December 10, 1981 I dreamt the following:
Walking along a pathway, sinking into the fertile earth almost up to my neck, I found moving forward extremely difficult. I was forced aside as a pack of people raced past, sirens blaring. As I sank into the earth I was reminded of planting tulips in the autumn chill. I saw the Princess of Disks, symbol of fertility and creativity. I was aware that the illness had forced me off the fast track as the world rushed past.
This was December 1981, I set the MS diagnosis aside and went to work in my perfume boutique. Statistics show that the last 10 days before Christmas account for 50% of perfume sales for the year, so I couldn’t take a break. Work, work, work and more perfume toxicity. December 18 I visited the Gynecologist who noted problems in emptying the bladder, perhaps a worsening of the endometriosis. I now understand the dreadful consequences of this female disease which impacts the hormonal balance and cramps up the bladder and body in general, thus impeding blood/cerebrospinal fluid circulation to trigger MS symptoms.
December 30, 1981 I took a ballet class. Barely a week after Christmas, exhausted as I must have been, I actually drove off to the studio in the Mission as though nothing had changed in my life. I struggled through the barre and the variations only to stop after a few ridiculous grands jetés (leaps with both legs stretched out in the “splits”). People looked at me askance. After class, flushed but ever enthusiastic, I announced that I was suffering from a virus in my brain but would soon be on the mend. I exited the industrial building into the frigid night air. That would be my last class as a “dancer”.
When I read posts by the newly diagnosed, I am reminded of myself. Like Icarus, I had been flying high when struck down, feeling all powerful and without limit in my aspirations. Nothing was going to stop me, I would overcome this obstacle as I had overcome so many before. Above all this malady wasn’t going to change me, I didn’t need to change. Well, it did change me, it got the better of me. So much for all that bravado. Transformation was the name of the game. But before I could become an actress in my own transformation, I did a last gasp effort at refusing responsibility. I handed myself over to the Chinese Doctor to be “cured”.
My MS diagnosis came well before the Internet, there was little advice available beyond the very conservative MS Society. I didn’t trust them.
January was always a bad month for me and I now understand why (this irrespective of the Perfume business stress.) Over the holidays I ate rich, sweet, fattening foods. All that Chocolate, Butter cookies, Champagne could only make me sick, whatever my particular ailments. So it was on January 15, 1982 when I visited the HMO Neurologist. He notes that I had been overdoing it physically and emotionally over the past month and that there had been little improvement in my overall status though there hadn’t been an overt“attack”. He notes a mild exacerbation and that the left leg and arm were weak, the gait clumsy. (This amazes me now because my left side entirely recovered several years later and it is now the Right side which is handicapped.) He wrote that he advised me to slow down and rest. Reading one’s medical file is a lesson in cognitive dissonance. What the Doctor says he said often has little relation to his actual behavior. It’s as though he writes for a school exam, but when the professor isn’t looking he cuts loose with what he must really feel, like why does he have to put up with these sick people’s demands? Don’t they know there is nothing he can really do even if he wanted to?)
My Chiropractor had referred me to Dr. Cheong at my request for a Chinese Doctor of herbal medicine. I remember stopping by the Doctor’s storefront off Chinatown one cold foggy January evening with my friend Richard. A plastic skeleton covered in black dots connected by lines running over the body, a fading poster with Roman Numerals referring to more dots connected to more meridians, some dried herbs spilling out of a basket, that was the display. An old world mystery beckoned from this display, I remember telling Richard I was confident I would find help there.
I developed a cordial, even family like relationship with the Doctor and his Chinese-American wife Jenna. The Doctor told me he had begun training in Chinese Medicine at the age of 10 under the guidance of a Master. He left China to come to California with his parents and set up practice towards 1975. This was only a few years after Nixon’s 1972 “opening” to China and a few years before Deng Xiao Ping’s modernization revolution which has totally transformed China. So Dr. Cheong belonged to an older, traditional China (even if officially the Chinese Government called themselves Communist.) Dr. Cheong amused me with his immigrant stories. Friends told him that when one makes a dinner invitation, guests expect to have napkins on their plates. So he carefully unwrapped the napkins he had purchased. And his friends laughed when they saw the table decked out with female sanitary napkins.
He was by far the best Acupuncture Doctor I have ever had. My appointments always began with me sitting opposite him at his desk to discuss my condition (and, it was hoped, progress). Then he had me lay my left wrist palm up on a small Chinese embroidered pillow to take the 6 pulses leading down from the thumb, 3 yang on the surface and the 3 profound yin. Then he did the same with my right wrist (for a total of 12 pulses relating to the 12 meridians. I would study the theory later.) After that he examined my outstretched tongue, observed the color of my skin and then my eyes, all the while writing Chinese symbols in black on a large white paper pad. I can’t remember how he described my condition using the five elements in Chinese medicine. (Wood, Fire, Earth, Metal, Water). Water (Kidney/Bladder) was certainly a major factor but how it related to the others, I can’t remember. He was the only Acupuncturist who did a proper diagnosis. At the first appointment he assured me he could treat my condition with Acupuncture and Herbs. So we set to work right then and there.
He had at least 4 cubicles with a bed in each where his patients lay exposed in their underwear, a blanket and a small electric heater keeping them warm. In this way he could treat 4 people in an hour, giving each one an hours treatment as he passed from one to the other. (That was the theory. He didn’t usually have 4 patients at a time. Sometimes my appointments lasted 2 hours, he really did his best to help me.)
We began with me on my back as he worked over the front of my body. I always held my breath in anticipation of pain at being pierced, but mostly his work didn’t hurt. He was a bit rougher than some Acupuncture Doctors, but the anticipation was most always worse than the reality. After placing the needles, he used tiny clips to attach wires leading to an electrical stimulation apparatus, and then he slowly increased the current until I couldn’t tolerate anymore. Sometimes, after the meridians had been stimulated, the points became more sensitive (which meant the meridian energy had opened up) and I would ask Jenna to turn down the current. He almost always treated the Gall Bladder 34 point outside the knee, saying this Meridian was always important in treating MS. Points on the head and/or face, points down the middle of the chest, points in the abdomen, then on to the leg down to the feet, maybe 20 needles in all for the front of my body. After at least a half hour of treatment Jenna would remove the wire clips and needles so that I could turn over and he then performed the same procedure on my back, always placing needles down the bands of muscles parallel to my spine I now recognize as the Bladder Meridian (Water). Sometimes when I had cystitis he worked on the buttocks around the tail bone. That hurt. And the Kidney 1 point in the middle of the palm of the foot was a killer. I forbade him to use it again.
He preferred Western clients because they paid his fee of $30 (which wasn’t high you’ll admit, although at first I think I went four times a month which did stretch my finances.). He complained about old Chinese ladies who paid with “lucky money” tucked in a small red, gold embossed envelope. He couldn’t refuse these envelopes and usually would find only $1 when he opened them. “Lucky” for them, not so much for him.
After the treatment I dressed to go into the front room where Jenna filled the Herbal prescription Dr. Cheong had written out (in Chinese of course). A many drawered cabinet held the “herbs”, which included much more than seeds and dried leaves, including dried insects, snake skins, dried up body parts I couldn’t identify. These were the real thing. (Later in France the “herbs” would be ground down and mixed into a fine powder.) Jenna gave me several packets in a brown paper bag, telling me to boil down the contents of each packet, repeating the process with the same “herbs” the following day so that each packet lasted 2 days. While the fragrance of the herbs was “pungent”, their taste was ghastly after having been boiled down into a thick, dark brown “tea”. But I dutifully followed the directions to the letter, determined as I was to heal.
January 9, 1982 “Have been thinking about the loss of the use of my body. Can no longer dance, find even walking difficult. I will no longer know the pleasure, the pure delight of my own physical well being and prowess. How did this happen? Tendency to be drawn into nebulous, ultimately destructive love ties ending in ruin… am absolutely finished as a dancer. I haven’t quite believed it, or dealt with it.
January 13, 1982 “ I am entering uncharted territory , I can’t return to my former self. Everything is new and fraught with danger, pitfalls There are no longer any established certainties. I must begin anew, forge a new personality.”.
My diary entries are pre-occupied with stressful interpersonal relationships, virtually nothing about healing. What futility. A brief mention late January of an appointment with the Chinese “herbalist” though nothing about what he did, about acupuncture.
February 21, 1982 “Very painful 10 days. Foreboding.” So after a month of acupuncture treatments my abdominal pains were worse, not better. I now think the treatments were stimulating the bleeding. I reluctantly asked the Chinese Doctor to stop working on the pelvic region and the meridians related to gynecological disorders. On March 31, 1982 the HMO Gynecologist noted I had had an episode of pelvic pain accompanied with a bladder infection 6 weeks previously, but though he considered the endometriosis to be residual, he put me on Danazol. Quote from Wikipeda “The agent is fat-soluble. It is an isoxazole of testosterone with isolated weak androgenic activity and no estrogenic or progestagenic effects.” It suppresses ovulation, thus preventing development of the endometrium which is sloughed off every month in menstrual bleeding. It can cause ovarian cancer. (Great)
No diary entries between Feb 26 and April 1, 1982.
I continued acupuncture treatments for the MS. On at least one occasion I came to my evening appointment with severe symptoms in my right foot so that I feared being unable to walk. Ninety minutes later when I left the Doctor’s office the symptoms had entirely disappeared. What does that have to do with an immune system “attack”, I asked myself. Now I can clearly see the blood must have been backing up to injure the brain or spine and the “energy” therapy revived the proper circulation. The treatments did not always lead to such a dramatic improvement, but in general they kept me going. When I next visited the neurologist on July 12, 1982 he noted “patient believes acupuncture helps her MS symptoms”. He concluded that the MS was the same as at my last visit (in Jan?) and I was put on a 6 month return schedule.
April 1 I dreamed that a fellow dancer told me I wanted to be mothered. Yes, this was true. And this raised the question of taking care of myself, of nurturing myself.
April 1 I feel trapped by my husband who had imposed the business on me which was wearing me down. He wore me down even further with his negative carping. I was “spoiled” “lucky to be with him”, in a word, dependent and worthless, especially now that my dancer’s career was ended. While I was aware of a difficulty in walking and occasionally the use of my hands, my handicaps weren’t visible, I didn’t then limp and my husband could entirely ignore my health problem, which he did - other than be annoyed at my “lazy” inexplicable fatigue. I continued to have “mother” dreams. My sister “always felt acutely this lack of being mothered. It must count for something. I always felt an orphan, that I was on my own, that I raised myself…No mother.” I was still going downhill. Running the perfume boutique exhausted me leaving me no time for writing or any other creative project. I desperately missed life in the theater which was obviously a thing of the past. I needed a creative outlet and was being buried alive in a business my husband had wanted me to open. And I was SO tired. My husband wanted no part of any MS disease, he ignored it.
On July 26 the gynecologist notes I was being treated for endometriosis, he had prescribed in April a 6 month course of Danazol , and that I would be going to Paris in October.
My husband and I did travel to France for 5 weeks October-November 1982. I was amazed that, in spite of the exhausting long flight and jet lag I was reasonably strong, in some ways I felt better. The reason is obvious, I had escaped the “toxic” perfume fumes (not to mention the shop itself.)
I had had to admit the Danazol calmed the endometriosis with all its complications – terrible cramps, pelvic pain, cystitis and MS flare-ups which a year later I would analyze in great detail. But during my French trip I noticed that the veins in my arms and legs had swelled up so that I feared some kind of stroke complication. I attributed this to the Danazol and stopped taking it and, indeed, the symptoms disappeared. I recalled that I had stopped taking birth control pills in 1969 for fear my head would “explode”, and that I also had suffered from migraines. All of this impressed upon me the connection between hormonal therapy and the vascular system and the potential for a stroke like incident, even though the Danazol was designed to suppress female hormones.
Return to reality, I hit bottom after the Christmas rush. I was a ruin, could hardly move for at least a week and dragged around for months thereafter. I was forced to admit that the CHINESE DOCTOR HAD NOT CURED ME. While the the Acupuncture seemed to diminish the MS symptoms thus slowing the creeping paralysis, I continued to weaken. I didn’t think the herbal teas were helping me, they began to make me nauseous and I asked to stop taking them. The Doctor wasn’t pleased, he said I needed them. I stopped the herbs before the end of 1982.
My brief history for April 1980 through Dec 30, 1982 reads:
April/May 1980: Multiple Sclerosis develops. By September had recovered sufficiently to resume dancing.
September 1981: Open perfume boutique. Toxicity. (Big health mistake)
Spring 1981: First real onset of insomnia. (Right here we have an indication of metabolic dysfunction.)
Sept/Oct 1981: Health begins precipitous decline:
- Endometriosis pain increased in intensity and new areas were affected, specifically the lower abdomen and bladder. Pain accompanied by increased bloating of abdomen.
- At the same time Multiple Sclerosis (MS) flared up, gradually beginning to affect the legs. Not fully aware of what was happening until December. Last Ballet Class Dec 30, 1981.
April 1982-October 1982: Took Danazol. Improved Endometriosis in general and the MS simultaneously.
December 30, 1982: Endometriosis “attack” severe, renewed swelling of ovaries which led to an MS attack in January 1983.
Men might find this discussion of no interest because endometriosis is a female disease. But I now understand that these endometriosis “attacks” exacerbated the MS because they stressed and cramped the body so that the brain fluid circulation must have been severely restricted. These attacks undermined my health in general which could only further reduce blood/brain perfusion not to mention cerebrospinal fluid circulation from the back. The back musculature was so seized up and rigid that it seemed to pull the vertebrae out of alignment. The cramping also hindered flows through the urinary tract leading to infection. In 1981 the MS began to flare up along with the endometriosis. I can now understand why. Contrary to received wisdom, I now believe that the primary problem doesn’t lie in the immune system so much as in the fluid circulation bathing the Central Nervous System. This might strike some as simplistic, but I consider MS to be largely a question of fluid mechanics which ARE quite basic.
For men as well, whatever ails them to cause the body to seize up or restricts blood/CSF circulation may trigger MS “attacks”.
I now understand that the Acupuncture opened the blood/cerebrospinal fluid circulation. It relieved body tension and energy flows in general. There are those who say “I tried Acupuncture and it didn’t work for me. So there.” Acupuncture was developed in China over thousands of years of observation and practice. Some Doctors practice a bastardized form of Acupuncture by integrating it into the allopathic model. One begins with an allopathic diagnosis and then uses formulas to treat it. I’ve found that formula Acupuncture doesn’t work, that those who follow the Chinese model are likely to be most effective.
So I hit bottom January 1983. “MS rapid one week decline, loss of nerve function hitherto unaffected. Feeling in bladder reduced, insufficiently emptied on urination , infection results. Severe insomnia further weakens vitality.”
By January 1983, after a year of treatment by Dr. Cheong, I realized “Father” couldn’t fix me. That realization was the FIRST BIG STEP towards healing. Many people make the mistake of handing themselves over to an authority to be “fixed”. No, I needed to “fix” myself, take care of myself. Of course expert therapists will be called upon. But I needed to assume responsibility for myself, to change what needed changing, to become involved. In this sense Multiple Sclerosis is a health inducing disease because there is no competent authority to effectively treat it, it is considered “incurable”. Once the patient realizes this, she can set out on the path of healing.
And the healing is HOLISTIC. For me, the Multiple Sclerosis “cure”, cured everything else.
And guess who launched me? My mother. I traveled north to Seattle in January 1983 to visit her. She had collected articles – some provided by her mother and some by her friends – about healing MS. I didn’t pay much attention during my visit, I didn’t even want to admit I needed help (in fact I felt humiliated that I had a “disease”). I tucked the information away in my suitcase for future reading. But ultimately it would prove invaluable.
And now I will conclude with a tale which I find amusing. Since I had issues with female jealousy, this incident was a warning about what to expect should I move to France. Even though I spoke French (not too well at the time), I didn’t speak FRANCE in the social sense. At the time I was an American young woman with an American way of seeing things. My French born husband Jean had come to the USA for his University studies the year I was born. We lived in San Francisco and generally vacationed in France. The following comes from my journal, the names have been changed.
October 1982 – Dinner with the Godon family at Tours in the Loire Valley.
My husband Jean and I were invited to dine with Jean-Pierre Godon and family at their home in Tours. I wasn’t warned in advance, I had planned to stay home and nurse my cold while Jean took Francois (our host) out to dinner when all of a sudden at 19:30 Jean tells me we are invited to dine with Francois’ brother in Tours. It made me cross to be told so late. Had I known I wouldn’t have taken a long walk during the afternoon which tired me and I knew it was unwise for me to go out on a rainy cool evening for an inevitably long social engagement. (I should have remained home in bed.) Doubtless we were being honoured by this invitation, but it was an honour I could have well have done without. Let’s see why.
We arrived at a nice old townhouse, three stories high, nicely appointed circa 1900. Jean thought it resembled a San Francisco Victorian.
We were subjected to a display of smug self satisfaction – a narcissistic self entitlement of enormous proportions, a river of sickening sweet syrupy self satisfaction.
That afternoon Jean had found Mme Godon charming, so I wasn’t prepared for the family’s behavior. (Insert: Except now, upon reflection, I think I understand what happened. Jean had charmed Mme Godon which is why she invited us at such short notice.. And then he arrived with a lovely young wife 20 years his junior. Poor Mme Godon, this she hadn’t expected. So she engaged the entire family in her revenge. (My husband was very naïve about female psychology.) Mme Godon, while superficially friendly, was actually quite cold with an evident wish to be disdainful. Fattish, large double chin, flat face with a triangular piece of nose pasted on, brown squirrel eyes, straight eyebrows, nondescript invisible lips. Of course, mine is not a flattering description but I found her very offensive.
We met all but one of their five children (4 girls and 1 boy).Marianne, who had spent a year in Charlotte North Carolina, was too embarrassed to speak English. Her sister took a distantly superior attitude. After the sister’s boyfriend came to pick her up, Mme Godon informed us that the boyfriend was the “brain” of Tours, having attended the Ecole Normale Superieur enroute to studies in Electrical Engineering at Grenoble, his sister being even more brilliant. Their mother was a “polyglot” being half Italian and half Polish, she spoke Russian, French and English as well. Thus we were informed of the Godon’s superior social status and relations and were everywhere and in everyway reminded of same. Furniture, books, their conversation in general boring but ever reinforcing the question of status.
At table Jerome (about 14 years) and Fabienne (about 12) were reminded of their manners (“Oui Monsieur”) with that ever present attitude of self satisfaction des enfants bien elevés (well raised children) (That morning Francois had told us that a young man is carefully watched as he eats “le coq”, a soft boiled egg in the shell, to ascertain if he has been well raised or not.)
One could surmise that one’s table manners were minutely scrutinized. Somehow basic civility was of no consequence, that is to say, my Grandmother’s hospitality at making one’s guest feel at ease, comfortable, showing a regard for the other. and the world. The Godon’s display of superiority reduced the guest to a spectator in their self glorification. Mr Godon did ask where I was raised and looked slightly pained at my response as though my French was so utterly bad it was painful to hear. (No wonder their daughter didn’t dare speak English even though she had spent a full year in the States.) Mme Godon obviously liked to talk – the two of them in fact enjoyed their own conversation (such as it was) and weren’t much interested in anything outside themselves. On solar energy, events in the US and the world, their interest was perfunctory. Mme Godon kept staring at me with blank brown eyes.
As the only female guest I was the first to be served. For dessert Mme Godon placed the silver spatula under the lemon tart and gave me the distinct impression she meant me to take it (though I preferred not to). I reflected on what I should do and then decided to take it. Thereafter she made a big display of giving the others their choice, reserving the children for last since, being well raised, they would say they had no preference.
We returned to the salon for coffee. At one point Mr and Mme Godon competed with one another as the most aggressive conversationalist. The subject turned to the “Moonies” and religionaries in general. (Earlier in the evening I had mentioned that President Reagan had extolled the Rubik cube as an example of the American free enterprise spirit, remarking derisively that in fact it had been invented by a Hungarian. Mr Godon wasn’t interested. – or maybe he admired Ronald Reagan.)
Every time I tried to speak, I was interrupted. Finally I expressed my impatience and disapproval when Francois interrupted me (though he wasn’t by far the worst, I reacted after a long string of interruptions.) Jean asked me what I wanted to say. I shook my head, but he insisted. I spoke of the lack of a left wing party in America, that there was no outlet for social grievances which resulted in a sense of hopelessness. I contrasted this with the Peoples Temple and the Moonies who sought money and power by attracting the middle class, citing as an example a girl who used a “Moonie” attorney to sue her own family. I couldn’t find the word for demands or grievances (“revendications”) which Mme Godon finally supplied to her husband who again looked pained at my French. (I was by then very tired and had a runny nose.) (Contrary to the Anglo-Saxon custom of allowing each to speak in turn, the French interrupt each other constantly. I would later learn that what I considered rudeness wasn’t unique to this family.)
Somehow all this, my displeasure at their basic lack of civility, sank in, especially to Mr Godon. I kept my pride intact and looked with displeasure at THEM and could hardly wait to leave. Francois allowed us to escape. As we left Jean invited them to San Francisco, and I said “et vos enfants” (and your children) at which Mr Godon looked worried, somehow unsettled.
I had yet to endure the smug look on Jerome’s face. The children were ever ready for a subject of mockery and found it in my rubber rain boots, “so practical like all Americans” remarked Mme Godon. I would hate to be subject to their mockery. Of course their mother had given them permission for this display of ill bred behavior. It really shocked me as I had done nothing to deserve it other than exist. (And in general I had always been well received by Jean’s friends, family and acquaintances.)
For me this family is almost a caricature of the French provincial bourgeoisie at its worst. Unfortunately this was to become my misfortune over 10 years later.
Tags: Multiple Sclerosis, MS, Acupuncture, Endometriosis, MS treatment, holistic, Chinese herbs, MS Cure