Excerpts of this article first published by The El Dorado SUN, June 2000 Issue: Looking Back To Where We Came From
"This disease parallels some of the symptoms of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), fibromyalgia, Alzheimer's, Multiple Sclerosis, and Diabetes...If your family story featured an ancestor called "Black Dutch," "Black Scot," or Cherokee, listen up."
True to her British, Scot, and Welsh roots, my mother had the whitest skin I've ever seen...and then there were her "Indian eyes."
My father was New Mexican Spanish and Yaqui. Who could have guessed he and my mother shared the same genes?
"The Cursed Souls"
by Felicia Noelle Trujillo
Intrigued with tracing my family lineage online, I was startled one night to stumble upon a supressed chapter of American founders, and for better or for worse, to discover the key to my lifelong struggle with a series of symptoms that had long mystified my doctors.
An amazing new history is emerging of a Mediterranean people, sometimes referred to as Melungeons, who settled American in the 1500's long before the Northern Europeans first arrived. (The Arabic origin of the name Melungeon--"Melun-Jinn"--means one who has been abandoned by God--a cursed soul.) No, this tale does not begin with the early New Mexican settlers, but begins with a Southeastern lineage that has spread throughout the United States, and the rare and potentially decimating genetic disease traced to these colorful people.
Even more intriguing, this disease parallels some of the symptoms of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), fibromyalgia, Alzheimer's, Multiple Sclerosis, and Diabetes. It also includes a group of other symptoms regularly ignored or misdiagnosed by physicians: acute chest pain, pleuritis, appendicitis-like attacks, arthritis--particularly of the feet, ankles, knees and hips, and the symptom for which it is named, a recurring high fever that lasts three to four days and dissipates. The name of this insidious genetic "misspelling" is Familial Meditteranean Fever (FMF). If your family story featured an ancestor called "Black Dutch," "Black Scot," or Cherokee, listen up.
Ironically, the story of the Melungeon people has been broken not by the US press, but by the BBC correspondent Richard Lister. He was astonished to find the streets of the Appalachian village he visited filled with Melungeon descendants who "would not look our of place on the Turkish coast with their dark olive skin ad straight black hair."
Sir Francis Drake brought many of these Portuguese, Armenian, and Ottoman Turks to America after he freed them from the Spanish in 1587. Genetic studies now also indicate Jewish lineage in the Melungeon people as the Portuguese Jews were fleeing persecution.
I suspect Drake was relived to deliver this human cargo and avoid whatever strange malady these people suffered. In an era of mysterious plagues, a shipload of people running high fevers would have terrified any captain.
Dr. Brent Kennedy, a foremost Melungeon researcher, theorized that the people left by Drake worked their way inland and married into local Indian tribes, a surmise well supported by the recurrence of Turkish and Arabic in the local Indian dialects--the Cherokee word for mother, Ana Ta, is identical in Turkish. Dr. Kennedy also writes about the ancient Hebrew and Roman coins kept for generations as Melungeon family heirlooms.
A client of mine from a Melungeon community in Tennessee, explained that many Melungeon were 'accidentally' rounded up with the Cherokee and sent on The Trail of Tears. My Blevins ancestor was a Chief of the Whitetop Cherokee band.
(Below, from my Mother's side, are my great-grandparents on the left, and their newly wed daughter on the right. Family names include Blevans, Kirkland, Wasson, Hoskins.)
Another historian, Henry R. Brooks, theorizes there is a close correlation of Melungeons to the Romani, or European Gypsies, who were deported by European countries to the American colonies as indentured servants. Research has also shown some Italian descendants to carry the recessive and rare FMF genetic anomaly.
M y story began as a child with the typical recurring high fevers (102 to 104 degrees) wich have continued throughout my life, occurring about four times a year. At seven I was diagnosed with arthritis of the knees, which continued to be painful until I luckily met a gruff old man named Dr. Moshe Feldenkrais when I was 26. Because I had been born with spina bifida, the extreme sciatica and pains in my legs seemed to be explained by that diagnosis. Whatever the cause, Moshe's work allowed me to move in such a way that the sciatica and joint pains became rarer until they were gone altogether. By working daily with Feldenkrais(R) techniques, I was able to access an amazing range of movement and even began to study flamenco!
Another symptom was a sharp appendicitis-like stab that could bring me to my knees--or onto the floor--at the most inconvenient of times, say when grocery shopping. In my 20's I was taken by ambulance to emergency rooms several times; each time a puzzled physician told me it was not appendicitis. He didn't know what it was--could it be indigestion? I worked in hospitals, and my doctor colleagues were mystified by equally sharp chest pains, which were finally dismissed as stress induced. Eventually, I learned not to go to emergency wards, but simply to wait the pain out. (Years later I was befriended by a brilliant Emergency Room physician whose photographic memory recalled that the taking of white blood cell counts was developed to avoid removing the healthy appendixes of patients with FMF.)
As a naturopath and patient advocate, I could only deduce that my immune system was poor and for thirty years I experimented with all the known holistic nutrients, eventually arresting the constant fevers with a nutrient called Immuplex (by Standard Process Labs, this can only be dispensed by a naturopath, chiropractor, doctor or osteopath.)
My health drastically changed after 1984. In 1996, I was diagnosed with CFIDS, 1984 being a banner year for the CFIDS epidemic. Although one Melungeon activist vehemently states her belief that there is no CFIDS, that the only true diagnosis would be FMF, my life had a measurable borderline between the two. It was only after 1984 that I had recurrent bouts with pneumonia and long periods of exhaustion. Previously, the fevers, the pleuritis, arthritis and peritonitis would pass, and I could get on with my life in between assaults. While not as painful, the CFIDS was much less merciful and would leave me often studying ceilings. I can speak with some authority --whether Victorian or vigas, ceilings can be very dull. I was extremely grateful when the CFIDS resolved in 1998!
One might ask how the severe symptoms suffered by Melungeons could go generally unreported for three centuries. In the Hispanic New Mexican culture the saints modeled acceptance of pain. I remember my father never complained of any of his symptoms. And, in the general US population, we probably have the Puritans (and the Industrial Revolution) to thank for our deep distrust of any disability; even when the disability is visible, society harbors the suspicion that a disabled person may demand special treatment, be unpleasant, or be shamming. Not a club anyone wants to join.
And, in a culture that holds disability to be almost immoral--a dubious and manipulative excuse to avoid work and responsibility--the mere admission of pain (even to oneself) is censored.
Although I would never choose it, those years of recurring high fevers and pneumonia, the days, weeks, and months of being immobilized, did allow parts of me to examine what was important to me in this life. It was this perspective that inspired me to help found three Feldenkrais(R) Trainings--to share with the world what I had found most wonderful.
How did I stumble onto all this? I was online, researching a romantic tale of a possible ancestor, Chief Nathan Kirkland, and someone sent me a short email: "Nathan was probably Melungeon." Several of my mother's family had included Indian Chiefs--even bearing their Welsh (Blevins) and Scot surnames (Kirkland). Previously, all I had known of my mom's heritage was that she had the whitest skin I've ever seen, a logical consequence of having a British grandfather, her Welsh lineage, and belonging to the Wallace and Bruce Scottish clans. But then there were her Asian or "Indian eyes" which she proudly attributed to an American Indian heritage. My mother had been an invalid all of her life, despite which she wrote and illustrated 19 children's books.
Once connected to warm circle of Melungeon-L@roots.com, I first heard of the curious "signs" of Melungeon ancestry: shovel-shaped teeth, the Anatolian bump (a bump at the base of the occiput), the "white streak" of hair, the Asian fold of the eyes. Stunned, I recalled that my father had a white streak and when asked about it, always rejoined "Well, someone must have hit me there when I wasn't looking." As a judgmental child I recall regarding my Dad as a "couch potato" on evenings and weekends. Now I began to re-examine his tiredness, his arthritis, his diabetes, and his early death related to heart failure at 69. I also recalled his prettiest younger cousin, a successful stockbroker who was diagnosed in her early 50's with Alzheimer's.
Online there was a discussion of "tri-racial isolates," a term applied to Melungeons who, far from being "isolates," formed supportive communities, intermarrying with freed and escaped slaves, as well as Indian tribes. Several researchers have found that Elvis Presley was Melungeon; his family spoke proudly of their Cherokee and Jewish heritage. My mother wore the first natural I ever saw; her hair had tight curls, an anomaly in the browning photographs of her stolid pioneer family.
So it was with mixed feelings that I began for the first time in my life to hear the experiences of living in a "cursed" body from Melungeons. On the one hand, here at last was a possible explanation for the mysterious attacks that had limited my life. The medical books all even awarded FMF the highest rating for pain, the term "exquisite." It sounded like an adjective better suited for a jewel--exquisite--rather than a definition of agony. I was not surprised to hear a story of an 15 year old diagnosed with FMF who committed suicide.
On the other hand, I learned that the constant fevers and inflammations can create something called amyloidosis, a term I kept misspelling somehow. Amyloidosis is the creation of "deposits of an almost insoluble protein which infiltrates tissues. The tissues become waxy and nonfunctioning...The symptoms appear slowly and insidiously depending on which organ is affected." My doctor friend assured me that if I had FMF, it would all depend on my genes as some misspellings do not indicate eye, heart, liver, or kidney damage. The worst cases include renal failure or Alzheimer's, but heart failure is most common.
Rather than endless discussion of physical travails, I found the Melungeon listmembers to be keener on trading fond tales of their ancestors, recipes for 'choclat gravy' and humorous tales of old dialect and traditions. I have seldom felt so accepted--or met so many "tri-racial," open-minded and intelligent folk.
Since this abnormality is caused by a recessive gene, an irony finally hit me. My father was from a founding New Mexican family. A variety of research has shown the founding Spanish families to have included Portuguese, and the ousted ruling classes of Spain for 800 years: the Sephardic Jews and Moors. My "Anglo" mother, a New York artist, had dared to marry "out of her race," shocking for her time, even more so to have produced a "mixed" child, a proverbial "tri-racial isolate!" And 50 years later it turns out they could have both carried the same genes, struggling against social condemnation of their supposed mixed marriage!
(Below, my father's family, on left with his father who died quite young of "an unknown fever" shortly after this photograph was taken; and on the right my father with his sister and widowed Yaqui mother.)
As I continued to research, I phoned my favorite Spanish cousin to share what I had found so far. He politely interrupted, "Have you heard about our little granddaughter? She's been in the hospital for three days with a high fever and the doctors can't find what's causing it. It went away now, and she's coming home."
One of the most alarming "official" responses to Melungeons came in the 1920's. A petty American Hitler, Dr. W. A. Plecker, as first chief of Virginia's Bureau of Vital Records, determined to permanently "mark" all Melungeons, and those "claiming" to be Native Americans or Mexican, as "non-white" in state records--and to trace them should they try to relocate. Plecker had enacted through the Virginia legistlature "An Act to Preserve Racial Integrity" which mandated that people with any more than 1/16th of Indian, Melungeon, Malay, West Indian, East Indian, Mongolian, or Negro blood were prohibited from marrying a "white person," this law being retroactive. All birth, death and marriage certificates were to be forwarded to his office for the Plecker certificate to be attached. (A full copy of this infamous certificate is online: www.melungeons.org/certificate.htm.) This law was not repealed until 1967!
There is research being conducted in France, Israel, and at our own National Institutes of Health onhow to treat FMF. So far the most effective treatment is a drug called Colchicine (coincidentally dervied from a flower that originates in the Mediterranean) which can halt the progression of the disease. It sounded rather romantic, a benign equation. Many patients delightedly report a cessation or lessening of their symptoms.
However, ironically, Colchicine can cause some of the same symptoms as FMF (tiredness from anemia, muscle weakness, peritonitis and peripheral neuropathy) along with some very nasty side effects. It can inhibit leukocyte formation, arrest cell division, depress the respiratory center, depress bone marrow (from when we derive new red blood cells), cause anorexia (gee, I thought, maybe I could lose weight!), cause hair loss (not as appealing), and block absorption of Vitamin B12. This dubious drug also has no clear determination of toxic versus nontoxic doses, as toxic doses range from 5 mg and 65 mg. To treat FMF, usually a very small .06 dosage is prescribed.
Unfortunately, after a month this drug gave me peripheral neuropathy, and it took six months to recover from the symptoms. More fortunately, my response indicated to my physicians and researchers that I did not have FMF, as those with FMF quickly improve when administered Colchicine.
Extensive research is being done on children who seem to respond well to the drug. After the age of 60, it is harder for patients to accept the drug systemically. Of course, compared to renal or heart failure all of those side effects must be accepted. The latest research on Alzheimer's has established that amyloidosis plays a part in the dysfuntion of the brain and general trials are being made of advising the general population to take anti-inflammatories, such as aspirin, as a preventive.
On the Melungeon list I had also learned of a study being done now at NIH. Agreement to participate (with the right to refuse the more invasive testing) garners one a free genetic test, a test which can be costly.
Although I may have escaped this genetic "curse," the discoveries I made on this journey seemed well worth my sharing for the many people who may unknowingly be suffering from what is now a treatable condition. And so, I decided to share this story with you. I never did make that final genealogical connection to the Melungeon Nathan...but I am still an appreciative member of the warm and supportive Melungeon list!
For information on genetic testing at NIH:
Coordinator Jane A. Dean, RN, MSN (and a really nice lady, too)NATIONAL INSTITUTES OF HEALTH/NIAMS-ARB, Building 10, Room 9N214, 10 Center Drive MSC 1820, Bethesda, MD 20892-1820. Phone: (301) 435-8142/ 1-800-891-4437, FAX (301) 402-0012
For information on how Felicia applies the FELDENKRAIS METHOD(R):
you are at http://www.backrescue.com/
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COMMON MELUNGEON FIRST NAMES
Melungeon families often chose Jewish names, from Levi to Zephaniah, as well as names resonant with Turkish, such as Hoissam, Souleman, Sydenai. Other unusual names include: Dicey, Jincey, Malinda, and Dorcas or Darcus, Micajah, Dinselondy, Naaman, Alcidasa, Agia, Jorial, Levicea, Moneyea, and Cephea. Spanish-sounding names like Chavises, are also found as first names.
WEBSITE LISTING SEFARDIC NAMES
Spanish or Oriental Jewry names: www.sephardim.com
include the Cumberland Plateau of Virginia, Kentucky, North Carolina, West Virginia and Tennessee. For specific names of towns, and other information, see website: http://history.cc.ukans.edu/heritage/cousin/melungeon.html .
SOME MELUNGEON SOURCE BOOKS
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