I Want To Live

by moonwatcher on December 12, 2012

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.)

basket of sunlight and wild mushrooms

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.

 

Maria

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{ 28 comments… read them below or add one }

1 Abby December 12, 2012 at 10:37 am

Wow. What a powerful story. Thank you.

I agree with you about the “battle” metaphors. Too much of that and you become a person who is at war with her own body. But what you are doing takes strength and courage, and I think that’s what your neighbor meant.

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2 moonwatcher December 12, 2012 at 2:18 pm

Thank you, Abby. I really appreciate your understanding and feedback.

Maria

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3 Joy Stoermann December 12, 2012 at 3:06 pm

” I have realized that this is no frivolous decision”…LOVE this comment…it is so full of truth. I believe we are led in the way that is right for us…and if we follow the crowd it is due to fear of standing against the loudness off the throng and causes our deafness.
It is so sad to read poetry so pain filled, esp. when you know it is due to a life that could have made different choices.
may your singular voice be heard by those in need of strengthening,
Joy

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4 moonwatcher December 12, 2012 at 5:00 pm

Thank you for reading and for this beautiful comment, Joy.

Maria

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5 dogsnoseknows December 13, 2012 at 9:06 am

With regard to our cultural attraction to the metaphors of battle, warfare, and fighting to get where we think we need to be:
“… the need is now for a gentler, a more tolerant people than those who won for us against the ice, the tiger and the bear. The hand that hefted the ax, out of some old blind allegiance to the past fondles the machine gun as lovingly. It is a habit man will have to break to survive, but the roots go very deep.”
― Loren Eiseley

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6 moonwatcher December 13, 2012 at 9:21 am

Hi dognoseknows!

Loren Eisley is one an old favorite of mine. I gobbled up his books in college because of a professor who thought I would understand them. Thank you for reminding me he said this so eloquently. What a lovely comment to discover upon opening up my computer this morning.

Maria

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7 Nicole O'Shea December 13, 2012 at 9:23 am

Maria,
When I was in high school, a boy signed my year book with a confession of a crush he had harbored for a long time. (It was awkward, as I was good friends with his girlfriend and I unknowingly handed it right to her to sign after he wrote it.) Anyway, another dear, hilariously funny friend, signed it after the two of them, and he just wrote next to the confession, “What John said.”

So I begin with, “What Abby and Joy said.”

And, although I am a little self-conscious about my tendencies towards lists, in no particular order:

1)”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. ”

I 100% – NO, actually – 1,000% have experienced this, over and over and over. Denial is a powerful thing.

2)”Once he said to me in reference to my diet that I was “a fighter.” ” and “It’s not a term I ascribe to myself, or even like very much.”

I know! Why is eating this way fighting? Why is fighting such a valuable thing? Where is the love, quite literally? It’s loving to yourself and the animals you no longer consume to eat this way. It is compassionate, nourishing consumption. Acceptance is greater than resistance in so many ways; it leads you to creative adaptation and co-harmony with the “dis” in any state. (And I am not even getting into how we are all the same stuff and what you do to another is exactly what you also do to yourself. And I don’t like to think of myself as airy-fairy either, but it is work at times, LOL.)

3)Your poor friend. I am glad for her professional and creative success, and I very much hope it gives as much back to her as she has lost in her difficult life.

4)”My initial reaction to my devastation was “I must be a fraud. 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. ”

I have gone down that path so many times! And while there is no longer any doubt in my mind on a regular basis that I have what I have and am doing so well in spite of it due to my diet, odd, unexpected exposures to others’ experience with the same or similar diseases can throw a mental real curve ball (and visits from my parents,lol)

5) So glad to hear about your experience with the life of the mind! Not a pretty place always, is it? But also sublime.

6) You had the right address! And I thank you so very much.

7) I think about all the time you could not write and I am so thankful for myself and everyone else that you now not only CAN write, but DO write and share it in such a way as to truly help, inspire, support and guide others in need, or who might know someone in need. A gracious and magnificent feat of special significance.

8) I want to learn more about mushrooms and mushroom picking.

Much Love,

Nicole

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8 moonwatcher December 13, 2012 at 9:36 am

Dear Nicole,

I love your lists! This one was over the top for me. I laughed out loud at number 6–hooray!–and then literally cried at number 7. Thank you so much. I am always glad when our “life of the mind” (and body–and heart–and spirit–) experiences converge. And, oh, the high school year book thing. I found out through one of those signings that a very cool boy I had nearly been afraid of had long admired me, and wanted to know me better. I still have that yearbook. I woke up reflecting on those times this morning, for some reason, long befoer I ever got the computer. Thank you for bringing back more of the emotional poignancy and honesty that being able–and willing– to write–even signing a yearbook–can bring. I am blessed by all these amazing comments from you, and all my amazing readers, one and all.

much love back,

Maria

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9 carollynne kelly December 13, 2012 at 9:31 am

I feel so sorry for that friend with the cheating husband, and it is all too common to blame the wife for putting up with it too! Youare an amazing lady!! love your writing style!

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10 moonwatcher December 13, 2012 at 9:38 am

Hi carollynne,

Thanks for this kind comment about my friend’s heartbreaking situation, and the way I wrote the story, and for being one of my amazing readers.

Maria

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11 Kimberly December 13, 2012 at 10:32 am

I’m not a writer but your words really resonate with me. So enjoy your thoughts and how well you can communicate them. Thank you. I’ve been on this course of eating for six weeks now and just knowing that I’m feeding my body what it needs to thrive is exciting. Your words help me to realize there’s other people out there with the same struggles with the same well meaning words of friends and family.

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12 moonwatcher December 13, 2012 at 10:42 am

Thank you Kimberly! It is wonderful to read how my words resonate in your own journey with this way of eating.

Maria

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13 Shelley Griffee December 13, 2012 at 10:55 am

I have received great pleasure reading your posts. This last one brought to mind a book I was interested in but have not yet read. Apparently the primary focus is parent/child, but as we learn to care for ourselves and others it is perhaps still relevant. You also may find I interesting. Far From the Tree by Andrew Solomon.

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14 moonwatcher December 13, 2012 at 12:25 pm

Hi Shelley,

Thank you for reading and letting me know you enjoy my posts. Thanks, too, for the book recommendation. Sounds good. I’ll put it on “check this out” list.

Maria

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15 Donna December 13, 2012 at 12:46 pm

Somehow I linked to this story. I really could use some friends and encouragement. You see, i”m 65 and a year ago I was almost 200 pounds and not feeling well at all. I’ve since began eating basically a vegan diet, lost over 70 pounds, and of course do feel much better. Ok, yah for me…. but I’m married to a meatatarian! who thinks the Atkins diet is the only way to go. It is sort of a take off on the old poem of Jack Sprat could eat no fat and his wife could eat no lean! Well my story is Donna could eat no fat and her hubby wouldn’t eat any lean!

I need vegan friends, and people to help and encourage me. Example: tomorrow evening our family is getting together at a restauraunt that has nothing on the menu for me to eat. This is the third time they have scheduled get togethers without any consideration to the way I eat. Two of the men will end up ordering 24 oz. steaks rare…. very rare! I love my family, but I’m totally stressed out about this dinner. I get sick on fats and dairy. I finally told my hubby that I would eat my usual food early evening, then just get a salad at the restauraunt. Part of me is angry, and the other part of me just feels guilty for feeling angry and to just get over it and move on.

I need that strength and courage, but not to keep eating right, but to keep my attitude positive and not resentful. The family is proud of me for the weight lose, but what they don’t realize is that food was killing me and everytime I give in (like this past Thankgiving when I ate cheese) I get sick again and it take several days to get that feeling out of my body.

Can this group help me? I just need someone to hear me out and give suggestions. Thanks

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16 moonwatcher December 13, 2012 at 2:29 pm

Hi Donna,

Thank you for reading my blog. I am sorry for the difficulties you are having with your husband and family. You are not alone in these challenges. Fortunately, there are great resources on the internet where you can recieve help, encouragement and suggestions for how to cope. The one I’ve found most helpful is the McDougall discussion board. Here is that link: If for some reason you have trouble with the link, just google Dr. John McDougall and when you get to his site, click on Discussion Board. It’s free. You can just read and find conversations about the very same thing you are struggling with, or you can log in and become a member (also free) and post your situation for others to read. I guarantee you there will be support, sympathy and good suggestions. If you are on facebook, conversations on Fat Free Vegan Facebook page may also be helpful. Here is that link

It sounds like you are very committed. It’s great to know you are out there. Hope these suggestions help, and that reading along on the blog will help, too.

Happy and Healthy Holidays to you!

Maria

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17 Momma G December 13, 2012 at 9:10 pm

Just a note to Donna about eating out. My husband and I are often taken out to dinner by clients and associates. I have learned to just ask and read the small print on the menus. For example, one night the only place in town open was a 24-hour Denny’s. I noticed the small print on the “burger” page said that a veggie pattie could be substituted for any burger. So, I ordered the “Mushroom Swiss Burger” without the “swiss” or the “burger” and with the veggie patty. That, with some baked sweet potatoe fries, and I was good. Also, I you just ask for a baked potatoe, for example, a side salad, and some steamed veggies, it’s amazing how much waitstaff will want to accommodate you, oftentimes volunteering choices that you had no idea that were available. I’ve been doing the McDougall plan for almost 2 months, and am learning as I go. Hope this helps some. And, of course I can’t leave out my thanks to Maria for her introspection! Have a great weekend all!!

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18 moonwatcher December 13, 2012 at 10:12 pm

Thanks, Momma G! Leave it to a McDougaller to come up with great helpful suggestions for Donna, right here, right now! You are awesome.

Maria

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19 Kim December 14, 2012 at 8:08 am

As ALWAYS I simply delight in your writing! For DONNA, go to the McDougall boards, you’ll find support. Email me whenever you want! Kphogan3@surewest.net I lost 105 pounds by flowing Weight Watchers and then my already bad thyroid flew off the charts and while following WW I GSI ed 60 pounds in 6 months, devastating to the way my body felt. I have a Neighbor, we call Angel Angie, she’s been vegan for years and it shows! I went from vegetarian to Vegan fairly faithfully about 3 months ago a d am down about 35 pounds. People regardless of our relationships sometimes feel “threatened” by the diet/living choices we make feeling like we are taking something from them. In reality we are doing the opposite! As a mother, daughter, wife etc. what they don’t realise typically is that we are as to do more, feel better and live longer with the lifestyle we’ve chosen. When people question my way of eating, although none of their business, I say “I lost my father to a massive heart attack when he was 53 and last year my 30 year old nephew, with no fore warnings, died of a massive heart attack, YES 30!” I too want to live! And that is what it is. Is the quality of your life worth a diet change to you? Eventually your husband will see what you’ve done and at the least appreciate it. Hang in there and keep reading this blog, all inspiring and real.

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20 moonwatcher December 14, 2012 at 8:57 am

Hi Kim!

Thanks for your continued appreciation and vote of confidence for my blog, and also for generously stepping up to the plate right here right now to help support Donna details from your own life. You are a sweetheart! I especially appreciate your articulation of how people feel something may be taken away from them when someone closechanges to this way of eating, when the opposite of that is actually true. Instead, we DO, then, feel better, live longer, and can be more present in our lives with them, which ultimately improves and enriches those relationships. Here’s to the long loving haul.

Maria

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21 Michelle December 16, 2012 at 10:27 pm

Hi Maria:

Catching up with your posts – I really have to read and re-read like one a week. This is because there is so much going on in each one and so many things for me to ponder, as relates to my journey too. In my first read though this one — the thing that stuck out for me was the ‘fighter” term.

I similarly have struggled with this term! I can’t say that I have a terrible feeling for it when it comes to mind: as in the phrase the “Fighting Irish” the name of the university of Notre Dames team. Since I am of Irish heritage – I have to love the wee leprechaun with his “dukes up”, but me a fighter no!

Then there is the “survivor” tag that gets tossed at me after the round I had with breast cancer – I really don’t care for this one either!! I recognize more than anything that even though I have health issues – I am not deluding myself they exist or can be tamed by medications. I have often been told this or that drug is the first line of defense for what ails me – “war what is it good for”.

I don’t want to fight or survive my way through life I want to choose to thrive each day to the best of my ability. Instead of fighter or survivor, would I call myself a thriver then? Nope – that doesn’t sound right either. I kind of like the idea that might be self described as tenacious.

From Merriam Webster
“tenacious |təˈnā sh əs| adjective:
- not readily letting go of, giving up, or separated from an object that one holds, a position, or a principle : a tenacious grip | he was the most tenacious politician in South Korea.
- not easily dispelled or discouraged; persisting in existence or in a course of action : a tenacious local legend | you’re tenacious and you get at the truth.”

When I have an image of you floating through my mind – like the picture of you in your warming vest at the destination of your amazing hike – I think this is the gift to a person that will not be dispelled or discouraged and who persists in existence ( I love that phrase – yum) – and does so slowly, deliberately, warmly, well and lovingly.

I think of us as not fighting, or surviving but living with a tenacious bent.

Thank you for your gift of beautiful words and the very thoughtful telling of your life :)

Much love and respect _/!\_ Namaste – Michelle :)

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22 moonwatcher December 17, 2012 at 7:45 am

Hi again Michelle!

Thank you for your wonderful observations on living well, and your kind words about my writing and my life. I have been called “tenacious “and “persistent” more than a few times!! They are good words to go by when it comes to being committed to healing, in all its dimensions. Thanks for reminding me of them. You made me smile.

Maria

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23 Cherie December 18, 2012 at 4:17 pm

I love the way you think!

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24 moonwatcher December 18, 2012 at 6:34 pm

Thanks, Cherie!!

Maria

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25 Maggie December 21, 2012 at 8:12 pm

I just happened upon this blog while looking for vegan recipes. I’m only two weeks into my own “slow motion miracle”, using a plant based diet. This is exactly the kind of inspiration I have been hoping to find. Thank you for sharing your life, your struggles, and your insight.

Love and Blessings,
Maggie

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26 moonwatcher December 21, 2012 at 11:12 pm

You’re welcome, Maggie. Thank you for your lovely comment. So glad you found my blog, and may your own slow motion miracle continue.

love and blessings back to you,

Maria

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27 Lyn Grey December 21, 2012 at 9:38 pm

I have huge food allergies and cerebral palsy, too. Thanks for being real. I really needed to read this.

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28 moonwatcher December 21, 2012 at 11:13 pm

Hi Lyn,

Welcome, and thank you for your wonderful comment. I appreciate knowing we share some of the same challenges.

Maria

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