A Long Way from the Midwest

In Sedona

Picture a boy growing up in a small town in the Midwest; it's the 1950's. Wonderbread and Coke are staples of the diet, and so are those three glasses of milk a day. Control is important: of the temper, of one's reputation, of family news; everything is confidential, limited to a very few close friends--maybe. And the doctor is always right, indeed he is a fount of revealed wisdom, the gospel according to the American Medical Association.

Now fast forward. The boy is 50 and the woman he loves has cancer, a form of cancer for which the doctors have no real treatment. Bill's education begins in a hurry.

They tried the doctors, and they made sense, up to a point. They consulted together and Amelia chose to begin chemotherapy; she even kept working that whole next school year because the chemo was pretty benign. She was in pain, though, from the exploratory surgery and within a month they were at a yoga institute in upstate Massachusetts; they had heard the yogis could do things with pain control, and the doctors had said that even when the pain of surgery was gone, the cancer would hurt. A lot. Now see our Midwestern boy: rising at dawn to stretch, eating a breakfast of rice, tofu and "sea vegetables"--what the uninitiated call "seaweed." A full day follows: more stretching, breathing exercises, massage therapy (never mind what this would be called in the Midwest!), conversations that seriously include the words "chakra" and "aura." An art class where he learns to let his spirit, his unconscious guide the crayon. He draws what appears to be an allegory of Amelia's life and his own, but hers has an endpoint and they both lie within a larger circle of continuity; this is quite unusual, he thinks.

A friend takes them to lunch at the neighboring Kushi Institute, the center for macrobiotic living in the US. They listen and talk with people who, unlike the doctors, say there is hope and plenty of it. Bill wants to be on their team. Amelia and Bill eat, they buy books, and within a week of returning home they are eating a diet largely indistinguishable from that of a Japanese family. Bill stresses about this: is he doing it right? Is she getting all she needs? As if one wrong slice or one extra minute of steaming and he will have killed her. He buys new pots, manual mills for the vegetables, a steamer. The natural foods market becomes Bill's home away from home: sugar is gone from the diet and organic has almost completely replaced conventional. Friends are bemused at this newfound rigor, but they are patient, supportive.

And they read, voraciously, in books and on the internet. Every suggestion the doctors make is researched on-line; it's amazing what Bill finds and who he can talk to. Full professors at Harvard Med give him impromptu lectures over the phone on a new surgical technique an article talked about. People from Australia and England answer his emailed questions. Clinical trials are sought out, their directors interrogated.

Gradually Amelia and Bill learn that there are other approaches to all this than chemo. There is something called the mind/body connection that you can actualize through visualization; Bill guides Amelia through a visualization, sometimes two, every night, one to increase white blood cells, one for pain. They learn you are supposed to ask the doctors questions, which they have already been doing, and that you can fire a doc that doesn't give good answers. Bill keeps notes on his pocket PC of every office visit, much to Amelia's annoyance, but he has them to read back to the doc when the doc's file is incomplete or when they go to another clinic--drugs, dosages, history, reactions, vitals.

Nutrition and diet are important: they modify the strict macrobiotic diet because Amelia is losing weight; Bill's on-line support group--another new concept for our boy from the Plains--has said that keeping weight up is one of the single most important things any cancer sufferer needs to work on. They learn that to say "I have cancer" increases the odds of death because the body thinks that's what you want; they meticulously say "There is a cancer" instead.

And so the time passes. Amelia and Bill have changed: their diet, their exercise, their vocabulary, all different. A year goes by and Amelia is, actually, flourishing: markers in the blood indicate tumor activity has slowed; CT scans show that most of the tumor is probably just dead cells and water. They are encouraged, and their search continues. A friend, it turns out, does healing using the Bahá'í Writings and colored light--not lights you can see, mind you, but colors he projects onto cancer cells, white blood cells, individual organs, using his mind. He is obviously sincere and Amelia is hopeful; they start a collaboration that lasts three years and without doubt contributes enormously to Amelia's mood, her spiritual development, and her ability to confound the doctors' statistics: she has already lived six months longer than their best estimates, and would live eight times longer than the consensus prognosis of six months. Bill says nothing about this, though gradually he is won over: but what comes first is that it's Amelia's body, her hope, her decision. Bill's job is logistics and support, a listening ear, a constructive question; Bill makes things happen for Amelia.

Constantly they ask "What else should we be doing?" The answer has now become "You are doing the spiritual work, asking for God's help and His guidance. You are using the doctors, combining them with alternative treatments. You are working the diet and nutrition. And you are keeping your will to live strong and intact. Your bases are covered."

Then, four years on, after radiation, numerous types of chemo and a host of utterly impossiblie decisions Amelia and Bill have had to make, the tumor suddenly throws off all restraint and begins to rampage throughout Amelia's system. Outposts are established in her lungs, her liver, and the doctors say it's just a matter of time. What to do?

Friends tell them of an experimental approach being practiced by a man in Sedona. He uses light and sound to make cancer cells disintegrate, the way a glass breaks when a high note is played. They call him: is he a quack? But he sounds sincere, knowing, and he tells them he will do the energy work and that treatment will also include sitting on a river bank, sunbathing naked in the noonday sun, a whole new diet, a whole new way of bathing, enemas, herbs. Amelia and Bill consult; Amelia wants to try it; Bill makes it happen. You have to be able to tell yourself, in the long dark nights that may come, that you did everything, just everything you possibly could. This is about as far from Midwest, 1950, as you can get, Bill thinks, but let's give it a try.

And they do. Bill does everything Amelia does, partly because they think it will be healthy for both, partly to keep her company so she won't feel alone or that she is imposing on him. Things appear to work for a while. Bill learns a little reflexology, a little iridology, partly because you never know what you'll need, partly because Amelia wants him to. He learns to work the light machine so they can buy one and use it at home.

Amelia turns yellow: her liver has almost failed. They pack for home and leave. She shrinks visibly, a little more each day; despite treatments with the machine first her strength leaves her, then her awareness. She passes a month later.

Did all this work? Yes, unequivocally yes: medically, spiritually, and emotionally, because they didn't feel helpless, powerless before the assault of the disease. Even the very work of exploring all these things brought them closer to each other. Their minds were opened more than they had ever imagined; new worlds were uncovered, new people encountered and friends made. Need drove them to it, and the soft footfalls of Death, shadowing them wherever they went. Love carried them on, and hope. They made the journey of the thousand steps.

And Bill has come a long way from the Midwest of Wonderbread, Coca-Cola and three glasses of milk a day.

Comments

[Husayn]

I'm really glad you wrote this. I remember a couple months ago you were kind of questioning whether all these things worked. I also remember during this whole time I developed a kind of sympathetic relationship with my Mom. I could see and feel the tumors, what they were doing and how they were growing or dying inside her body. At the beginning of last summer I felt like she was going to get better. I think I was detached enough to sense that, but attached enough to make myself think it was physically. I remember feeling it so strongly that last month, and getting so mad at the hospice nurse that kept telling us otherwise. But that last month, I started to realize that she needed to do a couple more things to be completely healthy. Only afterwards could I face the fact that she was getting better spiritually and emotionally, not physically like I so much wanted to believe. Thinking back on the last 4 years with her, I don't think I ever remember a time when she laughed and smiled more. Even the last couple weeks, I remember her laughing, telling people she was happy even as she was saying goodbye, and freely expressing her emotions with people. So I have to agree with you, everything you two did together worked. Unbelievably well. I think in almost every sense of the word except physically, by the time Mom passed she was completely healed. And you both made that happen. When I think of a strong marriage, that's the model I think of, that's the kind of effort I see each person putting forth, and those are the fruits I expect to see.
When you talk about writing a book, I think to myself, yes, please. Seeing what you two created set a new standard for me.

[Rick Schaut]

Bill,

I don't know if you remember me, but about 15 years ago I was a member of the Green Lake Conference planning committee (after the "Come Pick the Flowers" edition).

Last night, my wife and I read your blog together, and found it very touching and uplifting at the same time. Think you for sharing in this way.

When I was a freshman in college, my Grandfather died of pancreatic cancer. I only wish he'd had the spiritual tools that Amelia had when it came time to face this. Gramps faught it every step of the way, and it wasn't at all an enjoyable experience for the family. Perhaps you can share more of how Amelia's outlook and spirituality affected the dying process?

I don't know. You still have to write from your heart, so feel free to completely disregard this request if that's not where your heart is.

[Bill]

Thank you, Rick; I sure do remember you. And I'll give thought to how to describe the things you mention more fully, because it is a good story and because if there is to be a book, those things will have to be there. Thank you for your insight.