Living With Dying

RED BEANS AND RICELY


Note: You will find a list of books that inspire at the end of this article.

I was living in Northern California U.S.A. in the Central Valley when I was diagnosed with a fatal condition, idiopathic pulmonary fibrosis (IPF). I was given two years to live. That was almost eleven years ago ... Things have been up and down since then, mostly up. Thanks to the support of my hero son (behind me every day and every step of the way), fabulous and talented physicians, modern medicine, health insurance, and love of good friends, I'm still here. Our success in buying more time continues.

I moved to the San Francisco Bay area about four years after diagnosis to be near my son and the two great medical research institutions that are in this area, University of California,San Francisco (UCSF) Medical Center and Stanford University Medical Center (Palo Alto). These are both hospitals that have a high success rate with lung transplant. (99% survive the first year.) I go to UCSF and so far have beat the bullet on the lung transplant because I do well on prednisone and lately am transitioning to Cellcept, a powerful immunosuppressant that is actually also used for transplant patients. It helped as well to discover my problem with wheat-and-gluten. After transitioning to a gluten-free diet, I had a sixteen percent increase in exchange of gases (oxygen and carbon dioxide), a critical measure of lung function. I was taken off the transplant list. Though a transplant is still probable, we have bought time and quality of life.

Needless to say, there are moments of fear, pain and frustration. Witness my poem Victory Is Mine - "puce and putrid acid" did literally fill my lungs twice, almost drowning me and causing more damage - this is not unusual for folks with lung disease. That was corrected some weeks ago with a surgery, the Nissen Fundiplication, which tightens the stomach sphincter so that acid can't come up into the lungs and esophagus.

Over the years, between one thing and another, we've been able to keep moments of pain and frustration to a minimum. The biggest helps to me in addition to my son and my doctors have been the wisdom of Buddhism and Eckhart Tolle, both providing pragmatic guidelines for living in the moment (not borrowing a worry), being grateful in the moment, and not generating further pain through poor habits of self-talk. From both of these I learned that much suffering is self-inflicted, given the way we view things and talk to ourselves about the events and conditions of our lives. These wisdom teachings showed me how to stop the constant flow of unconscious mind-chatter and enter the silence ... One of the things I love about creating art is going into that same sacred space. These have been life-savers as in quality of life savers.

My other much beloved quality-of-life saver is my Group. Of course, it's not mine. It's ours. This is a Group that is sponsored by a Buddhist center near home. Its members all of have life-threatening illnesses, yet lead productive and joy-filled lives while buying time. We are led by the dearest, kindest human being, a Buddhist chaplain, whose kindness is so deep and consistent I tear to think about it and him. The Group is composed of people from all different religious traditions. Buddhism doesn't seek to proselytize and does respect all religions so this is possible. The diversity just serves to enrich the experience. Each of us knows inherently that our illness can be a spiritual path if we choose to use it that way ... and we do. That's one of the things I love about us.

I could have joined a support group for people with IPF or other interstitial lung diseases. I chose this Group on purpose. I didn't want to be in a group where everyone died. I didn't think I could handle that emotionally. I knew if I was in a more generic group there would be survivors. Many cancer patients survive, for example. We have indeed had members who have gone into remission and moved on with their lives. So wonderful!

I wanted a group that was spiritually based, not medically based. I believe this whole trip called "life" is a spiritual exercise not a material one. So this Group is consistent with my personal philosophy and value. The Group has turned out to be one of the great joys of my life. Each person within it is heroic, generous, compassionate, and very, very dear.

We celebrate our lives and our love with periodic potlucks. They are always vegetarian because of the Buddhist sponsorship and because many of us lean in that direction anyway. They are huge, huge fun. You might think they would be depressing, but they're not.  My son says, "You guys really know how to throw a party."  As we eat and enjoy one an other's company, we also enjoy one an other's talents. We take turns reading our poetry, playing our instruments (guitar, violin and viola, bagpipes, piano), singing and acting. One of our members, a trained Shakespearean actor, did Puck this time. It was fabulous. Just fabulous ...

We had our potluck at A's house in the redwoods not far from the former home of Ken Kesey. That natural setting is always soothing and harmonious as are the hosting talents of A. You could not hope to be in the company of a more gracious lady. I made red beans and rice this time, which is not just vegetarian but vegan and is naturally wheat-and-gluten free. Hence the title of this post. Also "Red Beans and Ricely

The photographs here were taken by L. at our potluck in A.'s redwood forest.
We have become good at living with dying. We are no different from everyone else. We're just no longer in denial.
May all sentient beings find peace.
Redbeans and Ricely,
Jamie.
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BOOKS THAT PROVOKE THOUGH AND INSPIRE NEW HEALING PERSPECTIVES

by Irvin D. Yalom, M.D.
Professor Emeritus of Psychiatry, Stanford University

Irv Yalom has written a beautiful and courageous book—a book that comforts even as it explores and confronts death. Yalom helps us understand that we must all come to grips with a paradox: The physicality of death destroys us; the idea of death saves us.” George Valliant, Professor of Psychiatry at Harvard Medical School.

His Holiness the 14th Dalai Lama, Tenzin Gyatso
One of the world's greatest spiritual leaders teams up with a psychiatrist to share, for the first time, how he achieved his hard-won serenity and how readers can attain the same inner peace. Good Reads.
Viktor E. Frankl
It gives a vivid account of what a prisoner in a Nazi concentration camp experienced and what mental state he was in during each phase of their imprisonment. He also goes into detail on the reasons why the survivors outlasted so much mental, emotional, and physical abuse, and why others did not. Lifestyle.
4.) THUNDERING SILENCE: SUTRA ON KNOWING THE BETTER WAY TO CATCH A SNAKE 
Thich Nhat Hanh
In Thundering Silence, Thich Nhat Hanh presents the early teachings of the Buddha on how to see reality clearly without becoming caught by notions and ideologies, however noble. These teachings illustrate how playfulness, openness, and non-attachment from views are essential elements for liberating us from our mental contsructions so that we can enjoy our lives more fully. Nhat Hanh demonstrates the practical applications of these teachings in everyday life. Parallx Press.
Brother Lawrence
In this 300 year old classic, we learn how one man developed a personal relationship with God. Takes some getting used to because of the old writing style.
Eckhart Tolle
“Many people are so imprisoned in their minds that the beauty of nature does not really exist for them.  They might say, “What a pretty flower,” but that’s just a mechanical mental labeling.  Because they are not still, not present, they don’t truly see the flower, don’t feel its essence, its holiness — just as they don’t know themselves, don’t feel their own essence, their own holiness.” Eckhart Tolle, The Power of Now.
Karen Armstrong
Exhaustive ... The Great Transformation masterfully synthesizes mountains of information... and attend with care to how political and economic changes effect philosophy and religion. The Boston Globe
Can the ideas of a few inspired lives 2,500 years ago be effectively applied to quell today's intolerance and warfare? Armstrong says those ideals can apply and urges that humanity abide by the ancient call to abandon selfishness and embrace compassion. Los Angeles Times
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 "As long as space remains, As long as sentient beings remain, Until then, may I too remain, and dispel the miseries of the world." Shantideva, Eighth Century Indian Buddhist scholar 

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