, the Hippo opens a gaping mouth and not all that much actually gets accomplished. Ultimately, everything will get done and I will continue to move forward with the provess.

Not the Easiest of Negotiations Between Hospitals - C'est La Vie!

Please forgive the multitude of pictures, but it's hard to pass up a good shot that illustrates a point I am trying to make and brings a smile to my face. This is a beautiful life, my friends, and it's sad that it often takes crisis to make us realize what we have been missing and what we truly should be grateful for. When I use the collective "we" I actually am referring to myself, but I enjoy universalizing my sentiments in a belief that they are reflective of us all. And why would anyone not want to be included in such a sentiment and in the quiet realization that beyond a society that constantly barrages us with a plague of unnecessary wants, we have everything we actually need in the palm of our souls.

Day 18 Night — Clinical Trials First Step: A Very Cool Nurse And Element Girl

Okay, as with everything in this hyper-intensified process, I perambulated today between deep spirituality and freaked-out crisis like a pinball doing the dance of life and death. My first meeting at the medical office buildings across from Olympia Medical Center for the clinical trials took place, and it was an overall positive with hints of lurking negatives. What is essential is not to fall into the either/or perspective and to understand that I am not dancing between darkness and light, good and evil, or life and death, but lingering in a vast amorphous landscape of grey. The grey offers no easy choices beyond murky fears and no quick solutions, but at least it reflects a certain truth in terms of the nature of reality and human life. There are very few mythic battles and transcendent confrontations. There are mythic hearts and transcendent laughter, and they do battle with the grim truth of everyday reality like the rest of us. Mind you, I have not forgotten that there is beauty and wonder everywhere if you look with clear eyes and open hands.

The Dream of the Mythic Battle Against Monstrous Evil

When I went into the clinical trials, I met Chris Rice, the RN who is the clinical manager of the project. Later, I will go into more details about the clinical trials, but there will be plenty of time for that in the future. Besides being incredibly positive and user-friendly (sounds like a massage with a happy ending) on the phone, Chris presented the details of the trials with precision and understandable specifics. When I went into the office today and Chris took all my medical data and history, we got along incredibly well. Since we are both huge comic book fans, it was wonderful to hear about how he is sharing Neil Gaiman's brilliant Sandman with his 15-year old daughter.

Neil Gaiman's Sandman - Facade (Death of Element Girl)

I have no kids and I have tons of comic books and baseball cards, and I always thought I would pass them down. Maybe I'll have a child in the future - being a man, the ticking clock moves a bit slower - but if I don't, I can always share them with my nephews and my niece. When Chris described watching his daughter read some of my favorite stories from Sandman, I must admit I was deeply moved by vicariously experiencing something I once dreamed of doing myself. In particular, there is one issue called Facade about the despair of the super heroine Element Girl, an eternal metamorpho created by Ra, the ancient Egyptian God of the Sun. Element Girl can change into any element at will and she is incredibly powerful, but she longs for the release of death. Since she naturally changes into any element to adapt to any situation, she does not know how to kill herself and end her overwhelming sense of being an alienated freak. She is surprised when she is unexpectedly visited by Death, one of the Endless.

Death Visits With Element Girl In Her Moment Of Despair

Element Girl is told by Death that all she has to do is ask Ra to release her from life. But how, she asks, do I find him? She is told that Ra is a Sun God so all she has to do is look into the sun and ask nicely. She walks over to the window as the dawn approaches and the sun is rising, asking Ra to free her from the burden of her powers. In a stirring moment, Ra releases her from the eternal battle and she dissipates into dust with her ashy smile blowing away on the breath of the wind. It would be wonderful to watch my child experience such a beautiful story that meant so much to me. But I feel no regret right now; only happiness that I was able to empathize so deeply with a real-life experience and story told. There is more to tell about the doctor and the looming lesion in my kidney and a questionable high five, but that shall come later because there are more days and nights coming for me. I have no desire to have Ra free me from the blessing of this life, and I shall fight to hang on with your help.

Day 17 Night - Major Decision Made, Joining New Clinical Trial in Los Angeles

I must admit that making this decision has left me somewhat drained. After an initial sense of buoyancy and excitement, I already am closing in on the tough reality of starting treatment. Since the treatment still involves Interferon and Ribavirin, the antiviral medications that work to stop the virus in your system while making you quite sick with flu-like symptoms, it is scary to say the least. In addition, I have to do a liver biopsy in the next week and any invasive procedure is frightening. But these are the consequences of my actions and of my disease, and I must face them by walking a path of courage. With a lingering tinge of fear because honesty remains a priority.

Cedars Sinai Medical Center - 8631 My Morning Destination

Let's start at the beginning of the day and move forward. Although it is past 3am in the morning and tomorrow I am getting a cat scan, I already slept for over five hours. When I got home tonight, I collapsed on the couch and fell into a a deep sleep of strange and reflective dreams. But that is another story altogether. This morning, I met with Dr. Graham Woolf, a top hematologist at Cedars Sinai medical center. After looking at all of my lab work (my viral markers — pcr 2.3 million viral lode, genotype 1a, alt 241 elevated liver enzymes showing minor inflammation, normal CVC), he discussed my treatment options.

The two FDA approved medications that have been home runs and changed the Hepatitis C playing field are Encevik and Victrellis. Approved in the last couple of years, they are protease inhibitors that prevent the spread of the virus. Since they are first generation drugs, the dosage regime remains in the evolving stages with serious side effects. Almost 70% of the people taking this drug get a serious skin rash all over their body that has to be treated with Benadryl and Cortisone. Given the nature of my skin and my tendency towards a certain itchiness here and there, I believe it would happen to me. And I simply do not want that to be part of the array of side effects that I experience. The rash is so bad that 6% of the people who do the treatment and get the rash drop out within the first couple of months. That is the first problem with today's treatment regimen.

The second problem is the vast quantity of pills that have to be taken on a daily basis, turning a patient into a walking medical cabinet. I might have my numbers slightly mixed-up so I will say that it is between 18 and 24 pills taken every day (the Encevik and the Victrellis) on different time tables (every two hours and every eight hours). The pill regimen is so intense and confusing that the doctor showed me complex charts given to te patients and told me about a new iPhone application designed to help you keep on track with the exact dosing schedule. The real danger is that if you fail to keep on track because you are exhausted and overwhelmed and sickened by the Interferon, then over a period of time, it is quite possible you will become resistant to the treatment itself. Literally, you can "X" yourself out of the process. Honestly, I am willing to roll the dice. I do not want to be a walking medicine cabinet for six months because I believe it will effect the very essence of who I am. Perhaps a logical fallacy on my part, but a lurking fear nevertheless. A bit like Binkley in Bloom County and his courteous closet of anxieties. God, how I identified with Binkley when I first read that cartoon - his passion and his fears.

Binkley and his Courteous Closet of Anxieties in Berke Breathed's Bloom County

So what is entailed in the new clinical trial as opposed to the old regimen. As opposed to 24 pills a day, it is reduced to 2 pills a day and the chance of getting a rash is reduced from 70% to 6%. Personally, I like those numbers a whole lot better. Mind you, it is a triple armed trial with 1/3 of the patients receiving a placebo, 1/3 receiving 1 placebo and 1 pill and the last 1/3 receiving 2 pills. Since it is a Phase III trial, they are trying to work out the proper optimal dosage. Doctor Woolf believes the new drug - a second generation protease inhibitor - will be approved by the FDA and be in general use by 2015. He asked me if I would rather drive a 2010 Mercedes or a 2015 Mercedes. Since I have always been a futuristic kind of guy with a bit of wishful Willy Wonka Golden Ticket thinking, I choose the 2015 Mercedes.

Okay, that is enough for now. Tomorrow, I go into Kaiser for my Cat Scan to see what the small 1.7cm by 2cm lesion is in my right kidney. But that's a whole different story and most likely, nothing to worry about. Just a bunch of fatty blood cells. Mind you, when you ask your doctor about how the Ultrasound went in regards to your liver and he tells you they found anything anywhere else, particularly in another major organ, it is less than pleasant. C'est la vie... I have faith that everything's gonna be alright. And, unlike that prophet named Bob Marley, I am completely sober today for exactly 3.5 years and off the hard drugs for well over 7 years so I have no ganja to reenforce such a perspective. Instead, all I have is the love and support of my family and friends, and my faith in the path that this universe has laid out before me.

Day 16 Night - Move Forward Without the Weight of Regret, Faith in the Great White Shark

What is the point of looking back and beating myself up over the insanity and the failures of the past? On the phone today, my father and I were talking about how terrible the summer movies were and how badly written. He wondered why I couldn't write a movie that sells and why I was not writing these huge comic book event pictures because I was a fan and discussed the possibility over twenty years ago. How did I manage to miss the boat? It was not said in a mean fashion at all, but a natural flow of the conversation. Nevertheless, the point struck a chord deep in my soul because it is a question I have asked myself.

Does such a question have any value? It brings forth the weight of regret that prevents me from moving forward. And I honestly do not have an answer; I simply wasn't that guy at that time or any other for that matter. A close acquaintance of mine wrote Elektra and two of the X-Men films and The Incredible Hulk. None of them were great films, but Zak Penn had to battle stars and studios, directors and producers in his valiant attempt to execute the original vision of those comics. The only film I would love to have had a shot at in that bunch is Elektra Assassin because it is truly one of my favorite comic series by Frank Miller. Could I have done a better job? Who knows and who cares? The past always will remain the past. Now I am in the position where I have no choice but to move forward beyond the danger of the present.

Doesn't that picture just take your breath away with an empathic mixture of awe and fear? The kayaker in South Africa is being followed by a 13-foot long Great White Shark. What choice does he have except to keep on paddling and hope for the best? I know we all have sharks and fears in our lives, and my shark today is Hepatitis C. But I choose to believe that everything will be fine if I just keep on paddling and have faith in that my great white shark today will not be my end and will choose to swim on by. If I beat myself up over the mistakes I made in the past - that one stupid night when I put a needle in my arm because I wanted to have the experience, man - I will be unable to live the present moment effectively and lovingly.

The last sentence reminds me of one of my favorite quotations about the cult of te experience from Thomas Pynchon's novel V:

"You've had all the fabulous experiences.  I wish mine would show me something." "Why," asks Benny.  "The experience, the experience. Haven't you learned?" Profane didn't have to think long.  "No." he said, "offhand I'd say I haven't learned a goddamn thing."

                                                                                    — Thomas Pynchon

Actually, there is so much I have learned from my experiences and I value without question the beauty I have seen and the sweetness I have tasted and the improvisations I have heard and the lessons I have been given. But I no longer worship at the altar of the experience, and I try my best to be a decent man today, moving forward without being paralyzed by the burden of past regrets or the chains of future fears. I choose to embrace the Great White following me in spirit while continuing to keep one step ahead. After all, it still is a shark and my momma did not raise a stupid boy. . .

Day 15 — Forgive my Silence and Here is my Breakfast of Dread

Forgive my silence over the past few days, but I have been a bit overwhelmed, indulging in self-pity and the rest of that bullshit. But it is over today and I am moving forward with a smile. Perhaps less of a smile and more of a Cheshire Cat grin or even a smirk. Both knowing and not knowing quite so much. Often we pretend to know and appear confident when the world is shaking beneath our feet.

I received a lovely message of support from my Aunt Carol this morning, and such messages mean a lot because they help vault me past my indulgent mind and into moments of taking action and moving forward. It reminded me of a poem I wrote when I was younger called Breakfast of Dread. I must admit that I love the last lines of the last two stanzas because I have to imagine my freedom and prepare to conquer with love the dead. I only stumble side-to-side, lurching with fear, but I actually can walk and move forward when I embrace the reality of faith.


So here is the poem before I venture out to a barbecue with friends...

breakfast of dread

i think that i have already

written my best poem and

it's all downhill from here.

the verb written and the noun poem

can easily be replaced

with countless growing fears.

as those among us grow older

their hopes often narrow

until they fit into a pine box.

we recognize the ridiculous.

our years few, our talents growing,

but in the flash of an eyelid,

we return suddenly whence we came,

(born astride of the grave wrote beckett)

and our great works soon forgotten.

don't pout. don't suck your lower lip.

if given the courage to face gladly

the inevitable, imagine your freedom.

eat chunks of dread for breakfast,

digest the eternal darkness and

prepare to conquer with love the dead.

Day 12 Night — Reality Comes To Visit...

When reality comes to visit, closing the door on ambition and fantasy for a while, settling down into the caffeine fueled wake-up call that this condition is here to stay and turning it into art will not make the everyday challenges go away. There has been a couple of medical updates here and there, but I'm not going to go into the details right now. Basically, in the Felix the Cat sort of way, a mixed bag of tricks to say the least.

I suppose what is most important to remember is that Felix is whistling not necessarily as he works, but as he walks down the street and handles the roller-coaster ride of life. The choice between faith and fear remain my primary alternatives. With faith, although sometimes worn out, I can struggle through the challenges, believing that one day they will come to an end. Then again, the challenges will never end. They may shed their skin and change their stripes, but they will remain present in a multitude of forms. The focus cannot be on the finish line because it remains the same for all of us. There is no other. There is no victory in the course of life that extinguishes the reality of another day.

Fear clings to the absolute, the illusion of totality. Faith embraces the journey, focusing on the precision of the next step and walking the walk of monks and lovers, children and artists. There are so many ways to realize the beauty of this life. Today I choose to walk forward and transfigure my present difficulties into a crucible that inspires realization and change.

Day 11 Afternoon — Nothing Last Night, A Bit Overwhelmed

Tired last night and today. I know there are going to be days like this. That actually was just a subconscious quotation from the Van Morrison song. I realized as the line appeared that it was a lyric to a song. Such a moment cheers me up when art reflects so directly on experience.

It's funny because when I looked up the lyrics, I see now how positive they are and how the song is all about the beauty and wonder and serenity of life. Sometimes when we are in a foul mood, we can turn even the most beautiful art into tools to express our fear and anger and downright nastiness.

Van Morrison — Days Like This

When it's not always raining
there'll be days like this
When there's noone complaining
there'll be days like this
Everything falls into phase
like the flick of a switch
Well my momma told me
there'll be days like this

When you don't need to worry
there'll be days like this
When noone's in a hurry
there'll be days like this
When you don't get betrayed
by that old Judas kiss
Oh my momma told me
there'll be days like this

When you don't need an answer
there'll be days like this
When you don't meet a chancer
there'll be days like this
When all the parts of the puzzle
start to look like they fit
Then I must remember
there'll be days like this

When everyone is upfront
and they're not playing tricks
When you don't have no freeloaders
out to get their kicks in
When it's nobody's business
the way that you wanna live
I just have to remember
there'll be days like this

When noone steps on my dreams
there'll be days like this
When people understand what I mean
there'll be days like this
When you bring out the changes
of how everything is
Well my momma told me
there'll be days like this

Oh my momma told me
there'll be days like this
Well my momma told me
there'll be days like this
Oh my momma told me
there'll be days like this
Oh my momma told me
there'll be days like this

Day 9 Night — Work Not A Burden, But A Relief

I thought there was a good chance that once I learned that I had to start treatment, I would view my work as a burden and a waste of valuable time. I mean, who the hell wants to write blogs about Tax Resolution and Human Resources when they are facing the most frightening health crisis of their life? In fact, the exact opposite has been the case. Work has become a relief and a connection to normality or as Warren G. Harding would have said, in this obscure historical reference to a President inventing a word, normalcy. By being normal, I am not threatened and I am in control of my life. Not hanging on, but holding on to the reins in a winter storm, hoping the horses know the way home.

I like the romance of the picture and the feel of the line above. If we want, we can transfigure our lives through story and metaphor and image, turning our lives into an expression of art. Yes, I want my life to be normal, but I can elevate the normal and see the beauty and wonder in the daily encounters with my community and this world. Why not use a crisis as motivation to transform life into art? In essence, I believe the reason that we have an awareness of our mortality is so we can become decent and good despite the knowledge of a coming end. I am here to get rid of my bullshit and my fear and my ego and become an expression of God on earth by realizing my authentic self. Whatever is divine has no expectations of us beyond the freedom of being comfortable in our skin and being ourselves. That, my friends, is more than enough and that is what I believe.

I do not need the normal to be a dream. I do not need to transform my everyday existence into the fantastic visions of Christopher Nolan's Inception. I enjoy the fantastic in my movies and my books, but I do not need to pretend that it will happen tomorrow. It is a miracle enough that the sun rises and I am given the grace of another day on this planet. Not in the sense of a fear of death of any looming mortality, but more along the lines of the rare gift of this human birth and this beautiful life. Do we really need super powers or to be mutants or so much more than what has been given to us? No, without question, there is more than enough potential and possibility in this world to satisfy any human soul.

Thank God for the gift of imagination and the access it provides to wonder and fantasy. But this is enough and it does not have to affect the laws of everyday reality, the basic rules of thermodynamics and  the theory of relativity and so forth. Quantum dreams and interstellar visions rock! But today, I choose to discover the beauty and the wonder that waits and breathes and looms in my true reality. Then again, we could dive into a discussion of possession and subjectivity, but it is late and this is a bit silly.

I don't know if I could survive this challenge without the blessing of laughter and the gift of being able to laugh at myself. Silly boy, you strut and postulate and still this world receives you with open arms.