You know you would be so much healthier if you would just eat some kale? I know I would. But every time I go into the health food store craving a smoothie I look at the menu and think: "I should get the kale/beet/carrot/celery special. That would be so beneficial for my system!" Then I walk out of there with the peanut butter/banana special instead. I'll order it with soy instead of dairy to rationalize that I'm doing a good thing for myself. But why didn't I get the kale? Shouldn't my brain's long-term desire for wellness outweigh my sweet tooth's demand for instant gratification?
I need to be especially vigilant of every bite that goes in my mouth and choice that I made to take care of myself. I'm one of 30 million American women with an autoimmune disease. Autoimmune diseases (like diabetes, lupus, and multiple sclerosis) happen when your body attacks itself for no reason. It thinks there's an invader; it revs up your immune system to fight it; but there's no one to fight. It's like a celebrity trashing a hotel room; knock yourself out, but you gotta sleep in that mess.
My vascular autoimmune disease is called Wegener's granulomatosis, and it generally destroys the sinuses, lungs and kidneys. Your blood vessels get inflamed, so blood can't get to tissues and organs and they die. I was diagnosed in 1999 after finding a tumor in my sinuses. The docs gave me steroids and chemo drugs to treat the Wegener's, but it chewed through my sinuses, nose, eyes, ears and the lining of my brain. I got big tumors in my lungs that cut off my breath. I had relentless pain in my joints and my head that prompted me to debate jumping out my window. I only lived on the 3rd floor, so I couldn't have done too much damage, but still.
The docs meant well but they had limited research on my rare disease. All they could offer was more drugs. But I was concerned that the drugs weren't helping me, and may actually have been making things worse. My friend Tracy, an artist living in San Francisco, insisted I join her at a weeklong Ayurvedic detox program in New Mexico. I'd never even taken a yoga class. I was going to New Mexico to detox with Tracy? I must have been delirious from popping too many Vicodin, but somehow I ended up on a plane.
I knew I needed a different game plan, but I was determined not to become one of those people who do yoga and meditate and eat kale. I was from New York, dammit. We smoke. We yell. We dye our hair and drink $13 cocktails. We do not use flaxseed oil or honor the solstice. Somehow that kind of stuff seemed weak to me. Fake. But that was before my Ayurvedic detox. That week changed me (you can read about it in detail in my new book, "Are You My Guru? How Medicine, Meditation & Madonna Saved My Life."). These nice, calm people dripped oil on my forehead and shined colored lights on my chakras and chanted mantras over me. They examined my tongue and make me do colonics and propped me up in restorative yoga poses. When the week was over, I FELT BETTER.
Uh-oh. It hadn't occurred to me that any of this floofy New Age alternative healing stuff was actually going to work. I wasn't going to dismiss the direction of my Western docs. But I did want to mitigate the damage that the drugs were doing to my body. So my mission changed: now I had to set out and find a balance between the Western essentials and the Eastern opportunities. Ayurveda led to acupuncture. Acupuncture led to herbs. Herbs led to hands-on healing, which took me to massage. Massage took me to a cranio-sacral practitioner just as my liver was starting to freak out. This healer, Alora, asked me, "Have you ever talked to your liver?
"Nah," I said, "but be my guest if you guys want to chat."
"Just consider it," she urged me. "Try to open up some communication with your body." I started to refer to my liver as "Laverne," as in, "No, I still haven't had a conversation with Laverne. Sorry, Alora."
When I finally caved and began to kibitz with my internal organs, I did it as a joke. "Okey dokey smokey, I'm a-gonna talk to my liver now, ha ha ha." I pictured Laverne as an older black woman, maybe in her early sixties, short on chitchat and big on efficiency. In my imagination, she often added colorful scarves or decorative brooches to accent her conservative suit from Talbot's. I envisioned her minding her own beeswax (or bile), managing my body's filtering business as she always had, when suddenly it went off the rails. Sure, she'd had to do some overtime in the last couple of years when those chemicals (steroids, chemo, antibiotics) had been dumped in my system. As if she didn't have enough to manage, what with that flamboyant nitwit Steve the Spleen goofing off all the time, and only the most minimal communication with Gail, my gall bladder.
The more detail I gave to my organs, the harder it was to pretend they were just body parts. I recognized that Laverne's well-planned, well-executed systems, which had been working efficiently in my body for more than thirty years, had screeched to a halt. Some God-knows-what hooligan cells created by my immune system showed up and made a shambles out of Laverne's entire work place. At first she probably thought it was some sort of practical joke from Thelma the Thyroid or one of her glandular friends, poking holes in her walls or scrambling up her enzymes. It wasn't Thelma. It was me -- my grief/lack of forgiveness/lack of effort/ overmedication/extremism/imbalance, depending on which guru I spoke to. It wasn't a joke anymore. I owed my body an apology. While I recharged on Alora's table, I silently offered a message to my liver: "Sorry, Laverne."
Now that I was officially one of "those" people, dialoguing with my organs and exploring spirituality with Buddhists, psychic healers and astrologers, my parents wondered why I wouldn't consult within my own faith: Judaism. They'd met a rabbi in Miami who told them he had an ancient, sure-fire cure for me. I simply had to get a punch of pigeons and rub them on me. They would absorb the toxicity and die, and I would live. Now, I'd dripped oil on my forehead, stuck needles in my skin, chatted with my gastrointestinal tract, shined colored lights on my chakras, and seriously considered drinking my friends' breast milk. In the hierarchy of nonsensical things that I'd tried in the name of health, there was no reason pigeon-putting was worse than anything else. But the "pigeons + ancient Jewish cure + lack of proof" combo was simply too much for me to accept. I had limits. Intentional animal sacrifice was one of them.
To this day I still don't know; maybe the pigeons would have worked. Luckily I haven't had to try them yet. By selecting elements of different treatments that have worked for me, opening up to spiritual options that spoke to me, and taking consistent doses of a more sophisticated drug called Rituxan, I've been able to achieve remission for Wegener's granulomatosis. I have no idea how long it will last, but I know it's my full-time job to keep myself well. I do that by working closely with my doctors, keeping a meditation/yoga/alternative healing practice going, alleviating stress in my life, surrounding myself with loving and supportive people, and yes, even sucking down some kale when I can.
Unlike some gurus I met on my journey, I don't believe we have the power to fix our bodies simply by willing ourselves well. But I do believe you can start healing yourself by making choices that help you. You know your body better than anyone else possibly could. When you assess what your (realistic) goals are for it, you can achieve them. Then you empower yourself by finding the doctors, healers and supporters who are willing to help you on your personal mission. Choose the best, most effective elements from all the options and decide what particular recipe works for you. Once you decide what you want to do, and who can help you to do it, a completely different kind of healing begins.
Wendy Shanker's new book is "Are You My Guru? How Medicine, Meditation & Madonna Saved My Life."
More on Alternative Medicine on Lemondrop:
How A Month On An Ayurvedic Diet Changed My Life













Comments:
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Wednesday 15 September
By Meg
This was a really great read. Thanks for sharing and posting.
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Friday 24 September
By Marta
Thanks for sharing. I'm also a WG patient, diagnosed just last may (2010) so still a rookie at this game, but it's great to read about your experience. It' opens up some doors for me.
Hope you're doing well and no sign of the insanity that lives inside.
Reply
Friday 01 October
By peter
Thanks for this great review, I, too are a sufferer of Wegener's Granulomatosis.
This is a fascinating, well researched book . But the heading for your article is "Alternative Medicine Cured Me". The implication is that Wendy has been CURED of Wegener's by her use of alternative medicine.
If indeed Wendy had been cured, this would be a miraculous, ground breaking claim indeed. In the world of medicine no one has ever been permanently cured of Wegener's. Nowhere in the book does Wendy claim to have been cured.
In fact she has achieved remission- a very different state of affairs, especially as she achieved remission buy using a combination of conventional and alternative therapies. This is made quite clear in the book- as is the fact that she continues to maintain remission by the use of immunosuppresant drugs.
Sometimes we see what we want to see in a book, and yes this is a great book, and a great review; but I felt it was important to clear up this small point . Thank you.
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Monday 11 October
By hausstauballergie
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Monday 11 October
By Katzenallergie
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