Sometimes you don’t know something until you say it out loud. And sometimes you don’t know you’re going to say it out loud until you hear yourself saying it. In a leadership workshop a friend once took, she told me she learned of different thinking-through-conversation styles. One was to not plan at all, just talk and know where to go from what came out. Another was to “try things out” by saying them, and see if they sounded right or true. This was the most prevalent style. The third was to think on things carefully before speaking them. This created a very deliberate and somewhat serious communication style, and was somewhat uncommon. I tend to fall into this last category, which has its pitfalls, so I surprise myself every now and again when my verbal communication style demonstrates that the exception proves the rule.
That’s why I was so surprised afterwards that I heard myself declaring to my Neighbor X, “I want to live!” We weren’t talking about my multiple sclerosis, or his diabetes, cholesterol numbers, or chances of cancer. We had been talking about identifying edible mushrooms that grow in our neighborhood, and distinguishing them from the deadly ones that can also appear.
It’s essential to be able to distinguish agaricus campestris, and its close relatives, characterized by a licorice scented odor, and a noticeable “skirt on the stalk,” short stature, stark white cap, and tendency to fruit in an evanescent fairy ring, from agaricus xanthodermus, which turnsyellow when you scratch the cap and give digestive discomfort, from a couple in the amanita family, which could look very much like these other two, but are deadly if ingested, and have forbidding common names such as “destroying angel” and “death cap.” Neighbor X claimed had seen these on campus.
(I now know enough from my reading and gathering that amanitas really do not look very much like the agaricus family if you know what you’re looking for, and don’t smell like them either. And I’ve never seen one in the spots I must often pick from. Still, good not to be glib.)
People are funny. Most people I know, all dear to me, though interested and supportive, seem to have their own version of how this way of eating really only applies to me and my situation, since I have MS, which somehow trumps every other chronic situation in their minds as more terrible and serious and dreaded. Dear Neighbor X has a particularly quirky style of this tendency. He is a diabetic, with several complications arising from that, and also a dry alcoholic. He struggles with serious depression at times. At first, years ago, he was amazed and interested in what had produced such a remarkable transformation in my appearance and mobility. He wanted information. I offered to send him a bibliography e-mail I had typed up for a few interested people. He somehow glossed over the references to how this diet helps type 2 diabetes, and proudly told me he’d sent the information along to a friend who also has MS. Then he would update me about whether the friend had tried it or was sticking to it. He has never expressed any interest in trying it out for his own condition, one that it is way more famous for helping than it is for those with MS.
He continues to want to give me herbs or plants that might help me, which I truly enjoy. I have learned interesting things from him about these herbs and plants. But it is still as if I am the sick one and he is not.Very sweet and well meaning. All fine with me. Still, the disjunction is interesting to observe.
Once he said to me in reference to my diet that I was “a fighter.” It’s funny to me that eating fruits, vegetables, grains and beans makes me a fighter while eating meat and fat does not. I have turned this over and over in my deliberate mind ever since then. It’s not a term I ascribe to myself, or even like very much. I know it’s a time honored metaphor for approaching disease, but I don’t like using language that says I will win the battle, beat MS, etc. Maybe this is because of the CP. I never thought of that in terms of a battle either, though I battled with myself a lot about it as I came of age. It was always “there,” to be addressed, and finding the best way to work around it, with it, in spite of it, etc., was more the point. How to live well with it. So I guess I have just applied this to everything else that’s occurred since.
I don’t think of this as an attitude of defeat like some might. I notice it keeps me from getting hung up about a particular result, and instead allows me to immerse myself in whatever healing process I choose. And I also notice that so much violence, whether in action or word is simply unnecessary. So I try to speak as I try to act. Avoiding what seems to me unnecessary violence on any level.
However, I recently had a sharp surprise that gave me an insight into what might constitute my style of “fighting.” From time to time I visit a web site called Today’s Poem. Each day a poem is featured, with a little bit about the author and the publisher or journal where it appeared. Mostly it’s contemporary poets, but I’ve even seen and enjoyed a translation of a poem from Virgil. Earlier this summer I stopped in and much to my delight the featured poem was new work by someone I knew in my grad school days. Another poet about 5 years older than me who had come to interview for an assistant professor position where I was getting my MFA. We had all liked her and her work and she had gotten the job. She and I instantly got along, finding affinity in the fact that we were both pregnant for the first time. We each had sons six weeks apart, and so could commiserate about the perils of being in workshop and having your milk let down. Fun stuff like that. However, (I’ll call her Poet Y), Poet Y’s husband, a painter and sculptor, did not like the west coast or California much. While he worked on his art, and occasionally sold some, she provided the daily bread and butter for their new family. Within a year, Poet Y was looking for another position back on the east coast. During the time she was still here, however, we workshopped poems together, and puzzled over some very odd and sudden symptoms she had come up with: suddenly losing control of her legs, her eyesight. Then they would both come back. She got checked out extensively by her doctors. Nothing was found at the time.
We continued to correspond off and on over the years. Her career flourished in the academic sense: a job at a private ivy league type college, a new book. But she was also subsequently diagnosed with MS. When I was diagnosed a few years after her, we talked on the phone. She was doing the traditional route, I the alternative, using lifestyle changes and diet and bodywork to help ease symptoms. It didn’t seem odd we were taking different approaches, since she had once laughingly told me that because in her youth she had tried every drug she could get her hands on, she was at home taking meds. I had done virtually none of that myself, and avoided medication of any kind whenever possible. (In the whole time I’ve had MS I’ve taken just one course of antibiotics when I received a puncture wound from a feral cat I was trying to feed. A red line started moving up my arm, and a friend took me to the doctor. While he always allowed me my alternative ways, this time he said if you don’t take it, you’ll end up in the hospital. I took it.) I remember she sent me a book by someone in England who had done well with diet and taking evening primrose oil, which was all the rage at that time. It was as if she thought maybe I would actually implement suggestions, while she knew she wouldn’t.
Sometime after that she revealed troubles in her marriage. A rather blatant infidelity made public in a small town. At first she called to say she was through. He was moving out. As a friend, I listened and supported as best I could. But she seemed to want more: direction, advice. She asked for an astrological reading, which is one of my vocations. I made her a tape.
Somewhere along the line, the tide turned. She let the husband come back. They talked. He also wanted a reading. But then the tide turned again. Through Poet Y, he accused me of being biased against him. Poet Y and I didn’t fight, but it was awkward, and hard to know what to say. They stayed together, and our correspondence withered in a natural way. I would think of her off and on and wonder how she was, but we were both so entrenched in surviving day to day in our different ways that we didn’t reconnect.
So when I saw some new work of hers, I was delighted. I wrote to another poet friend of mine I correspond with and send work back and forth with that I had seen Poet Y’s poem. She responded that she had read the new book in question, and that it was excellent. In a big wave of enthusisam, I immediately requested it from the library. Also riding that wave, I tried to find Poet Y on the internet. Not being on facebook, the best I could do was the phone number of the English Department she teaches in, which I called and received her e-mail from. I wrote her a bright “saw your poem on Today’s Poem site, let’s catch up” sort of e-mail. Still have not heard back; I chalked that up to it being summer, her maybe being gone, not feeling well, etc.
Meanwhile I began the book, which had won a literary prize. It was outstanding and heart breaking and beautifully, powerfully written. But on a personal level it devastated me. Page after page I read that the aftermath of our parting had been filled with repeated chronic infidelity and betrayal, and yet she had seemingly stayed in the marriage through it all. The husband’s artwork was still on the cover. The pages were also filled with wrenching poems about how hard Poet Y had struggled to accept the MS, how brutal the treatments, how empty the traditional forms of support. It was as if our lives had gone in inverse directions. She had achieved professional success as a poet in academia, no small feat, however marginal it may be in our society’s big picture, and I had dropped off the map almost entirely where that was concerned. Her personal life, at least as depicted in the poems, seemed filled with anger and agony and unsparing desolation and loss about what the MS was doing to her, and this view of it, seen as the inevitable conventional truth about such illness, had won her a prize. My life, having to stop teaching and often even writing because I simply did not have the ability to do it well or consistently any longer, going on Social Security Medical Disability because it was what was available to me, had been full of gentle alternative experiments and no drugs. All of these helped for a while to some degree, and led me to this way of eating, which now forms the foundation of my slow motion miracle in healing. It has also led me to slow, steady improvements in mobility, stability, flexibility and cognitive difficulties, instead of a downward spiral of debility. I can also claim remarkable improvements in appearance and energy, reversal of any additional disease progression, however incomplete, and a quality of life filled with love, hope, compassion and humor, despite the hard times. I am also writing again regularly, after years of not being able to for various reasons connected with the MS.
My initial reaction to my devastation was “I must be a frsud. I must not have MS if it hasn’t affected me in this way, because this is the REAL way.” Luckily for me, I observed myself thinking this thought before I dived full bore into its emotional reality. That itself I consider one of the more subtle but very valuable side effects of following this way of eating. A friend from the McDougall discussion board had also reminded us in her journal there about what comes up in meditation when you “watch” the life of the mind. I began watching what was coming up and thought, “Hmmm. Why is THIS my first reaction?” The answer to that is complicated, having to do with being born with a disability and progress always being measured in terms of how I compensated to achieve at least the appearance of that illusion called “normal.” But for once I got substantially beyond it. Instead of diminishing myself for my “woo” or “airy fairy” or “alternative lifestyle” tendencies, I saw how what I had done was a matter of life and death. It really was. And I saw it that way. And that my “fighting” energy comes in the form of my continued refusal to submit to treatments, choices and other people’s notions of what my illness and disability means or predicts for me. It’s not a fight to get it all gone. It’s a kind of fight to live it in the most healing and rewarding way possible. Which this way of eating has vindicated for me.
So at least within myself, I stood up tall, and knew that I was not a lightweight, despite my preference for less heavy-handed approaches than those offered by traditional medicine and science. That in so doing, I had saved my own life thus far.
I like to joke that I now may well live to an annoying old age. I like to joke about the significance of this so as not to make others feel bad about what they are eating, what they have chosen. But at the same time, I have realized that this is no frivolous decision, and I was led to it throughout my whole life by my persistence to find the most healing way to approach my difficulties.