Of all artists creating self-portraits, Rembrandt was the most prolific.

Painting self-portraits is an introspective and honest process often painted as a personal, spiritual and artistic recreation. This is not a narcissistic endeavor, but one of self-examination, self-awareness and understanding. The finished painting reflects ones spirit at that sitting.

When I look into a mirror and have a dialog, it becomes apparent that the subject being reflected is one who demands and deserves complete honesty. I look into the mirror at myself until the image reflected becomes strangely unfamiliar and new. Extended periods of mirror gazing creates a dialog with oneself and it becomes clear that the only person one cannot lie to is ones self, of course, unless one is insane. Some of my most significant moments of clarity come from looking in a mirror. It is often an act of personal reconciliation, refreshed self-recognition, social respite, self-scrutiny and personal adjudication, or just fun.

The variety of self-portrait examples that I am exhibiting shows my various moods and changing physical characteristics. The essence my work in self-portraiture is character portrayal rather than exact likeness; it is a perception rather than depiction. In viewing many of an artist's self-portrait paintings at once, one gets a glimpse of the dynamic breadth of another's emotions and how the feelings manifest graphically through facial physiology and then is translated through the artist's mind and hand using composition, design elements, color, brushwork and more.

Each self-portrait mines some character aspect inherent in the subject and each self-revelation shows this dynamic range of changing emotions. Often the facial expression painted begs for wardrobe or gesture, so I take the liberty to add what I want to fully express myself; some portraits are happy, some are sad, some are ugly. Self-portraits are the most personal kind of artistic expression is brutally honest, unforgiving, revealing, self-referencing, frustrating, joyful, and/or uncomfortably objective.

As an aspect of my self-growth work, I paint to see and dredge more deeply into myself than the reflected mirror image. When emotions are tied to creative expression my current state of being is revealed often surprisingly in the way I portray myself. The face becomes a conduit to the soul, powerful, and eloquent. My character, personality and many moods always serve to inspire my creativity, restore my balance, and lighten my existential journey.

The subject-self is cooperative and understands the creative process. I am always available to model for myself. And of course the modeling fee is reasonable!

Here are some thoughts that resonate with me regarding my exploration. I do find joy in my artistry, but also use the power of artistic expression to peel the layers of my psyche’s “onion.” In my examination I find and believe that the “Unexamined life is not worth living” (Socratic). For Socrates human Being is marked by the capacity to transcend instinct and desire and to make conscious, ethical choices. If I am guilty of navel gazing to improve (medicine) and pacify (distraction) my life then so be it, it’s my navel and my life.

"Art, of course, is a way of thinking, a way of mining reality. Art begins in a wound, an imperfection—a wound inherent in the nature of life itself—and is an attempt either to learn to live with the wound or to heal it. It is the pain of the wound that impels the artist to do his work, and it is the universality of woundedness in the human condition that makes the work of art significant as medicine or distraction. The wound may take any number of forms: Doubt about one's parentage, fear that one is a fool or freak, the crippling effect of psychological trauma or the potentially crippling effect of alienation from the society in which one feels at home, whether or not any such society really exists outside the fantasy of the artist." —John W. Gardner

My current work expresses feelings and experiences I had as a quadriplegic in rehab. I spend many months learning to function again. My recuperation was mediated by the extent to which I could physically preform. As my nerves grew back I was able to do more. It was a long frustrating endeavor. I learned to have patience and compassion for my self and others.

The experiences I had were those of my own challenge as well as those of others. I call this referred trauma where one deals with the underpinnings of ones own trauma and the effects of trauma on others. In the presence of others learning to cope with their own limitations is a rich ground for the discovery, development and refinement of ones survival skill set.

How painting self-portraits helped me find myself. Excerpts for the painter/author’s book I want to share what I learned during my journey on the long path back to balance from loss, trauma and physical disability. This is for those who have been given a huge challenge, recognize an opportunity for personal growth and are struggling to move forward with courage. I am one of the lucky ones. I was able to prevail over my challenge. To me, this means that I have done the deep work that allows me to live happily and appreciate what I have with authentic gratitude. During my difficult recovery back from total paralysis, I’ve discovered answers to many of the questions I faced that I want to share with you.

Much of my development after trauma came from doing my art, which gave me another way to express and learn about myself. I created all of the illustrations in this book. Most important among them are the self-portraits on the cover painted over several years representing my many different moods and characters. These images, some of several hundred self-portraits I’ve done, depict me in different guises and embrace the imperfect humanity of my face. By painting myself as a variety of characters, I created a way to literally face myself in all my varied aspects, as I struggled through the trauma of disability and evolved into what I hope is a more integrated being.

Who are you really? When we are children we look up to certain people who represent qualities we find worthy and respectable. We are asked, “What do you want to be when you grow up?” We start with heroic figures, and with maturity we refine our vision of ourselves to align with our native talents and what ever gives us a sense of self-worth. I could have been any of the characters on the cover: a priest, cowboy, construction worker, banker, shaman, or others. But from the time we are children, we determine who we want to become, and we do it by choice. This effort is about not falling prey to a negative self-concept after trauma. It is about redefining how you see yourself, how to take your personal challenge and learn the valuable embedded lesson it may offer. I evolved as a person because I was made aware that I could be a better me after being stripped of my limited ideas of myself. I was given an opportunity to renew and rebrand myself – to live from a deeper and evolving image of who I am.

INTRODUCTION: THERE’S NO SILVER BULLET When I became disabled as a quadriplegic, it was a devastating change for me. I was 42 and my life’s path took an abrupt turn into uncharted, painful-to-navigate physical, emotional, psychological and spiritual territories. I felt the shock most initially when I went into convulsions and was admitted to the Emergency Room. I had no idea what was happening in my body. I was smart and aware enough to read the faces and energy of the attending physicians. I was an out of the ordinary admittance. When I was diagnosed with GBS, I felt my life spin out of my control. Fear was at the forefront of everything. I didn’t know if I would recover from my paralysis and lead a normal active life ever again.

Guillain-Barré syndrome (GBS) is a rare disorder in which a person’s own immune system damages their nerve cells, causing muscle weakness and paralysis. GBS can cause symptoms that last for a few weeks. Most people recover fully from GBS, but some people have permanent nerve damage. In very rare cases, people have died of GBS, usually from difficulty breathing. In the United States, for example, an estimated 3,000 to 6,000 people develop GBS each year on average.

Many things can cause GBS. About two-thirds of people who develop GBS symptoms do so several days or weeks after they have been sick with diarrhea or a respiratory illness. Infection with the bacterium Campylobacter jejuni is one of the most common risk factors for GBS. Most cases of Campylobacter jejuni come from handling or ingesting raw or undercooked poultry meat. Although poultry and other birds are not affected by the bacterium, other animals can be. Therefore it is possible for a person to acquire the infection from contact with infected stool of an ill cat or dog. People also can develop GBS after having the flu or other infections, such as cytomegalovirus and Epstein Barr virus. On very rare occasions, they may develop GBS in the days or weeks after getting a vaccination.

Though it was too soon to guess at what the future might hold for me, I knew I had to overcome my fear of being a quadriplegic in the present. This experience was a monumental change for me on all levels of my life experience. I had degenerated from a highly functioning manager into a devastated being beholden to others for my every need. I decided that a positive attitude would be a better mental environment for any fears I had about something that I could not control. My positive attitude served me well and provided me with hope – a hope that I would be OK. I had heard reports at both ends of the Guillain–Barré Syndrome prognosis spectrum. Some patients simply got better, some died, and others were in a variety of degrees of healing. Some played golf again; some were in a wheelchair forever. All I could really do was to rise above my fear and be hopeful.

I believe the growth, healing and recovery depend on you, and you alone. If you can find someone who loves you, whether a family member or a friend, it will help you along your path. It has been over thirty years since I was stricken by Guillain-Barré Syndrome, and I have learned that it is up to me to make the best of my situation. I will never be the same as I was before, and, frankly, I like the new me a whole lot better. My experience helped me to slow down, look at myself, stop comparing myself to others and really reinvent myself from scratch. I believe that this was an opportunity for me to become compassionate and find more authentic experiences in my life, experiences that would have been lost to the former me. I would say that if you are reading this book, you are on your way to achieving the right mindset for emotional healing. Also, if you have a loved one who is being challenged and is lucky enough to have you as a partner, then you can use these ideas to help them along their path of physical recuperation and regeneration of spirit and mind.

One of my most treasured gems of personal growth was that of developing a “witness consciousness.” It has allowed me the wisdom and grace to engage pain at a level that would have been impossible for me before my journey into my better self. This consciousness was born by my near death experience. When I found myself looking down on my physical body lying on the hospital bed, I became clearly aware of the separation of my mind and my body. This insight revealed how I could view myself from a higher plane. The witness consciousness provides us with a way to see ourselves objectively in context, and brings to the situation rationality, distance, and balance. This gives us an opportunity to be non-reactionary and wise. My trauma made me a better, more lovable man. This disease happened to me by accident, there is no blame, no defining moment, no fickle finger of fate that transformed me into the “other” on life’s stage. I have let go of riding my bike in the spring mountain air, playing beach volleyball with tanned and fit buddies, and carrying my lover to our bed for lovemaking, and I count it as a blessing that I did not die.

After I was physically able to write again, I started to keep personal journals about my feelings and experiences. It was a way for me to share my feelings and insights with my later self. It was a place I could go to say anything I wanted to without fear of misunderstanding or reprisal. In many ways it was a good way to download feelings without any systematic obligation; I did it for no reason other than that of free self-expression. Occasionally I would go back and read some pages that reminded me of a present entry I was making. It was then that I discovered my personal behavioral patterns.

One New Year’s Eve I had several invitations to join friends to hail in the New Year, but I declined. I decided to have a more conscious, introspective version of the celebration. It was a time to celebrate the blessings, tests and lessons of the previous year as well as the potential for success and happiness in the next. I wanted to celebrate consciously, through the night and into the next day. That year my celebration was a solo flight, and I went to bed at three in the morning. This writing is a byproduct of many insights, years of journaling, personal growth and that New Year’s evening that I chose to spend by myself rather than with friends. I was faced with two things that were changing and challenging me. I had recently self published my poetry book, In Memoriam Innocentium, a collection of prose and poetry about love, loss, disability, and spiritual healing, and was accepting the dissolution and finalization of my third marriage. It was time for me to take a really good look at myself in the mirror. As you read this book perhaps you can do the same and take a few ideas with you that will become tools to rebuild your personal joy and start to honor yourself again, or perhaps for the first time.

Whether you are sitting alone now in an empty home recently vacated by your beloved, or lying on your back at the dawn of a new life situation after an accident or disease, or simply wondering what to do with your unfulfilled self, I believe that there are some things I can share with you. I’d like to help you find some clarity and peace of mind ... maybe even happiness. I am not saying that I have it completely together, but I do have enough clarity to see others struggling with some of the same challenges I have prevailed over. Be it karma, cosmic chaos, optimistic innocence or the ultimate fruits of selfishness or dishonesty, these lessons have been experienced, studied and learned by me. Though there are days when I come close to making some of the same old mistakes, I am able to catch myself at the first untaken step toward self-generated pain and unhappiness.

AN OMEN FROM THE FUTURE On a Monday morning I left for work at 6:45, which would put me in Santa Clara at 8 a.m. As I drove down the hill from home, I noticed a disabled person who had fallen and become entangled in a patch of ivy. I had a clear view of him as he frantically waved at me to help him get up and untangle him from his snare. I looked at him indifferently and drove on. My thought was that I was sure someone else would come along at any moment and they could rescue him, plus I was wearing a new Italian suit and expensive Italian shoes that I didn’t want to get dirty or scuffed up. In short, I chose to do nothing.

The image of his face looking at me imploringly with his free hand beckoning to me is burned into my mind to this day. It kept appearing and reappearing during my commute and distracted me at work. I started to think about how little time and effort it would have cost me to stop and extricate him. The image reminded me of the scene in the film Moby Dick where Captain Ahab had finally harpooned the great white whale. Ahab had been pulled into the sea by the harpoon line which had trapped him against the body of the whale as it dived deep into the water. As the whale re-surfaced, dead Ahab’s one free arm could be seen repeatedly flapping back and forth as if to beckon for help.

On some deep level betraying my own basic humanity when I deliberately failed to help that man had traumatized me. The image of that young disabled fellow returned time and again that night and more again into the next day. A few days later I came down with a bad cold. I had no idea that just a few days later I would be completely paralyzed as a quadriplegic.

My story. On the morning of March 1, 1984, I was due to fly to Los Angeles to review concepts for the National Semiconductor Corporation’s annual report. At about 3 a.m., I woke up because I needed to go to the bathroom. I was sleeping comfortably without any forewarning of physical problems. But, when I got out of bed I noticed I was very dizzy. I returned to bed and slept until my alarm went off at 6 a.m. As I attempted to get up the dizziness increased three fold, and I could not stand without assistance. I noticed that rather than being energetic I felt my energy sapped. Something was wrong. I thought I must have been having a mild relapse of the flu. I asked Susie to please call my doctor’s office, and she made an appointment for 11.

We discovered I was even too weak to dress myself and my lack of balance was now accompanied by disorientation. As Susie dressed me I got my first wave of fear. I had never felt like that before. The closest feeling was like being spun around and around until I was staggeringly dizzy. The world was spinning all around me as I tried to walk, then there was nausea and more fear. She and I lay on the bed and waited for the appointment time. When I started to feel worse, we decided that we should eat and then go to the Emergency Room. As I attempted to go upstairs from the master bedroom to the kitchen, I went into convulsions. I fell to the floor, and struck my head on the wall on the way down. I remember feeling the cold marble of the entryway floor on my back as I began to lose consciousness. Susie called 911 and the paramedics arrived shortly. I don’t recall the trip to the ER. I already was in trauma and slipping in and out of consciousness.

The attending ER physician immediately commenced the process of diagnosis with a complete blood panel. I remember a tingling feeling in my right toes. This was the beginning of a long, painful and arduous journey. I didn’t now that I would never be the same after that morning. Symptoms of Guillain-Barré Syndrome are first noticed as numbness, tingling, pain and weakness. I had all the initial symptoms. At first this is usually in the toes and feet, eventually moving up the body as an ascending paralysis. I felt this bilaterally with accompanying numbness mostly in my lower extremities, but the local neurologists did not initially or speedily confirm the diagnosis of Guillain-Barré Syndrome.

The experience of these first symptoms was extreme as I felt I was being helplessly carried on a piece of wreckage of myself. Time flowed painfully on that morning, and by the afternoon, I had lost my ability to lift my arms off the bed. My feelings ranged from panic and fear to a deep sense of dread and disappointment. Even though I was supposed to be in Los Angeles on business to direct the most important project I had worked on to date, I didn’t care. My job had suddenly become insignificant. I was caught up in a new, foreign culture of sterility, attending physicians, medical staff, monitoring devices and the jarring cacophony of hospital sounds.

My wife was strong and confident during this process. She was stepping up and doing all she could to allay my fears when she had deep dread of her own. She didn’t leave my side for a minute during the whole ordeal. It was an example of one giving from a place of love and generosity in the most dire of times. I could see it was breaking her heart to see me suffering.

For myself and for Susie, I tried to move, I couldn’t. The experience was like twilight sleep when one is half awake, trying to move or yell but the body doesn’t respond. This disconnect was now my waking reality. I wanted to move, the signals were attempting to go from my brain to my muscles, but nothing was happening. The disease had destroyed my motor nerves and no neurological signals were connecting. For the first time in my life my body was inert, involuntarily grounded by the forces of gravity now stronger than me.

I was not getting any information from the neurologists who had come to examine and test me. They tested my reflexes, did a sharp point test and ran a little wheel with pinpoints on it to determine if I could feel. This was a test that I would undergo many times in the months ahead.

I didn’t know enough about my condition to have rational thoughts about what was happening to me. I learned that the doctors felt the same way; they were mystified about my condition. The attending neurologist said they couldn’t learn any more about my illness until they performed a spinal tap. The fact that the doctors did not know what was wrong gave me a jolt of fear that served to push my hope and spirit down even lower than it already had been. It was at that moment that my wife Susie and I realized I was fighting for my life.

Instead, the neurologist told me the problem was in my spine. In a fetal position I felt a large spinal tap needle penetrate deeply into my back. Then after waiting for hours for an analysis of the spinal fluid, the neurologist was not sure enough to make a solid diagnosis. When he initially said “spine,” I had a deep sinking feeling that I was involved in a mortal struggle. Fear struck me in the heart like never before. During this acute destructive neurological phase I was given periodic tests with a spirometer to determine the function of my lungs. This was called a PFT or pulmonary function test. It measured the volume and speed of air inhaled and exhaled. As the various tests were given to me they revealed how seriously ill I was.

My emotional and psychological state was tested as well. The greatest concern then was that if I lost lung function, I would be a candidate for a tracheotomy. If my lungs failed they would cut a hole in my windpipe and put me on a ventilator. Fortunately, I passed the PFT— I learned that I had a grand lung capacity from diving, swimming and playing the trombone for many years. I was extremely relieved to not have to endure choking, suction treatments and everything else connected with a tracheotomy. I didn’t know it, but my wife Susie was told to get the family in to see me within 48 hours, essentially to say goodbye. The priest at the hospital gave me the “Sacrament of the Sick” or the “Last Rights.” This sacrament is administered both to the dying and to those who are gravely ill or are about to undergo a serious operation, for the recovery of their health and for spiritual strength.

After only three days in the hospital, I was completely paralyzed, had lost bladder and bowel control, and could only slightly move my head. Later I was fitted with a blowpipe so that when I blew on it a light would come on at the nurses’ station. By this time the pain in my head had reached the point where my eyes ached and my head felt like it was splitting open. My back felt like I had a hatchet buried in my spine from which a searing pain migrated up and down. The lack of motion caused sharp, painful pinpricks over my entire body. My limbs became hypersensitive, and I would cry out if I were touched anywhere but on my joints. In order to lessen my pain, Susie and the nurses would move my body and give me range of motion treatments. This was done for three days and nights continuously. I had to be turned every two hours so the weight of my body wouldn’t break down my skin. I wanted so badly to move but couldn’t. My wife was dedicated to me through my ordeal and she proved her love for me over and over.

I tried to cover up my pain and fear with humor—an act of survival. What I was really thinking was how could this have happened to me. The degree of the unknown at that time compared to today was great. Information was not readily available on the Internet and there was no Wikipedia. Deep down I was feeling the darkness of extinction. My awareness level was as acute as it could be and so I easily read the worrisome facial expressions and body language of those around me. Every sense I had became sharper as I teetered on the precarious edge of my life. I was scared to death and my way to do my part for those loved ones who were suffering with me was to lighten the situation with humor where I could find it. It was a type of cynical, witless and fatalistic humor. As I languished in ER, it was hard to take anything seriously, because I could see my own death. There was nothing funny about being ravaged by this disease. I knew it, and my family knew it.

I remained in this dreadful state without a definitive diagnosis for two weeks. Finally, I was tentatively diagnosed as having both post-infectious encephalomyelitis and Guillain-Barré syndrome. My two neurologists could not agree on which one it was.

A PAINFUL RE-BIRTH I was told that there was nothing more they could do for me at the Dominican Hospital in Santa Cruz, so, at the urging of my then brother-in-law, Ronald Dunton, I was admitted to University of California Hospital in San Francisco. There I underwent a series of blood purification treatments called plasmapheresis. The idea behind this then new treatment was simple: instead of trying to suppress the immune system with powerful medication alone, autoantibodies were mechanically removed from my blood during a process similar to dialysis treatment. The procedure later became known as plasmapheresis, or plasma separation and plasma exchange.

At night in my hospital bed, after hours of plasma exchange treatment, I felt a peaceful yet odd sensation I had never experienced before. I first realized it when I felt and sensed myself looking down at myself in my hospital bed. I felt myself in and out of my body at the same time. There were two parts of me that were being drawn subtly apart. I can only describe the feeling as something like looking through an old-fashioned single lens reflex camera, when the image in the lens is divided so that one may adjust the lens and bring the image into focus. I realized later that I was having an inner dialog with myself. I was deciding whether to let my mind and body separate or to bring the strange sense of duality I was experiencing back into focus. It may have been a dream, but I don’t think so because it was so very powerful. For the first time in my life it allowed me to sense a real defining line between the physical and spiritual worlds. This near-death experience revealed to me the duality of my being and birthed my witness consciousness.

At that time I didn’t know if I was going to live or die. I hadn’t eaten in over a week; I couldn’t swallow. I had lost weight and was going slightly mad. As I was lying in the hospital bed I could hear the cries of other patients’ praying, groaning and the general madness in the hospital throughout the nights. Day after day I would grow more accustomed to the rhythm of the hospital. I learned the codes for various emergencies and for patients who had died. I had family members and friends visit me. Also, an outreach group ministered to my spiritual needs and many people came in to pray for me. What I was struck by the most was the confidence of people who were trusting in God that I would be OK. My brother Mark, a spiritual man, made audio tapes for me, he read from his Bible, and selected verses that had been a help to him.

ON TO REHAB AND MY FUTURE After about a month, I had lost more than 50 pounds, I couldn’t sleep at night and only catnapped during the day. I was hypersensitive to everything. The smallest itch I could not scratch would become a consuming, burrowing pain. I decided to try to deal with the pain by disassociating myself from it.

I was transferred from UCSF Hospital to Ralph K. Davies, a rehabilitation hospital in San Francisco where I would stay for five months. I tried to have faith, be patient and hopeful. I prayed as each day crawled by slowly. There were times it seemed as if the clock had stopped running. But I seriously worked at my therapy. During the time at the rehab hospital, I had a group of Christian brothers lay their hands on me for a healing. The power of their prayers and the faith they displayed convinced me that soon I would just get right up out of bed and head for home. I was wrong. Nothing happened. I lay there paralyzed, unable to move anything. After months, I could only shrug a shoulder slightly.

It takes time to heal, and sometimes if the healing doesn’t happen a hoped, we are left scarred or disfigured. In my case, my legs and arms and intrinsic hand muscles are permanently atrophied due to neurological damage. On one level, I am angry about it, perhaps on a deeper level I am just grateful it is not worse.

I was angry that the disease happened to me and there was no logical or rational reason why. I was told what might have caused it, but it was all supposition. I found that the path of anger I was going down was much like the path of jealousy. The feelings and thoughts seemed to feed on themselves, leading to more and more intense emotions. Paying attention to what triggered my anger eventually helped me cope. There was a feeling of injustice that this happened to me. I was a good guy, why couldn’t this have happened to a lesser person? I wondered if there were acts I had committed to deserve this? I didn’t think so; I still don’t. The damage to my nerves had been done. I didn’t know if I would ever heal, time would have to tell. In the meantime, I was trapped in a state of sadness, and if I dwelled on the injustice of my situation, I would erupt in anger.

I was often frustrated, particularly when I realized how dependent I was on others for so many aspects of my life. For example, I needed to be turned in my hospital bed so that I wouldn’t get bedsores. I appreciated the help and I think this kept some of my anger at bay. Frustration was going to be a big part of my life now and I realized that I had to adapt to it to survive. Anger and frustration can lead to aggressive behavior. This is usually expressed in a safe zone with loved ones. This can destroy relationships. I saw this acted out over and over again by other patients and I swore to myself I would never be like that.

If we can be heads up enough to sit with our feelings and understand the root cause of our emotions before expressing them, then we can manage anger. We can harness anger to try harder and to develop patience. When I compare myself now to where I was in the acute phase of my illness and early on in my rehabilitation, I am better and that is a positive thing. I learned that comparing myself physically to what I was like before the onset of my disease was foolish and a recipe for emotional destruction.

I was so shocked with the suddenness of my situation it was hard to believe. But like any other enduring situation, one cannot help but develop a new sense of reality. At various stages of recovery you will stop and have a reality check. In those moments, you will perceive yourself objectively. That is the time to get basic with yourself and appreciate your advancement, no matter how small and incremental. I learned to be patient, with my lot in life and with those people around me who deserved it by stopping to appreciate and give myself credit for even the smallest improvement.

I think a small amount of denial is OK. Denial is natural, but it is also dangerous. It is detrimental to our openness to experience and to the good that may come to us through this tribulation. Denial will rob us of hope and hope is everything. Don’t extinguish your hope. Maintain your positive mindset. The fact that you may be yearning for a miracle is not a bad thing, that is a natural expression of hope. It helps us to move forward and hopefully to find balance during this healing episode. If you decide to dwell in denial, your payoff will be negative physical and psychological symptoms like fatigue, headaches, digestive and internal problems. I experienced all of these myself when I was in denial. This does not embarrass me as I have learned it is an incremental and healthy step to healing and acceptance.

Sometimes at night when I look at my hands I still can’t believe that this has happened to me, and my mind drifts back to that morning so long ago when I turned an indifferent eye to a disabled man who had fallen down. I see him waving to me, and, as I do, I see and feel myself in his position after falling. That man was me. I just didn’t realize it at the time.

Prevailing over denial will yield you the gift of independence and decisiveness. Be open to the unique experience you have been given, as it will define the difference between being handicapped by your experience or propelled to a higher level of consciousness and self-acceptance. If you don’t let denial rob you of it, then you will always have potential.

LOSS OF INNOCENCE: SELF-PRESERVATION AND THE NEW SELF "I find hope in the darkest of days, and focus in the brightest. I do not judge the universe" –Dali Lama Coming to terms with your disability means losing your innocence. It is a right of passage and an initiation into a new and higher level of awareness and sensitivity. While in the initiation process the moment-to-moment unfolding of events requires one to rely on one’s self, measure the situation carefully, get information and safely guide the self through obstacles as they present themselves.

There is no ritual rights-of-passage in our culture. Initiation is more influential than a clearly defined event like a Jewish Bar Mitzvah. So as innocents we are left to ferret out and learn from those events that seem most meaningful and life changing. Our first love, first kiss, first heartbreak, a driver’s license, graduation, first sexual experience, turning twenty one, getting fired, marriage, divorce, and so on, are all events that help us define our sense of maturation, belonging and being. In some tribal cultures there is a trajectory for coming of age. A boy is separated from his mother at an predetermined age, and brought into the company of men for the first time for a defined series of challenges, each designed and tempered to define the initiates new self awareness, self-concept and social stature. Coping with disability is just another type of initiation.

OPERATING FROM YOUR ADULT, NOT YOUR CHILD When we are thrown to the wolves of fate, we prevail or capitulate. If I was going to survive GBS, I needed to pay attention. This fact was demonstrated perfectly to me early on when in the local hospital. Two elderly “Candy Striper” volunteers accidentally dropped me on the hospital floor while attempting to transfer me to a gurney from my hospital bed. A part of me realized that I was not safe when the ladies were transferring me. All they were doing was changing the bedding, but they had decided to take me out of the bed, rather than the normal process of rolling the patient to one side, changing the sheet, then rolling the patient to the clean side and changing the other half of the bed. I should have said “no,” but I didn’t. I never reported the incident and although the staff knew about the incident, they said nothing to me. I still have back pain to remind me that I should have followed my initial instincts. I was initiated by default with that experience, one of many degrees of my initiation process.

Learning to trust myself and not to simply accept the process was important in my new situation. It was confusing, painful, scary and a real-time survival learning experience. My thoughts were, “This is not a dream, it is happening to me, it is dangerous and I need to step up for myself preservation. Could this be a gift in disguise?” Previously I had felt like pinball, but now as experiences presented themselves, I chose not to simply allow myself to bounce off the challenge, but to pay attention and engage at a survival level. This was an initiation into a heightened way of being more present.

I recall lying on my hospital bed after the initial flurry surrounding the acute phase of my disease. My physicians choreographed everything for me during this initial phase. I felt my mind was relegated to the role of going along for a ride in my disconnected body. It was a feeling of disintegration, of being out of control and helpless in the face of so much “help”.

At night I felt a kind of forced isolation. When my body was put to rest at the end of the day, thoughts of my new reality surfaced and occupied my mind. I had come to a crossroads in my life – a point when my existence as I knew it needed to die. With that death a new being would be formed through a purification process. I was being initiated into a new and higher consciousness. The shift from acute to chronic illness signaled a change from being cared for to self-care.

The most basic example I can share is when I discovered I was not drinking enough water, and I learned this the hard way by developing the most painful bout of constipation one can imagine. It was almost metaphoric as I was accepting everything and expressing nothing. I was not taking care of my most basic need, that of being aware of my body. In the beginning, when I was lying completely paralyzed in my hospital bed in severe pain for days on end, I did not go to the bathroom for more than a week. The massive amounts of pain meds had paralyzed my gastrointestinal tract and I was now paying the price. In my suffering, I was in a drug-induced haze and had not been paying attention to myself and my natural needs. I knew that I had been eating more, actually as much as I needed to, but what I didn’t know was that I wasn’t drinking enough fluids.

I was bound to have some type of major negative gastrointestinal episode; I had simply abdicated my biological needs to the care of the physicians and hospital staff. In the throws of really severe pain, I realized that the healing was to come from being aware of my own needs and acting to get them met by those who had charge of me. It was an epiphany caused by my lower GI track! It was going to be up to me to navigate through the labyrinth of my recovery process by sheer self-awareness and heightened conscious self-care. There was no neglect except what was caused by a lack of awareness on my part. It was at that point that I grew up totally; I realized that I held the tiller of my recovery and, for that matter, my life. That epiphany was life changing as it propelled me toward a full sense of responsibility for myself, even in my disabled state.

This meant that I was faced with giving up that pure, simple and naive part of me that functioned as an innocent kid. For me, this was not an easy thing to do. Part of being a good and creative artist is the ability to maintain a childlike take on life. The artist often takes the outsider’s view, one of being out of the mainstream in order to view the goings on of life and report on them. Much like being a comedian who maintains a distanced perspective on life so that they can comment on it humorously, the artist comments artistically. It is also this childlike take on things, I believe, that allows us to abstract reality enough to be able to find humor, beauty, joy and uniqueness in the world, and report on it creatively in a way that is fresh and uniquely personal.

In short, maintaining this childlike view is of real value. What doesn’t work, and is quite different, is a childish view of things. This distinction is sometimes difficult to make. It is easy to blur the line between childlike perception and childish acceptance of the goings on around us. Everyone, regardless of whether you have an artistic temperament, shares this difficulty.

When my pink-clouded perception of childishness was stripped away by trauma, the force of raw realty was life changing. It was a breakdown of everything I knew to be true; I was left unprotected and vulnerable to the tragedy playing out in my life. There are times in life when we find ourselves on paths that are not of our own choosing. There are philosophers that say we create everything in our lives and through our thoughts, emotions and desire – the laws of attraction - we bring disaster to ourselves. To me that belief flies in the face of logic. There are many things we draw to ourselves, but the jury is still out with regard to understanding cosmic chaos. It doesn’t augur well in my mind to put all the responsibility on the victim. That seems to be a shortsighted blame-the-victim mentality. I have a hard time accepting it. What we can do is to take our mitigated assets after the trauma, collect ourselves and move heroically into the future.

IT’S A MINDSET Feeling sorry for one’s self is to be expected up to a point, but when there is no more new information and you are not using time for self discovery and healing, then it is no longer productive. It is then we can develop a mantra of “poor me” and get stuck. Being needless and “want-less” is a paralyzing state of mind. There is nothing that can really open up the possibility of progress like setting a goal, even a small goal. It is what moves us, energizes us and pulls us forward. An amazing amount can be accomplished when we have a goal. I believe the degree of happiness we experience is directly related to the quality of our goals. Usually the goals that we choose and which define our energetic motivation are ones that are not self-serving. However, my goal of healing was self-serving.

My initial goal set was to stay positive, chose to stay present and to realize I was very ill and not get lulled into complacency and acceptance of my circumstances. I wanted to learn as much as I could about my situation and put real energy and understanding into my recuperation. Goal setting was important; it helped me see my progress. I decided one of my simple goals was to outperform myself when it came time to do any kind of physical therapy. Also it was important to give myself credit.

This goal-oriented life choice is logarithmic, building on itself, gaining mass and expanding to others, serving to fill them with purpose and joy as well. Getting “unstuck” is hard work and starts with time spent in quiet, focused thought. There are plenty of welcome distractions to keep us off balance, offering us serial short-term fixes to our emptiness. For instance, entertainment empires are built on distracting us from healthy, introspective and nurturing thoughts. The real healing work begins when you tune into yourself and your needs.

The loss of innocence is an opportunity for a breakthrough in perception. It is like being held under a cold shower, gasping for breath, trying to adjust to the discomfort of a new unsettling reality. It may be brutal and there are many examples. When innocence is lost before the age of reason it can cause permanent psychological damage. If lost after the age of reason, the loss and damage can be rationalized later in life and dealt with perhaps with some awareness, clarity and deep work. The wake up call comes as an abrupt change in a person’s daily routine. In my case, I was living in a bubble and insulated from forced introspection. My innocence was based on a thought that I was immune from the kind of issues the challenged people had. I couldn’t relate to being pulled out of the comfort zone of my life as I knew it.

We tend to fall naturally into ways of thinking, feeling, and being/doing. We all develop comfortable patterns within these three life elements. But essentially, we are really sleepwalking through life by following our unconscious thoughts. I recall while being at a very cool party in the Corralitos Hills, full of artists, poets, writers, Zen practitioners, stoners, trekkers, sailors, and musicians (my crowd!), I had a conversation with a fellow who was a Buddhist. He said, “We go through life like we are taking a shower. We adjust the temperature of our thinking, feeling and doing. If we find ourselves thinking about something that is unpleasant, then we find a distraction to occupy our thoughts in that moment.” This act is like adjusting the water in the shower so it’s not too hot, or too cold.

When we find our feelings are causing us pain or distress we find something to alter our state of feeling. Some turn to mind-altering substances, but the majority just gets lost in human doing rather than in human being. This can mean occupying ourselves with mindless activity – the art of staying unconscious by adjusting these three elements in order to be distracted from our inner stuff by outer stuff. We seek a comfort zone in this pattern of coping with our day-to-day life whether we are happy or unhappy. Patterning is a natural thing to do. So, perhaps it is unnatural to be satisfied and complacent. Maybe the only way to truly grow is to be re-birthed and spanked into life through trauma.