The Light at the End of the Tunnel Remembering David and His Long Journey to Wellness

by Ginger Savely, RN, FNP-C

“I'm out on my bike, eating up the miles! I already have one sponsor for my ‘Stop Lyme Disease!’ bicycle racing team. None of this would be possible without wonderful YOU, YOU, YOU!! Biggest Blessings and every word in the thesaurus under ‘KUDOS’! " Thus read David’s last email.

There is no way to describe David without using the word “odd.” He had an odd way of speaking – a deep, resonating, clearly-enunciated voice that sounded like a radio announcer or even an opera singer as each word rolled deliberately off his tongue. He had, at times, an odd way of dressing, perplexing the other patients in my office waiting room when he would appear clad in tight short shorts and a form- fitting T-shirt as if straight out of a 1975 time capsule.

He had odd standards of personal hygiene - it was not unlike him to go a full month without washing his long scraggly hair, which he kept in a ponytail at the nape of his neck. He had odd mannerisms that made people not quite sure what to make of him, whether to think him brilliant or eccentric, socially inept or purposely peculiar. He had odd ideas about the earth – wonderful, brilliant but naively innocent and optimistic ideas about world peace that he promoted through his “Canonical Thought,” a treatise he had written with step-by-step instructions for a more peaceful planet.

With his tall, lanky frame, salt and pepper goatee, long, thinning gray hair, and huge, inquisitive blue eyes, David made for an unforgettable figure. In his 50+ years he had suffered more than many, and traces of this torment could be noted in the furrowed creases of his brow and in the occasional look of bewilderment behind his earnest gaze.

He was at his physical and mental peak in the early 1980’s when his body began to betray him. A Stanford graduate with a math degree, he had just enrolled in the University of Texas at Austin, working towards a PhD in computer programming. David rode his bicycle as far and as often as he could each day.

He loved to ride more than anything else and took pride in his strength and stamina, often participating and faring well in competitive races. When he wasn’t riding or studying he was hiking, enjoying nature, composing music, or engrossed in any number of intellectual endeavors. His curious and agile mind consumed new information with a voracious appetite. He read everything he could get his hands on: books on philosophy, religion, history, physics, metaphysics, mathematics, poetry, music, art, and psychology lined his bookshelves. Life was full of possibilities and there seemed to be nothing to stand in his way.

But David’s world began to crumble when he started to get confused and unable to think clearly or do the complex computer programming for which he had developed an unmatched expertise. He became easily fatigued and too weak to ride his bicycle. Sleep became a precious and uneasily obtained commodity. He was anxious, panicky, and moody. He developed chronic sinusitis, joint pain, urinary difficulties, hypoglycemia, and numerous other symptoms and conditions that made him seem like a hypochondriac.

Told by various doctors that he had Candida, Chronic Fatigue Syndrome, and/or Fibromyalgia, he set about regaining his health in the same meticulously systematic and informed fashion with which he approached every task in life. He read books about chronic illness, meditated, took handfuls of supplements, and did high colonics, chelation, and every other type of alternative healing strategy he could access and afford. Unable to work or study, David had to withdraw from the PhD program, abandon his position as teaching assistant, and apply for social security disability, which he finally obtained after three years of great effort. The next ten years he spent most of his time at home, usually in bed, sleeping when he could, dabbling at this and that when his mind would allow it, developing a web site about his new “meta-theory of everything,” and wondering if he would ever ride his bike again or be capable of the mental calisthenics that had come so easily to him in earlier years.

As often happens to those who become reluctant hermits, David’s world began to shrink, and without the stimulations that had previously occupied him he started to obsess over every detail of his physical status. He documented his days, moment by moment, on a computer database, convinced that each and every detail of his life would be of importance in discovering the key to his recovery. He became self-absorbed, his condition and his reactions to his surroundings more important than any other topic of conversation.

Without the feedback and perspective of the outside world David thrived on narcissistic and grandiose convictions that his writings and talents were extraordinary. As founder of Canonical Thought, “genius thinking for humanity,” he considered himself the architect of a plan for a “stable postmodern civilization.” However, his website www.canonicalthought.org, rather than a source of guidance, became more of a monument to his delusional grandeur, his prose deliberately obtuse, most likely in order to baffle those he considered his intellectual inferiors. To the annoyance of everyone around him, he chose to refer to himself as “Founder.”

David gradually pushed away friends and family when they dared to voice disagreement or skepticism about his self-centered reality and obsession with his sick role. He was a fragile soul, prone to paranoid delusions, overly sensitive and vigilant, melodramatic about his conspiratorial convictions. His inner turmoil made the prominent slogan on his website all the more ironic: “Remember: world peace begins with each of us.” In fact, although his ability to maintain relationships was dismal, he continued to consider his facilitation of world peace a life mission and to be devoted to all humanitarian causes.

His withdrawal from social contact engendered some endearing qualities in him as well. With all of his foibles and eccentricities there was still a child-like excitement and wonder in David. His life was structured and predictable, so he was more than appreciative of anything that offered a change of pace from his lonely and simple routine. His large blue eyes would widen and brighten over a touch, a word of encouragement, a small gift or an unexpected compliment – things that most of us would have taken for granted, swallowed up in the daily confusion of our complex lives. He was as giddy as a young boy when he dramatically read aloud the ode he had written and framed for me, one of many thoughtful offerings expressing his admiration and appreciation. It was David’s impulsive innocence that made him somehow irresistible.

The best thing that ever happened to David was Judy entering his life in 1991. With her cheerful and loving optimism she provided balance for his serious and negative tendencies and helped him learn to treat others with loving acceptance, if only in his superficial interactions. She became his best friend, his lover, his soul mate, and his contact with the outside world. They lived together for eight years and helped each other with the simple but necessary details of life. She drove him to his medical visits, bought groceries, did laundry, and tended to many of his other needs. In return he became Judy’s computer guru, designing and maintaining her web site, and coming to her rescue when the burdens of technology outweighed the benefits.

Eighteen years his senior, Judy had a caregiver personality and was patient and tolerant with David’s moods and idiosyncrasies. They made an unusual couple but clearly a loving one with a deep spiritual bond. They shared a passion for classical music and for all things metaphysical. She appreciated his logical mind, his dry humor, and his quirky poetry while he was attracted to her beauty, her attitude, and her intuitive approach to life that was so different from his own.

When I started to see David as a patient in the year 2000 he was fourteen years into the worst of his illness and quite desolate about his chances for eventual recovery. He would arrive at monthly visits with reams of paper in tow: documentation of his every symptom, his supplements, his questions, and his concerns. He was so pale and thin and glassy-eyed that he often seemed on death’s doorstep, confessing he had not been out of bed since his previous appointment. When I diagnosed him with chronic Lyme disease, he became the consummate patient, following my every suggestion and compliant with treatment even when the side effects or symptom intensifications were nearly insupportable.

He was my sickest, most challenging patient and he became so touchingly dependent on me that I couldn’t help but take him under my wing. I attended his intimate 50th birthday gathering and gave him little gifts from time to time. I extended myself for him in ways that I did not for many other patients, catering to his needs and going out of my way to obtain free or low cost medications for him, since the cost of maintaining his health left little money for food or other basic needs.

I treated David with antibiotics for five years and during that time there were moments when I felt hopeless and powerless and ready to concede defeat. I had never worked so long and hard to heal someone without seeing even a glimmer of light at the end of the proverbial tunnel. But he insisted that we keep on, determined to regain his health, promising me that one day he would ride his bicycle again and would win his first cycling race in my honor.

David and Judy ultimately had an amicable parting of ways and moved to separate apartments in different parts of the city. It was this forced independence that marked the start of David’s gradual turnaround, the beginning of his rehabilitation, his ascent out of despair. After twenty years, he finally got back on his bicycle.

Judy and David continued to be close friends and watch out for one another. When David collapsed during one of his early bike rides and was taken to the emergency room with a broken hip she was waiting when they wheeled him out of surgery and as he went through rehabilitation. When he began riding again and fell off his bike and broke his elbow, she was there. His self-centeredness made her so angry at times that she wanted never to see him again, but something about his neediness and the deep bond they had shared kept pulling her back.

Just after the tables began to turn for David I had to move my practice from Austin to San Francisco and David, who lived at a subsistence level, was clearly unable to continue under my care. ”What will I do about David?” was the first thought I had when I found I would have to abandon my Austin practice.

Fortunately, he began to see a doctor he had seen before me, who agreed to continue prescribing the antibiotics and other medications I had given David over the years. We would continue to email one another and I was pleased to hear his reports of increased stamina and well-being. It seemed a miracle was unfolding. After over twenty years of ill health, David was now clearly seeing the light at the end of the tunnel and even expressed to Judy, “Life is good!”

David got to the point where he could ride his bike for three hours straight, three days per week - quite a feat for someone who had been essentially bed-ridden for twenty years. Of course there were still problems – he was not as cognitively adept as the pre-illness David and there were those remaining bothersome symptoms that required him to stay on the medications that he lined up so neatly on the shelf by his computer. But I began to use David as an example to my other Lyme patients who were losing hope. If David, my sickest patient, could get better, then surely they could too!

David had a pact with Judy that whenever he was about to embark on a long bike ride, he was to call and leave her a message so that someone would know where he was in case something happened and he never returned. On the morning of December 19, 2006, at 5:00 a.m. he left the following message: “Hi, this is Founder. I’m leaving for a bike ride and will be home around 8. Do you want to get together tonight?” Judy has since played that message over and over again.

Nothing could have prepared her for the call she received at 8 a.m. Rather than the voice of David, she heard the voice of a stranger, a voice telling her that David was on the side of the road unconscious having been hit by an SUV going about 40 miles an hour. David was rushed to the hospital where immediate emergency surgery was performed for a ruptured aorta. There were numerous other injuries – broken bones, scrapes, bruises, a concussion, and internal injuries. The distraught driver of the SUV was in a panic and revealed that she had made eye contact with David as he waited at a crosswalk, but in a moment of poor judgment David had unexpectedly darted out in front of her.

Cyberspace works in mysterious ways and so it was the day after the accident that I received David’s last email. For three weeks he remained in a coma and on total life support and his chances for survival looked slim. Judy was by his side daily, praying, talking or singing to him, holding his hand, stroking his barelyrecognizable, swollen and bruised appendages. She asked the ICU nurses to play classical music in his room at all times to soothe him and she read to him from books of philosophy they had once cherished together.

The holiday season bore a backdrop of melancholy and underneath my sadness was a gnawing guilt – guilt for all the times I ignored his many, verbose emails; guilt about the times I didn’t respond when he asked me to edit one of his manic diatribes because I sensed the pent-up rage and did not know where to begin; guilt about the fact that I was much more important to him than he was to me and that I never truly appreciated the fact that I was one of his very few friends.

The evening of December 25 Judy and I were at David’s side as we ceremoniously unwrapped the Christmas gifts he had left for us. She had found them in David’s apartment, where she had been going daily to feed his beloved, bewildered cat, CC. It was a painfully poignant and surreal time. Never had I worked so hard to heal a patient or seen a patient work so hard to be healed.

And now it was to come to this?

David took his last breath on January 10, 2007, two hours after removal of his life support. Judy and the best friend and sister he had estranged were by his side, testimony to their enduring, and unconditional love for him. For me the irony was bitter. If I had not helped David recover he would not have been out riding his bicycle and would not have been killed. On the other hand he had the privilege of leaving this earth without pain or fear, doing what he loved the most, full of hope for better days to come.

For a man who had lived in isolation there were a respectable number of mourners present at his touching and intimate memorial service. All of them had known David in his better days and had seen the light of life and hope in his eyes along with the anger, the pain and the desolation.

This is not the way the story was supposed to have ended. David should have gotten stronger and stronger and raced with the “Stop Lyme Disease!” racing team and won that first place trophy proving that in the end hope prevails!

A few weeks later as I helped Judy sort through and clean out David’s things in his now-abandoned apartment I saw everywhere the signs of a complex man who envisioned a world of love but did not have the skills to participate in it. What was the light at the end of the tunnel for David? Perhaps he is in that light now, basking in pure love, free from the burdens of a sick body and an anguished mind.

Life takes some unexpected turns at times and we are periodically called upon to reevaluate our perspective and seek out our inner peace. David’s life and passing had a profound effect on me, emphasizing the unpredictability of relationships, health, life, and death. We all need that light at the end of our tunnels, to draw us toward our fulfillment, to lead us toward what is good and right, and to give us a reason to face each day with renewed hope and purpose.