No More Waiting to Die

Houston, Texas, USA

June 2011

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The walls were a sickly off-white color and the worn tile floor waxed and shiny yet still appeared dirty, the fresh wax not able to hide its scars, but it was the oppressive smell that oppressed him the most. A mixture of sickness, medicine, body odor and over-used cleaning products had created a pungency in the hospital’s stagnant air. Made him impatient. Didn’t matter though. If it was one thing he was good at it was ignoring unpleasantness. Doing that for nearly 50 years. He put his hand to his chin, unsettled, a thought ruminating down the corridors of is mind. What is life without a dream pursued? A filling in. A bypassing of time. A test of patience until the next phase begins. Endurance he thought. Without pursuing his dream in was simply endurance. The excruciating ache of waiting.

Mr. Noble? At least the doctor had some idea of what his symptoms meant. Didn’t remember how many he had seen.

Noble nodded. Just give me some medication; there’s a cure for everything these days.

From the last round of tests we’ve been able to pinpoint the problem. It was the doctor’s eyes that made him put down the Horse & Country magazine. The inflammation and discoloration, and the stiffness and pain are the symptoms of a rare disease called Scleroderma. Like a master Buddhist he showed no reaction.

Scleroderma. Derma. Something to do with the skin? But what about the hardening of my fingers and the swelling? The doctor, whose name he had already forgotten, nodded.

It is a systemic anti-immune disease that characteristically affects the hands, arms and face.

No matter what tricks of the mind or skill of ignoring employed, he knew at that moment that this was exactly what he had. Ran his finger over an elongated spot below the skin on his cheek that was hardened, like a long island of semi-hard rock.

He nodded.

There are two types and I’m rather sure, due to your shortness of breath and the increased heart rate you have described, as well as your description of the difference in the color of your urine and whatnot, that you have what is called Diffuse Systemic Scleroderma. Unfortunately there are no known cures.

The silence that followed was a flurry of random thoughts: Damn it there has to be a cure! No cure? Fuck it. Carpal Tunnel yeah sure. Major elbow by God. It means no more work. Don’t have to do that bloody report. What about my retirement fund? Can finally do what I want. I gotta live before I die.

So then what’s the treatment?

There is no treatment.

So then how do things play out with this? I eat more fruit and take more vitamins and some pills and it stops?

I’m afraid not Mr. Noble. It will progressively worsen, affecting your major organs. You kidneys, your lungs and your heart. The hardening of tissue will continue. For some reason he laughed.

So this isn’t a case of Carpal Tunnel Syndrome? The joke fell flat. Butterflies attacked his stomach and could feel sweat on his forehead.

"So then how serious is this Derma piece?"

Scleroderma is fatal. He looked at my swollen hands and wrists, the bruising and little dark bubbles that had begun to cover both hands. Straightening his hands the knuckles and joints changed to a dull green color.

Umm, how fatal is fatal? I mean talk to me here. What the fuck do I have? Voice raised, jittery, an aggression emerging.

From what we know, five-year survival rate is 70 percent. The ten-year survival is 50 percent.

You mean I’m going to fucking die from this? Noble walked to the far side of the room, turned and glared at the doctor.

It is likely you will. Whether in five or ten years, or fifteen or twenty. It is a progressive fatal disease Mr. Noble, so it will kill you eventually. Or if you’re lucky, old age will. But the affects can be horribly debilitating and painful. That’s nice. That’s really fucking nice.

Listen, I know you’re a good doctor but are you sure about this?

Yes. We’re sure. I had my suspicions but from the results of the last round of tests, this is our confirmed diagnosis. Only when we’re sure would we give this kind of news to a patient. You understand.

Such a clean and safe life I’ve lived! No. Posture straight. Strength returning. There was no way this could be right.

And what causes this Derma?

Scleroderma has no known causes. It affects men and women between the ages of 30 and 50. We don’t know what triggers it.

No cure. Fatal. And no treatment. Anything else? Grabbed his bag from the chair.

I would like to see you in two weeks for some pulmonary tests. When it hits the lungs it is the most dangerous. See, your cells in these organs die off, along with smooth muscle cells, and are replaced by collagen. Without getting too technical, healthy cells die, harden and eventually cause organ failure.

Right. Impassive. Indifferent. Knapsack over his shoulder. Well then I’ll see you in two weeks. He walked out the door but turned around and went back to the doctor to shake his hand. Thank you doctor. Thank you for being honest and direct. Looking deeply into his eyes, somewhere in his mind Noble knew it would be the last time he would ever see him.

Chapter Two

Just Surviving As Noble Intent

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A bit about Aaron Noble and his life up to his forty-eight years. Dominated by an older brother who excelled at everything he did, so the younger Noble found it was easier to remain in the background, soon learning it was preferable not to participate due to the inevitable comparison with his achiever brother. With a father who left the family when he was four years old, his younger sister was his closest friend and confidant since they together had been the ones who helped their pill-popping mother through the half-dozen suicide attempts and the drunken rants that were never remembered in the morning.

Despite only being three years older, his brother Rex had never taken a liking to him. His only memories were of Rex and his friends mocking him whenever he tried to join them, always ending up in tears, with cuts or humiliated. His mother, on a few occasions, had spoken to Rex to explain his responsibility to help and protect and include Aaron, but without a firm fatherly role model Rex ran rampant in everything he did. Reckless and talented with unusual physical coordination, Rex was popular throughout school, ever earning a scholarship to Rice University where he played baseball.

The younger Noble adopted a gentle, withdrawn manner that protected him from ridicule. It was safer to not participate than try in any activity, whether with Rex or with his own classmates. Noble’s best friend moved away from Corpus Christi in the seventh grade, leaving him without any close friends at all. His quiet and gentle manner did not cause him to be the victim of bullying because he was already mastering the art of being invisible.

His father, an aeronautical engineer with an outgoing, bigger-than-life personality like Rex, had moved to San Francisco and had started a new family, but that didn’t stop him from writing his father often, clinging to the illusion that they were close yet ignoring that his father seldom replied. It was a source of strength for Noble to exaggerate and fabricate skills and achievements he never did but believed his father was proud of him nonetheless. And he chose to ignore the drunken outbursts of hate his mother had that belittled his father. He excused here for her bitterness because of course she was still grieving.

Noble read novels to pass the time, and constructed model airplanes until his bedroom was full of them. Then one night during high school, Rex and his best friend Darryl destroyed them all with a baseball bat. Noble had forgotten why they did it and chose to ignore it, not reacting to the loss and adapting the belief that any more models he built would suffer a similar fate.

After high school and with no scholarship or money for university, he tried his best to find a writing job, soon taking a low-paying job at one of the local newspapers. His reticence and gentle voice were not enough for him to keep the job but it did lead him to find a job with a local manufacturing company that made electronic parts and boats. When asked to write a user manual for one of the many units imported from Taiwan, the owner of the company hired him full time to rewrite all user documentation that came with each unit because the Chinglish as he called it was unreadable. Noble found his niche as a technical writer in Houston, a job he still had after nearly twenty-five years. He found it interesting to import parts from the Chinese.

Noble found he liked his routine of work and the savings from his meager paycheck, choosing to forego activities that cost money. He spent his nights watching television or out walking, comforted that he would one day have a decent pension from his investment in his retirement plan. South America was where he wanted to go, a dream that motivated him each day that passed without spending money. And he wanted to see his cousin Alistair in Saudi Arabia and wanted to see the Great Wall of China.

Years passed him by, saving his pennies, seeing less and less of his family except his younger sister Vicky, who had settled down in Florida, not far enough away to avoid during the holidays. He tried to be a good uncle to his nephews but no matter how hard he tried, the birthday cards were intermittent and phone calls rare.

Noble watched his brother Rex from afar, seeing a promising baseball career end during his junior year after being expelled from university for being convicted of rape, spending time in prison, then from job to job, slowly developing into an alcoholic like his mother. Last he had heard Rex was a member of the Banditos Motorcycle Club, spending another stint in prison and now living in the clubhouse in Dallas. Noble still felt fear in his gut when thinking of him.

There had been a number of failed relationships with an array of different women, but none lasted more than six months. After losing his high school sweetheart due to reasons still unclear to him, he had floundered in his efforts to find a companion. Soon he rationalized it was easier to go solo, keeping to his routine.

From long hours spent at the computer, his eyes had begun to fail, requiring him to wear eyeglasses. When his hands became sore and bruised, he had assumed it was Carpal Tunnel Syndrome and therefore cut down on the time spent on the computer, with the exception of only the necessary manuals required for work. Noble spent his free time resting his hands, waiting for it to go away.

Then finally he went to the hospital, enduring blood tests and frustrated doctors, resenting the money required to determine the source of his pain, ending with a diagnosis he had never expected.

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Almost mechanically, Noble walked to his favorite restaurant, ordered broccoli and tofu with rice and a coke, and stared ahead holding his head with his hands under his chin. Swirling thoughts, doubts, exasperation and shock created a cocktail in his brain. He let out a laugh, a short burst, then rubbed his face and shook his head. Then he laughed again but it morphed into tears and a suffocated cry, quiet enough so others wouldn’t see but powerful enough to illustrate his new situation had registered in a mind long trained to bypass all danger that could hurt or hamper his life.

Then a long sigh.

At one point during the meal he shook his head again and threw up his hands.

After the meal on his long walk to his apartment, he began to feel a thrill, an irrepressible lightness he hadn’t felt since perhaps his early childhood. It was all over, his game of safe living, his pussy-footing and chronic avoidance of all life had to offer. The thrill stemmed from mischief, and the knowledge of having the means to leave his life, quietly and without fanfare. He already knew where he would go before he uttered the question to himself. With some of the best surfing in South America and one of the cheapest places to live, he would move to Ecuador and finally endure the embarrassment and overcome his fear to learn how to surf, or maybe to go horseback riding. There was no other place that offered what he wanted; it was what he had been daydreaming about while at the office.

Sure there were other places he’s like to see, like the Great Pyramids and the Great Wall of China, but he wanted to gather his thoughts and relax in the middle of the world first and maybe even write an article for some of the surf magazines he was always reading. He knew the international surf competition was taking place in the next few months. Besides, he loved speaking Spanish.

The more he thought about it, the easier the whole thing was. Giving notice at work, giving notice to his landlord, selling some furniture and buying a backpack, were the major obstacles. There would be a penalty taking his retirement early but there was more than enough in there to support him in Ecuador.

By the time he arrived home he was high with anticipation. A lot could happen in a year or so.

Chapter Three

Beyond Neophobia

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The inertia of place can kill a man. Entranced and chained by comfort and ease deadens and destroys the given right of man to step beyond the horizon and clasp the abundance in life. These were Noble’s thoughts when he stepped into the airplane leaving for South America.

It was only after he was airborne that his new reality hit home. It gave Noble time to reflect over the past four weeks, wrapping up his old life and tying up loose ends. Only from 30,000 feet above and out of the States was he able to see how he had gone through different phases of emotion, and how he could see how some of his behavior had changed. Upon reflection he saw how at first he felt relief that there had finally been an answer to the question that had haunted him for months. The diagnosis was tying up a loose end that had bothered him. Then incredulity and disbelief followed by a somewhat violent gathering of facts about the illness to erase the immediate doubt that arose, but when the facts were made clear and all the symptoms matched there was an undeniable moment of acceptance that the disease was precisely what he had.

When he had heard there was no treatment and that it was fatal, he was overwhelmed by the sheer absurdity of it. How could there not be treatment? How could there be no known cause? Hands are thrown into the air and laughter followed. When the absurdity phase faded, a stunned shock caused a dazed and numbed state, intermixed with outbursts of laughter that ended in tears and muted crying. The brief cry, only a few seconds or so, was the most potent feeling of sadness he had ever felt. But its potency was an experience that had remained with him, reminding him of the danger it carried. To take the path of the victim would destroy and ultimately collapse his life, not a way to experience the final years.

Then there was the moment of profound insight, that all the things that had bothered you and intrigued you will all soon be gone. An overwhelming sense of loss hits you, the senses will soon cease witnessing the magic of everyday life, from the colors and smells to the beauty of the architecture and a tree, and even the inexplicability of how so many people rush through life.

The first behavior change was surprising. Each and every person he had contact with he treated with a pure sincerity, meaningful eye contact and an insuppressible desire to give them respect and gratitude. Petty beefs evaporated in a moment. Forgiveness was tantamount to all, and social intercourse became selective. Those he chose to spend time with were those friends who truly meant something to him. And it was surprising who these friends were. What he chose to talk about was different, perhaps a level or two deeper than usual, showing no fear asking meaningful, human questions to those deemed worthy of his time.

Unexpectedly there was a sense of relief to the lifelong question of when you would die. Finally, there was an answer to the unknown that had long been accepted as inevitable. There was a neatness to this knowledge as well, so that now plans could be made. Saving money for a life that had you living until you were 95 was no longer a worry. A certain freedom was experienced, that negated anxiety or worry. This freedom was a brave freedom, a sense of uninhibited options now feasible and more likely to happen.

Any hard edge or impatience disappeared, and deemed wasteful and irrational, the product of an immature state and a frustrated disposition. All quantities of fear disappeared, which transformed the everyday experience, making it richer. A new assertiveness emerged, which allowed curiosity to be followed and respected. Neophobia became a thing of the past, never again a hindrance to new adventures.

Priorities changed. What was once regarded as important was demoted to its proper place when ones quantity of time left is known. Any quantity of sadness was not for what will no longer be but for all the past times that were not fully enjoyed for what they were, instead hindered by trivial worries and ridiculous insecurities. The sadness was a lamentation for one’s own ignorance that had cast shadows on the existing richness of an event or experience. And past disagreements or fights demanded resolution, with the sole object being forgiveness, not by them, but for him.

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There were other things too. His morning wake up was the moment his mind took footing on the new day, setting his agenda and establishing the cadence and tenor of his mood. It was the moment to instill hope for a day of success and fruitful endeavors, the first spark of the sparkplug that ignited power, piston and the hum of the engine. This moment changed when Noble had been given the news of his immanent death. The kick-start was different. Perhaps the kick itself was milder, the grind of the motion weaker, the urgency to tackle the day not as important, or, more accurately, mot as crucial. The sparkplug moment was somehow different. The limitless horizon seen throughout his life now had a limit; the cloudless sky now had thunderstorm clouds, hail and impending lightning that he knew would strike him. The step of the day, usually light and full of purpose, was now only a shuffle without urgency.

It was a somewhat unpleasant experience, an event tinged with tragedy and reservation.

Little things like making his bed were lowered in priority. Saying no to things he didn’t want to do was easier. He became more at ease with designing his day the he wanted. He was more inclined to take a moment to admire and respect nature, like the patter of raindrops on a canopy or the clouds descending on a mountaintop. The futility of shaving became clear, as did the importance of wearing the right shoes, or for that matter, wearing shoes at all. Sandals and comfort became the norm, and there was no anxiety or worry about what others thought.

Being beholden to another took on the flavor of being a chore. Being alone yet together with his profound thoughts comforted, and the constant race against time ceases altogether. Instead time, or the passage of time, became his intimate friend. A new calm manifested, a person who didn’t react emotionally to those things outside of his orbit of control. Even the ubiquitous points of debate on hot topics of religion and politics and economics dwindled in importance, instead regarded as: to each his own.

However, the most profound and central thought when told he had a few years left to live was the most revealing of all. You ask and ponder: Have I lived the life I really wanted to live? Were you spending the majority of your time doing something that had little meaning to you? Was your time spent doing a job that was only a means to an end, an end you hadn’t even touched? Or had you spent your time doing that end?

The answer to these questions was everything.

If you spent your life working on the means, there would be a rush towards living the end, running to this illusive life that had always been out of reach. Fueled by a sense of overwhelming loss and fear of being pummeled by an avalanche of regret and self-reproach, in a frenzy you frantically embrace the life you had always coveted. Conversely, if you had chosen and had lived your dream, a clam pride and sense of meaningful fulfillment becomes the tenor of your new emotional base, a poise and tranquil satisfaction that heightened and bestowed on you an unmentioned honor.

There was also an element of relief if you had followed your own path, as if proven correct and its wisdom verified. It was a relief from having to experience the most profound tragedy possible to an individual with an unrealized dream. But this was not what Noble experienced. As good as he was at ignoring, as time passed this tragedy could no longer be ignored, its torment lacerating him, his anguish piercing. Why hadn’t he learned to fly an airplane? Why hadn’t he taken time to stay at a surf camp?

No doubt about it, the toughest thing he was dealing with was that he hadn’t done anything with his life that he truly wanted. He had survived. That’s it. No surfing. No pilot lessons. Just television and work. It stung him deeply. Fueled a rebellious plan. He wondered how he would feel if he had done it the other way and surfed for twenty-five years and flew a crop plane for a few bucks a day. How different would he feel?

Chapter Four

The Middle of the World

Quito, Ecuador, South America

July 2011

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There was a great vibe to Quito, a city surrounded by a natural amphitheatre of Andean mountains that sloped upwards with green patches like a ski resort during summer but with no chairlifts. The natural plateau so high up in the clouds nurtured a symmetrical view that pleased the eye and calmed the soul. The environment made him philosophical about his plight. Noble intuitively understood why the Inca’s had chosen this location as one of the two seats of power and why the Spaniards used Quito as their base to expand, conquer and create an empire.

While in the taxi going to his hostel, his mind was filled with last minute perspective adjustments, as if usurped by an inner philosopher wielding a hammer: "Only a total lack of fear will enable you to attain true freedom. To have the time and financial independence to do what you want still won’t give you that freedom you know exists. To be imprisoned by a job you didn’t like but needed to do to survive was to know what lack of freedom was, so now, free from the job, take that laissez-faire-I-don’t-care attitude to fuel a newfound freedom. Absorb an I-don’t-care-what-others-think heedlessness that celebrates each day free from routine, punch cards, and normalcy. Judgment has been thrown out. Inhibition is fear and thus is not allowed! To act fully without infringements or restrictions is to truly live." He stroked his unshaven chin. Where had this voice come from?

These were his thoughts when Noble stepped out of the taxi to the Swiss-run hostel he had chosen.

Clean, safe and cheap, he was unpacked and curious to explore his new surroundings but balked. He sat on his bed and listened to the sound of silence, but then the voice of the philosopher resurfaced: The quiet calm of listening and observing lets the genius in, suffuses into the fiber, transplants into the human organism, now your own, and waiting to be tested. Get fishing; get out there in the mix because half of life is just showing up. Avoid letting the voices of doubt inhibit you from taking the first step, from putting you in the mix. Ironically, to first embark into the mix is the most difficult step to master your fate, only because it’s at this stage that your step is the most tentative. Your inner house is still hectic! You ought to be gently pushed into the scrum to begin! His doppelgänger inside his head was strange but it had a calming effect on him. It knew what needed to be said for Noble to step away from the inertia of ignoring life.

Darn right! he said. "’Ought to be gently pushed,’ that’s a good one, Reno." Why not let Reno the philosopher say his piece? If he was Noble’s doppelgänger then it was excellent timing because if he ever needed help to overcome his shortcomings, now was the time. Called him Reno because he was the only philosopher he knew, an ex-classmate who studied philosophy at college and grew his beard and threw himself into it. Just sounded right to call that voice in his head Reno.

Noble left the hostel and walked through the central park to Mariscal where the expatriates hung out. Lacking poise and a game plan, Noble walked down the busy streets heading towards the restaurants and central plaza, when he passed by a large outdoor market. That was where he met Pedro.

With good posture, Pedro from California held court on the corner, groupies hanging around his knapsack full of stones and bracelets and earrings. There were hippies lined against the worn brick and stone buildings. He raised his chin and spoke:

Stones from Ecuador. All sorts of colors. With raised arm he stopped Noble from fully turning the leave, having no interest in his stones. Come, I have what you want. Marijuana? Pedro stepped closer, confident he had spotted a North American partier with Noble’s stubble and Birkenstock sandals. For a moment Pedro’s eyes pleaded with his.

Noble, tired and sore and on his way for a pint, looked at the round face with shaved head and mini ponytail at the back, surprisingly intrigued with the hip English speaker. He fought his habit of avoiding engagement with people. And then he heard the distant voice of Reno, whispering something about saying ‘yes’ to opportunities. People who are dying never procrastinate.

I know this town. I take travelers around sometimes. From San Diego but my mother lives here. Better here. said Pedro, lowering his voice and leaning into him so others couldn’t see. "Why don’t we get some cervezas? ‘Been walking and the body and soul needs to take respite."

Pedro spoke a quick burst of Spanish to one of his friends standing on the corner, scooped up his bag and patted the guy on the shoulder. There was an understanding. Nods all around. Noble sensed danger but was pushed on by his doppelgänger.

Walking down the street Pedro looked closely at him with a curled tongue, letting out the quietest whistle along the equator. His broken teeth catching the sun, scars on his face showing empirical data from living life.

"We go get a cerveza at my cousin’s bar, he said. He has cerveza there." It was if Noble had been hijacked by a higher power, walking into an obvious trap. But he was adamant on facing his fears and opening doors. Besides, he had smoked weed once before but Rex and Darryl certainly had toked their fair share. He had a solar-plexus pang at the thought of how much he had missed in life.

They walked through the streets of Quito, palm trees and old colonial houses, until they reached a café. When Pedro went behind the counter into the kitchen Noble reached into the fridge and removed two beers. His thirst was raging and his fear was ebbing.

No, no! said Pedro. We can’t drink here.

Why not?

"You didn’t hear man? Last night nineteen people died from drinking a type of strong homemade tequila, like moonshine. Ninety-percent alcohol. There was something wrong with the mix. Sometimes the guys who sell it behind the cafes add something to it so they can sell more. Betcha there are more than nineteen dead."

So how does that affect us drinking beer?

The president declared no drinking for three days in mourning.

Just my luck, replied Noble, shoulders hunched.

"No hombre! As I said, I can get some stuff if you want. We can take these beers and go down close to my place where I can pick up if you want. I can get base or