At the Feet of the Master
My Week With Dr. Charles Ray Jones
by Ginger Savely, DNP
Remember when you were a child and an illness or injury prompted a visit to your doctor's office? Chances are you dreaded the experience and were bribed with the promise of a treat afterwards, especially if needles were to be involved. Now enter the waiting room of pediatrician and Lyme disease specialist Charles Ray Jones in New Haven, Connecticut. Here children play video games, watch movies and look forward to seeing the man they view more as a lovable grandpa than as a doctor.
Charles Ray Jones has been treating children with Lyme disease since 1968, before the disease was named for the town in Connecticut where the first outbreak was described. He currently estimates that he has treated about 15,000 children with Lyme and other tick-borne diseases. Health care providers from all over the world call him daily for advice and he generously gives of his time and his expertise. I was honored to spend a week with him in March of this year, observing his style of interaction with children and parents, learning his examination techniques, and generally taking in the pearls of wisdom that only a healer with many years of experience can provide.
A shy, soft-spoken man, Dr. Jones has never been motivated by prestige or money. He is the consummate old-fashioned pediatrician whose love for children and a calling to heal have been his impetus to forge ahead, swimming against the tide. The humble doctor claims that he was the "ugliest, dumbest and least likely to succeed" in his family. He accepts his notoriety with reluctance and even a bit of bemusement. Nevertheless, it is clear that he is touched by the attention and adulation heaped upon him by scores of grateful patients and their parents.
Shunning the professional look of a lab coat, Dr. Jones prefers to wear a bright blue warm-up suit when he sees his young patients, a uniform that has become his signature. "Dr. Charles Ray Jones" is embroidered across the back of the jacket with the words: "Keep marching to fulfill the dream" under his name. His receding hairline merges with long, thick, salt and pepper hair that falls into ringlets at his shoulders. If you were to trade his large, thick glasses for a pair of pince-nez spectacles, you would swear you were looking at Ben Franklin in modern garb. Like Franklin, Dr. Jones is a maverick, a humanist with a wry sense of humor, a man of deep common sense who is not afraid to challenge conventional wisdom and the powers-that-be.
His fraternal twin brother's battle with bone cancer and tragic death at the age of 16 undoubtedly influenced Dr. Jones' desire to pursue medicine. In fact, his pre-Lyme calling was pediatric oncology and in those days, he says, there was little to do but watch children die. With a background that includes a Bachelor's degree in Philosophy and Psychology and a stint at the Theological Seminary at Boston University, Dr. Jones has an artistic sensibility and appreciates music, poetry, and painting. An intuitive man, he truly practices the art of medicine, with solid science as his foundation but ultimately his senses as his guide.
His office is located on the ground floor of an apartment building in downtown New Haven, in the shadow of Yale University, the epicenter of Lyme denialism. Dr. Jones lives in a top floor apartment in the same building, with his daughter, the 10 year old son she adopted from Guatemala, and too many dogs and cats to mention. Dr. Jones loves to talk about his Guatemalan grandson whose "Incan" mind, he claims, operates on a higher spiritual plane than the average person's. This precocious boy accurately predicts the future and writes poetry with sophistication and insight beyond his chronological age. Dr. Jones is clearly fascinated with his grandson's mystical mind and proud to regale the listener with anecdotes of the boy's musings.
Despite his 80 years, Dr. Jones puts in hours that would exhaust someone half his age. He works seven days a week, seeing patients Monday through Saturday and conducting telephone follow-up visits on Sunday. A typical weekday starts at 8 a.m. and ends at 8 p.m. with a lunch break just long enough to wolf down some canned soup. The proximity of his dwelling to his office makes it all too tempting for this devoted doctor to return to his work after dinner, burning the midnight oil as he reviews medical records and prepares for the next work day. Dr. Jones' hard-working assistants - Bonnie, Lisa, Sabra, Tanya, Tina and Toi - are friendly and competent. They are clearly protective of and devoted to their boss, and a family feeling is quite evident in his casual office.
Not one to be guarded, the doctor speaks openly of some of the more intimate details of his life. However, the authenticity of his statements is not always reliable as a dry sense of humor and love of pulling the listener's leg are his modus operandi. There were times when I didn't know whether a claim was truth or fiction, although a devilish grin and glint in the eye were often, but not always, his give-away.
In fact, his dry wit is an important aspect of Dr. Jones' style as a clinician. He teases his young patients, who all appear to enjoy it since the love behind it is clear. Some of his comments might at face value seem politically incorrect, but the children know that his goal is to make them smile. An example: A recovering 15 year old boy reported that for a long time he didn't want his friends to visit him. He was afraid they might be alarmed by the frightening motor disorder he was experiencing at the time. Dr. Jones' replied: "What do you mean? You should have charged admission!"
Every visit includes an affectionate moment with the good doctor, who hugs and caresses the children as though they were his own. He has an amazing memory of all of his patients, recalling details from a patient's medical history even if he had not consulted the chart for many months. He clearly loves them all. Dr. Jones is known to go above and beyond for his patients' families as well. On one occasion I saw him provide a patient's mother with a second opinion on the reading of her mammogram!
Lest you be tempted to hurry to the phone and call Dr. Jones' office for an appointment for your child, be forewarned that he gets up to 30 such calls a day. New patient visits are at least a 6 month wait. Since time is of the essence in treating children with Lyme disease, Dr. Jones' staff will happily refer you to other health care providers who treat pediatric Lyme with Dr. Jones' blessing.
The legal ordeal that Dr. Jones has been enduring with his state medical board has become legendary. The protracted harassment has squandered his time, finances and energy. A Google search of his name will provide the reader with details of what appears to be a shameful political vendetta against a man whose life has been devoted to helping children whom no one else would help. He has been tolerant of the process but is growing weary of the absurdity of it all.
At the last hearing, the usually-patient Dr. Jones had to restrain himself from saying what he was really feeling, lest he be held in contempt of court. A Walt Whitman poem kept coming to his mind and he thought of the lines, over and over, written more than a hundred years before. The poem brings to mind the juxtaposition of deliberation versus action, of theory versus experiential knowledge, of ivory tower medicine versus medicine in the trenches. It provides a thoughtful ending to an article about a thoughtful man.
When I heard the learn'd astronomer; when the proofs, the figures, were ranged in columns before me;
When I was shown the charts and the diagrams, to add, divide, and measure them;
When I, sitting, heard the astronomer, where he lectured with much applause in the
lecture-room,
How soon, unaccountable, I became tired and sick;
Till rising and gliding out, I wander'd off by myself,
In the mystical moist night-air, and from time to time,
Look'd up in perfect silence at the stars.
Ginger Savely is a nurse practitioner who specializes in treating tick-borne diseases in people of all ages. She practices in San Francisco.
