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"The Turtle Journal" July 31, 2002 "Adjustment & Hope"
"When you’re putting yourself into shoes you haven’t
worn, & For months now, people have been sending us the following
observation about turtles, " You'll notice that a turtle only makes progresswhen it sticks out its neck." I guess this goes along with some of the new attitude I have for healing!
Our Poem This Week was passed on to me by our new friend and a fellow singer in Resounding Joy, Joanna. When I first met Joanna, I was impressed with her ability to combine her vast knowledge of art and literature (including helping us pronounce Old English correctly) with poise and humility seldom demonstrated so beautifully. The Turtle by William Carlos Williams Not because of his eyes, but because he is beaked, birdlike, to do an injury, has the turtle attracted you. He is your only pet. When we are together you talk of nothing else ascribing all sorts of murderous motives to his least action. You ask me to write a poem, should I have poems to write, about a turtle. The turtle lives in the mud you can tell it by his eyes which are clear, When he shall escape his present confinement He will stride about the world destroying all with his sharp beak. Whatever opposes him in the streets of the city shall go down. Cars will be overturned. And upon his back shall ride, to his conquests, my Lord, you! You shall be master! In the beginning there was a great tortoise who supported the world. Upon him all ultimately rests. Without him nothing will stand. He is all wise and can outrun the hare. In the night his eyes carry him to unknown places. He is your friend.
Giving When It Counts Many years ago, when I worked as a volunteer at a hospital, I got to know a little girl named Liz, who suffered from a rare and serious disease. Her only chance of recovery appeared to be a blood transfusion from her 5-year old brother, who had miraculously survived the same disease and had developed the antibodies, needed to combat the illness. The doctor explained the situation to her little brother, and asked the little boy if he would be willing to give his blood to his sister. I saw him hesitate for only a moment before taking a deep breath and saying, "Yes, I'll do it, if it will save her." As the transfusion progressed, he lay in bed next to his sister and smiled, as we all did, seeing the color returning to her cheeks. Then his face grew pale and his smile faded. He looked up at the doctor and asked with a trembling voice, "Will I start to die right away?" Being young, the little boy had misunderstood the doctor; he thought he was going to have to give his sister all of his blood in order to save her. You see, after all, understanding and attitude, is everything.
Casting In, Part 2 I remember talking to a mentor-teacher-friend of mine years back. Somehow the idea of "genius" came up. Ed maintained that many people have brilliant ideas and moments…the geniuses are only distinguished by their ability to persist, to struggle, to manifest their notions seeing the work through. I looked at him and insisted that there was more to it than the 10% inspiration, 90% perspiration notion of brilliance (Mark Twain?). But there’s something to what he said that goes for daily living and us all.To go into an experience, like sharing the experience of ALS with Bob, takes pushing myself behind the me I know…fighting it…"it" being me and my human patterns and limits… my fear, my anguish… not really them, but it’s being with those parts of myself that I’ve seldom allowed myself to be with…and that are hard to tolerate, unbearable at times. My supervisor, Fred Meisel, once said that the more of what seems unbearable that we can tolerate, the more truly human we become. I’m learning. I’m trying to let the door of my heart be more open to Bob, this experience, and especially to the many friends that help us…not once or twice…but again and again and again those who "show-up", show us that hey are here for us. How do they do it? Is it their own recognition and compassion of needing each other through really tough times? I’m learning from their grace and stamina and the depth of their connection and dedication to us. I don’t have this in me the way they do…but it is growing because it has to.So you, my friends, dear, devoted and constant, are my "geniuses"…of relationship, of friendship. It takes a mighty and courageous heart to join us in this illness and the challenges it brings us. You venture with us to a place where few choose to meet and stay. But you have. Phil Simmons called his community a village. That he couldn’t have done it with one less person. Neither can we. I really feel you are an army of Life Force that sees us through this uncharted and often fighting journey. Our hearts go out to you and thank you.
He beat those odds. Simmons lived nearly 10 more years, winning time to write a highly acclaimed book, "Learning to Fall, the Blessings of an Imperfect Life"; to create a community arts group, the Yeoman's Fund for the Arts; to write and speak all over the place; and to master the art of saying goodbye with grace and humor and a twinkle in his eye. On May 26, his alma mater, Amherst College, awarded him an honorary Doctorate of Letters, commending him for "confronting the very palpable evidence of his own mortality." By that time, disease had weakened his ability to speak – but not to think -- and his own remarks were read by his wife, artist Kathryn Field, his brother, Paul, and an old friend, Peggy Johnson."Learning to Fall" had its origins in a series of talks Simmons gave at the North Shore Unitarian Church of Deerfield, IL, following the ALS diagnosis. Initially unable to find a publisher, he chose to offer the book on the Internet. It was such a success that it caught the eye of international publisher Bantam Books, which brought out a new hard cover version of the book earlier this year.Rather than rest on his laurels, he was energized by that success, and continued writing. There are more essays and even a complete novel, "Rattlesnake Ridge" in his computer. As yet unpublished, the novel already has won praise from Rebecca Pepper Sinkler, former editor of the New York Times Book Review, as "an exciting debut novel by a rare man with a natural narrative gift, and a story to tell. Simmons' sly vision of small town New England life can be at turns hilarious and terrifying." Simmons and his family moved to New Hampshire when his disease was in its early stages. They had built a vacation home next door to his parents, Alan and Mary Simmons, and remodeled it to meet his needs. In illness, Simmons learned to ask for, and accept, help. Out of that real need came an organization of more than 30 local men and women, known as FOPAK, Friends of Phil and Kathryn. For nearly three years, they helped ease the family's burdens by cooking, cleaning, ferrying kids around, and helping Simmons up in the morning and to bed at night. As Phil has said, "It takes a village to care for me."
After that, Gin and I went to the beach again in Westport, Mass. –it’s near Little Compton. The weather was still good most days. One day it was too hot and humid for me to go outside, but then there was a thunder storm and the humidity cleared and it was very cool after that. Gin had a good time getting exercise and relaxing -walking, swimming and biking. We ate well with Ginny’s home cooked meals and I really enjoyed sitting on the porch, reading and looking through a telescope to see people on the beach and watching a couple of Osprey nests. There were birds everywhere. Through the telescope I could see for miles. I watched hundreds of boats go by. We were right near the Westport River, where it drains into the ocean at a very high clip. (The same river that Ginny swam in -she’s a strong swimmer -and it’s a good thing.) I could look out onto four separate outlets to the sea. We enjoyed being together and relaxing for five days. On the last two days we got together with some friends and also made plans to come back later in September, when we will have an anniversary party.
Early in July I had a few wonderful days with Simone, who came to visit from Lancaster, Pennsylvania. My cousin Chris, from Chicago, came about the same time to help me learn the NaturallySpeaking "Dragon" software which allows me to dictate orally to the computer and have it create word processing files and other documents. Chris was here for just a weekend but we were able to pack in a lot. Sunday afternoon Alyssa Scott from Racine surprised us with a visit with her father. So on a not so steamy but smoky afternoon (that day Boston experienced smoke blown down from fires in Quebec) we all went to the Esplanade in Boston for a long walk. We all converged together for an impromptu reunion. The last time we had all been together Alyssa was a flower girl for our wedding –now she is looking at colleges in the area. (You can imagine how the rest of us had a field day in giving her advice!!) I saw a new homeopath and "medical intuitive" and who works with color as well. She was very good and loving in her approach. (Next issue there will be more about this woman, Luba Levin.) She told me that I can get better, but it will take time I need to strengthen my will as this is a disease of the life force giving up in my body. I continue to get energy work from two people (and physical therapy with a great PT three times a week). One man comes to our house to do Cranial/Sacral and other energy work and I see another woman on Newbury Street in Boston. She does something called Jin Shin Jyustu. With all of this work, my energy has shifted over the last month or so and I feel more positive and hopeful. Also, with the new diet (see below), I feel less lethargic –again more energy. My muscles continue to get weaker –especially in my legs and waist area, but ironically, I am more independent now, thanks to the new power chair, some techniques and exercises from the PT, and from using a "slide board". I can use the slide board to transfer myself from one chair to another. It is especially helpful for getting into cars. No one has to lift me –it is easier for all. (I never had the advantage of this tool for my mother!)I've started a new diet about three weeks ago -not getting rid of everything all at once (but almost!) -it is very different for me: No dairy, No coffee, No wheat (I am getting into rye crisps and rice cakes -again!), No vinegar or anything fermented, No soy products!!!...No peanut butter or peanuts, No sugar, No honey or maple syrup!!! No tomatoes, potatoes, olives, eggplants or peppers (those deadly night shades)! But I can have certain fish (no shell fish), greens, rice, fruit, beets & carrots (lots of beets & carrots!) and lemons...lentils and all kinds of veggies...So far I'm doing ok with the no coffee and dairy (I thought I would miss cheeses the most, but it turns out I can have goat cheese, which I love -thank heavens for some cheese!) What I crave is something sweet. (Obviously, I’ve had to give up my daily ice-cream treat!!!) The idea is to clean out my system from toxins and try to nourish myself more effectively. Luba says that I have a lot of toxins that are preventing me from really absorbing nutrients and that I need to get this under control before other therapies will work. It makes sense to me. I do feel better –and believe it or not, I am NOT hungry all the time. I bought a juicer the other day –so bring on the organic carrots!!!!! I have more hope lately. I feel more energetic and more positive and I had a dream the other day that I struggled to walk again. The key word here I think is struggle –not that it is bad, but that it will take hard work and persistence. I think this is my extreme challenge right now. It also gives me something to do: to fight to get better. I’ve accepted a lot in life, willing to let destiny take its course often. Now I am trying to change it. I have new energy, lots of help -this part is the gift from Gin and so many of you! And I have hope and determination (I need to keep building on that). This is a huge change for me. As Gin said in her Casting In article, I too am learning from others who have shown strength in the face of adversity and who offer great inspiration. So my dear friends and family, keep sending your prayers and offering your help. It means so much to us and it does change our lives for the better! Peace and courage to all. This Turtle Journal ends with a tribute to all friends and family who have gone before us. The lines from this poem (included in Phil Simmons’ chapter 11,"Returning Home" from his book Learning to Fall ) are a reminder that we are all vulnerable and that life is a fleeting voyage.
This chalk-board
drawing is from my Waldorf Teacher Training days at Antioch
~LOVE & HELP IS ALL AROUND~
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