Towards the end of January 1997, I flew out to Ohio with my two sons (Russell, age 4, and Gus, age 8) for Russell’s pre-arranged visit with the legendary osteopath Dr. Fulford. We checked into our hotel near the Cincinnati airport and settled in for the night—the boys took full advantage of the hot tub and cable TV! We set out the next morning in a rental car toward Dr. Fulford’s home a couple of hours to the south.
Dr. Fulford lived in a modest one-story ranch house on the cul-de-sac of a sprawling retirement community. He opened the door himself and immediately looked down at my children with a twinkle in his eye. He had obviously been a large man in his youth but was now stooped over with age. He had a shock of white hair, and I noticed that his massive hands were bent with arthritis—I hoped they could still work their magic.
Once we settled into his examining room, Dr. Fulford looked over at Russell as if deep in thought. By this time, Russell had been on a solid regimen of acupuncture, homeopathy, and nutrition for three years, as well as having had several months of osteopathic treatments with Dr. Goodman early on. Russell had responded dramatically to all of these treatments and now suffered from very few of the CF symptoms he had endured as a baby. There was in fact little evidence of the general decline anticipated with a CF diagnosis. Someone with an untrained eye would never have suspected that Russell was in anything but perfect health. But Dr. Fulford had treated thousands of children during his more than 60 years of active osteopathic practice. I also knew from our phone conversation that he had treated a number of children with cystic fibrosis. He knew exactly what to look for and was well-versed in the spectrum of severity that can accompany CF. His first question caught me completely off guard.
“Why do they think he has CF?” he asked, observing Russell intently.
“Well, ummm, he had all the classic CF symptoms as a baby, and he’s had the diagnostic and DNA tests to confirm it,” I replied awkwardly, thinking he must have known all this.
“I see,” he said. He paused.
“Well, he doesn’t have the affect of a child with CF,” Dr. Fulford observed. “So why do they think he still has it?”
I was too stunned to respond. Just what exactly was he implying? That one could recuperate from a genetic disease? This notion was like an irresistible but potentially traitorous muse—compelling but also extremely discomfiting to me—and I found myself literally holding my breath. I remembered back to my earlier discussion with Rick over the phone, and his claim that Dr. Fulford could observe someone across a crowded room and accurately pinpoint their condition or illness. Prickles went up my spine and I wondered if this was how Alice felt during her inane conversations with the Cheshire Cat.
“Well, ahhh… I don’t know,” I said, fumbling with my words, “that’s just how they approach CF—you know, that once you have it, you always will.”
“Hmmm,” Dr. Fulford replied.
“But I don’t think he does anymore,” I suddenly gushed, feeling positively reckless for articulating such a preposterous thought out loud.
“Hmmm,” he replied again, nodding thoughtfully.
He helped Russell climb up on the treatment table, joking with him in a quiet, reassuring manner. Russell seemed intrigued by this slow-moving but light-hearted old man. Gus and I sat in chairs nearby watching intently. Dr. Fulford reached for the steno pad and pencil on his desk and asked me about Russell’s medical history. I gave him a drastically abbreviated recounting of his spina bifida birth defect, the corrective surgery that followed, and his subsequent diagnosis with CF at eight months old.
“Anything else?” he asked in a low calm voice. He seemed thoroughly unruffled by Russell’s double whammy.
“Isn’t that enough?” I couldn’t resist responding, weighed down by having to once again acknowledge Russell’s terrifying medical history.
Dr. Fulford began his physical examination by feeling Russell’s pelvic bones.
“His left hip is out,” he said. “It’s not sitting in the joint properly.”
His comment called to mind a walk in the park that the boys and I had taken a few days earlier, with Russell once again complaining that “my legs hurt” and begging me to let him ride in the stroller. During the walk, I silently chastised myself for even bringing the stroller and, more, for babying him all his life as if he were crippled. Then, as if it were Russell’s fault, I had scolded him and said that, if his legs checked out OK with both Dr. Fulford (the trip to Ohio was imminent) and the orthopedic surgeon (we would see her during Russell’s check-up at the spina bifida clinic upon our return), I was going to give the stroller away!
I gulped guiltily at Dr. Fulford’s observation. No wonder Russell has been complaining about his legs hurting, I thought to myself, his damned hip was out of place! Dr. Fulford repositioned Russell’s hip ever so gently and began to work on his lower back.
“His sacrum is out,” Dr. Fulford said. “What was his birth like?”
Having just read his book, I knew he was asking about the first yell—essential, according to Dr. Fulford, to realign the body and return the ribcage back to its proper position after a baby crams its way through the narrow birth canal. I told him that Russell was born yelling.
“Hmmm, that’s good,” he replied thoughtfully. “Well, my guess is that when they did his back surgery, they inadvertently moved his sacrum out of place. The sacrum is connected to the diaphragmatic muscles, which are connected to the lungs.” He then positioned his enormous hands on Russell’s chest.
“His ribcage is completely locked and he probably hasn’t been able to get a full breath since the surgery on his spinal cord. That’s probably what kicked off the CF. Most doctors don’t understand this life force. It’s very delicate.”
I was stunned. No one, not one doctor, had ever suggested that there was a connection between Russell’s spina bifida and cystic fibrosis. The doctors in both the CF and spina bifida clinics at Children’s Hospital minded their own business, so to speak, and didn’t seem to concern themselves with the cause (or symptoms) associated with the other clinic’s specialty—even though the child in front of them had both diagnoses. At one point, I myself had conjectured that perhaps they were both caused by my own nutritional deficiencies, but then realized that, if that were the case, there were likely to be thousands or even millions of other kids with both conditions. (There weren’t any that I knew of.)
What on earth was Dr. Fulford implying? I was already somewhat convinced that genetics were not destiny, but rather an indication of vulnerability or, at most, a predisposition. Geneticists had said as much in media interviews when discussing the recent discoveries of breast cancer and obesity genes. But CF? No one had ever suggested that Russell’s body had any choice about whether or not to manifest the symptoms of CF.
Today in 2017, gene expression continues to be an exciting area of research. Though it is still not known exactly how the triggering mechanism works, researchers now agree that genes can be turned on (“expressed”) or turned off (“silenced”). However, had I ventured a discussion with our CF doctor 20 years ago in 1997 about Dr. Fulford’s suggestion that Russell’s CF gene had been activated by his sacrum being moved out of place during surgery and then deactivated by the alternative healing treatments, the CF doctor would have undoubtedly dismissed the idea as utter nonsense and chalked it up to my being in complete denial about my son’s deadly prognosis.
This essay is an excerpt from Dr. Beane’s memoir, Embracing The Dragon: A Parent’s Journey To Reclaim Hope, which chronicles her use of both conventional and so-called “alternative” medicine to treat her son’s cystic fibrosis. You can read her previous essays ACUPUNCTURE (Parts 1 and 2), HOMEOPATHY (Parts 1 and 2), and OSTEOPATHY (Part 1) by selecting the Alternative Medicine tab on her website: www.LindsayBeane.com.
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