Last week the NYTimes published a piece about the actress Selma Blair and her diagnosis of MS. MS is another of the mysterious illnesses into which category fall CFS/ME and Fibromyalgia. For the first while, Blair was told by doctors that her tiredness was a function of being a new mother, and barely stopped short of saying “It’s all in your mind.” Eventually, after a struggle, she was formally diagnosed and felt relief that finally, she could do something about it.
This is a typical response to mysterious illness, both from GPs and from sufferers. People, women mostly, resonated to Selma’s story.
“There are some things about M.S. that certainly remain a mystery,” said Kathy Costello, the associate vice president for health care access at the National Multiple Sclerosis Society. “But a significant amount more is known now, versus 20 or 30 years ago.”
What if mysterious illnesses are the catalyst for transformation?
Yeah? After how many billions spent? What did all that money and research find? Well the disease is intermittent. There is no cure. You can take steroids, which break down your organs while giving you relief. There are symptom management strategies, but no one truly knows nothing.
I have a friend who used bees to force his MS into remission. He would lie down on his stomach, his wife would place bees on his back in a cross pattern and the bees would sting him. He would howl in pain but then the MS would go into remission for a considerable period of time.
“Most people with the disease have the “relapsing-remitting” form of M.S., which means that they experience a cycle of worsening and recovery.” (Kathy Costello again). Basically, it is an immune system disorder, or a ‘who the hell knows’ disorder.
Let me ask a couple questions. What if all mysterious illnesses start in your mind? What if you could stop them in their tracks by bringing forward the emotions you are suppressing using said illness? What if people who did so were considered courageous, not weak? What if you became so attuned to your inner self that like an expert mechanic, you could pop the hood, tinker around, find the offending fear or rage or sorrow, let it out, fully experiencing that moment and then letting it go? Leaving yourself in recovery.
Because I grew up with a schizophrenic parent, I’ve had about six therapists in my life. There was no way I was following in her footsteps. I moved cities five times when I was younger and always found someone new. As a result, this idea to me is not shaming or indicative of my weakness or inability to “measure up”. Every bout of therapy has given me access to new strengths and new solutions. But mental illness, even at the level of a cold is still considered such a liability, that people hide any manifestation of it, refusing to admit that they are the cause and that they hold the cure in their own hands.
Because I was acutely, daily, aware of schizophrenia I read widely and seriously, and the one theory I found that made sense, is that without schizophrenia human evolution would have been much much slower. The energy in a schizophrenic brain is so over-powering that ideas and theories and connections and then solutions, happen very very fast. This is certainly true of the schizophrenics in my family. The only problem is that their brains, driven by excitement, take the next step into madness.
What if mysterious illnesses are the catalyst for transformation?
What if mysterious illnesses hold the key to the next evolutionary step?
What if, buried in illness, is the wisdom that we, as a species, need?
24 million people worldwide have CFS; 300 million (or 3-6% worldwide) have fibromyalgia.
Last week I hied myself off to a psychotherapist on the island. Kendra, I’ll call her has 22 years of experience in Los Angeles and has treated many people with Chronic Fatigue and Hypothyroidism. This is extraordinary to me because in the 25 years I have been lugging this illness around, I have met in person no, repeat, no physician or naturopath who knows more than I do about it. 24 million people worldwide have CFS, and those with Fibromyalgia count between 3%-6% of the world population. 5% of the world population is 300,000,000 people. These are staggering numbers, and in response, many thousands of practitioners, research labs and government agencies are now involved in working out a cure. They are not getting very far. They know it is an immune system disorder, they think it has to do with the microbiome, and it is triggered by some kind of viral or bacterial infection that does not go away. But that’s pretty much as far as they’ve got People are bedridden for decades, and many do not improve, in fact, they get worse.
About six weeks ago I found Dr. Rawls in the States who contracted Lyme Disease after he had been practicing as a GP for several years. He was sick for ten years. While he was down and out he researched herbal medicine and came up with a constellation of herbs that work to destroy the microbes that trigger Fibro, CFS/ME, Lyme, Shingles, etc., all the culprits causing dysfunction. I’ve been on his program for six weeks and I feel very much better. I can work and I can exercise, though I still have Epstein-Barre Viral symptoms – that’s the mono virus, appropriate given myself as a teenager.
This is what I’ve done to heal myself: moved to the country, worked from home, found a peaceable mate, built relationships within my family, taken medication “to improve the quality of my sleep”, started Low Dose Naltrexone, constructed a nutrient programme with various doctors and naturopaths that is bleeding edge, learned to meditate, learned to pray, established a rock-firm spiritual practice, spent hours hiking hills with my dogs, bought four dogs, given up gluten, dairy, sugar and alcohol, built a healthy house surrounded by a conserved forest, monitored all my blood work and fixed anything that was out of whack. It’s a full-time freaking job.
Anyone who grows up with a schizophrenic parent is behooved to monitor one’s mental health, and I have had a half dozen therapists over the decades, even a classic Jungian in London, who helped me find the beginnings of my writer’s voice. I am intimately aware of my precious self and its various (sometimes amusing) perambulations right back to the year dot, and I’ve made friends with myself. I am conscious 60% of the time, sometimes more. But therapy I realized, specific to the illness, is something I’ve not tried.
Just prior to my visit, I’d been studying the role of the autonomic nervous system and CFS. There are several practitioners who insist the disease is caused by an overactive flight or fight response. This made sense to me. Much of my work has scared me nearly to death, and in fact, the first thing that Kendra established was that I’d fallen ill after two years interviewing torture victims and the falsely imprisoned. I’m no Marie Colvin but along with listening to Palestinian nurses detailing Iraqui soldiers slamming baby’s heads against hospital walls, not to mention being up close and personal to families who had lost children in Northern Ireland’s terrors, I’d spent eight months strung between New York and South Africa nailing down the rights to Nelson Mandela’s biography and spent his first weeks of freedom in his back garden. Exciting as hell, but seriously exhausting. Plus one was shot over and nearly trampled in one of those African stadium rushes which are blinking terrifying. This coupled with a sometimes hair-raising though fun and exciting family given to paranoia, rage and reality breaks, set me up for Autonomic Nervous System disorder. And all I have to do is shift myself over to the para-sympathetic nervous system (which is when you feel relaxed, rather than feeling ready to fight the Kurgan hordes or whatever) AND LET MYSELF HEAL.
Since that moment of revelation, a true Ah-Ha moment, I feel good almost all the time. Kendra bolstered this theory with the work of an overlooked physician, Dr. John Sarno, who taught at NYU, who said, ‘look, your body is talking you into this because you need it. Figure out why you need it and the illness will vanish. It might take some time, you’ll have to work with your mind, and maybe bloody hard, but you will recover and you will not relapse. Sarno insists that pretty much all illness can be related to uncathected emotions, including cancer. We give ourselves disease, in order to block uncomfortable feelings.
This idea is pretty much anathema to the massive CFS and Fibro community of patients. No one wants to hear it’s all in your mind because that means you are weak and pathetic and do not deserve to live. This, of course, is a militarist view and not helpful or deep or caring or useful. What people can hear is that “hey girl, you were so disciplined and hard-working, you blew up your nervous system and you have to find a way for it to heal.” This skates very close to New Age “if you build it they will come” philosophy. I don’t care. Right now, it is working for me.
In my mother’s time, what I experienced in a mild form and somaticized, was called a nervous breakdown and you were considered weak, rather than diligent and courageous. During the 18th century, it was called neurasthenia and you were considered weak and pathetic. Nervous system diseases, I believe, and surely this is obvious, are related to the blistering hot speed of change, both societal and personal. We have built ourselves a terrifying world, where people are hag-ridden by one imperative after another every day. I do not know the solution, but recognition, I learned from one of my many therapists, is at least half the battle.