“Hope is not a conviction that something will turn out well
but rather the certainty that something is worth doing
no matter how it turns out”
-Vaclav Havel
From the outset, I have approached ALS as a journey and healing process, rather than a battle with a fatal untreatable disease. My situation is what it is and I am very grateful for what I am still able to do. I try to approach each day as an adventure with the possibility of joyful moments.
After the initial shock of my ALS diagnosis, I began thinking about how important it was to develop new interests and ways to spend my day as my physical limitations increased. I knew I could no longer kayak, ski or take my usual hikes so I spent more time gardening and on my photography.
I began using lighter and lighter cameras, but eventually I couldn’t even hold my iPhone still enough to get good photos. After feeling sorry for myself, I decided my over 100,000 photos would just have to due and that Betty could take over as our family photographer. As time passed, I became more of a gardening consultant which I learned to accept, but with much sadness.
I realized that I would be slowing way down and spending a lot of time resting; therefore, I needed to find interests that required limited physical ability. So I began exploring things I might enjoy and be able to do. I needed things that that had purpose and meaning and that would take my mind off of the ALS struggles that lay ahead.
While in Boulder, Colorado, following an appointment with my Tibetan traditional medicine doctor, I visited a favorite bookstore to look for books to learn about Tibetan traditional medicine. However, the two books that attracted my greatest attention were the Dali Lama’s “The Art of Happiness: A Handbook for Living” and a book on mindfulness by Thich Nhat Hanh. I sure needed tips on being happy and I was curious about how mindfulness might help.
As my family, friends and former colleagues will attest, I am task-oriented and I can become intense about certain things, including inequality, injustice, extremism, environmental destruction and people not taking responsibility.
Although I get along well with others, sometimes my intensity and being too much of a protectionist diminishes my effectiveness. My frustration and anger regarding lack of effort by others sometimes gets in the way of effective communications so the chapter on dealing with anger in the “ Art of Happiness” was of particular interest.
Soon after reading these books, I came across this Lao Tzu wisdom:
”Would you like to save the world from the degradation and destruction it seems destined for? Then step away from shallow mass movements and quietly go to work on your own self-awareness. If you want to awaken all of humanity, then awaken all of yourself. If you want to eliminate the suffering in the world, then eliminate all that is dark and negative in yourself. Truly, the greatest gift you have to give is that of your own self-transformation."
Tzu’s advice resinated with me and helped me realize that I first needed to get my own stuff together if I was to become more effective with others as well as have a more joyful life. Therefore, developing greater self awareness and personal growth became an important part of my personal improvement program. So I cut back on keeping up on what was going on in the daily news and began spending more time finding things that inspired me and expanded my consciousness.
At the time, I had been working with my long time mind and body therapist, Katharine, on movement, body work, breathing and energy flow. Since I am sometimes on an emotional roller coaster because of plateaus followed by loss of strength, mobility and balance, Katharine has helped me process these changes as my disease has progressed. This has increase my spaciousness and serenity.
During my initial sessions with Katharine, I learned about following my body’s natural intelligence and rhythms and focusing more in my heart and spirit and less in my mind. Later, Katharine and I began working on mind body connections, mindfulness and meditation.
KATHASometimes we work on being less reactive, expanding my perspective or communication skills. I am learning that I may not always have time, although I do have moments to take advantage of. The focus is on what feels right to me rather than on what I think I am suppose to be or do. I have become less intense, calmer and more joyful.
Reading Jill Bolte Taylor’s book, A Stoke of Inspiration: A Brain Scientist’s Personal Journey, helped me understand some of the scientific base for my work with Katharine. I learned about the different functions of your brain’s left and right hemispheres, how they are connected and that because of neuroplasticity, we have the ability to put more emphasize on either our left or right hemisphere.
left brain hemisphere: always wants to be right, thinks methodically, uses language, organizes and analyzes information regarding the past and the future. It reminds me to turn off the stove, return a phone call and tells me that I am separate from the energy around me.
right brain hemisphere: is totally different. It is mellow and wants to be happy. It involves perception, intuition, peacefulness, joyfulness and the right here and now. It uses pictures and learns kinesthetically how the present moment looks, feels, smells and sounds like. It tells me that I am an energy being connected to all the energy surrounding me and that we are connected as one human family on planet earth.
Because of my temperament, my university studies, my demanding work and what our fast paced culture demands, I have spent most of my life in my left brain hemisphere. Therefore, I need to utilize my right brain more effectively if I am to achieve more calm and joyfulness in my life and become a more whole person .
When I mention this to my friends and former city planner colleges they must wonder how in the world I am going to transition from assisting cities adopt 20 and 40 year future master plans to spending much of my day in the present moment.
An example of a right brain shift: Instead of allowing my to do list to dominate my day, I am taking more time to “smell the roses” For example, this morning after finishing my mat exercises, I took time to sit in the morning sun, feel the cool breeze, watch tree leaves dance in the wind, listen to the birds sing and just enjoy the calm.
While enjoying this still time, my left brain kept reminding me about all the things I needed to do, but I told “Brilliant” (the name I use when speaking to my left brain} to chill out because I was enjoying my time with “Happy” (what I call my right brain) and that I would get to to my to do list in good time. My former to do list has become more of a wellness routine. As the saying goes, “Nature does not hurry, yet everything is accomplished.”
In order to carry out both routine and complex tasks your left brain needs to function well, although Dr. Taylor explains how it is possible to use both brain hemispheres effectively in order to live a more whole life.
Although Dr. Taylor was not aware of Feldenkrais Method movement therapy, that I have practiced for years, she utilized the same neuromuscular principles during her 8 year rehabilitation process to rebuild her left brain that had been completely destroyed by her stroke. The progression of ALS is entirely different than dealing with a stroke, although in a later chapter I explain how much I have benefited from Feldenkrais movement therapy because of our brain’s plasticity.
By telling my busy mind to take a break, I am learning to quiet my left brain and shift to my right hemisphere and the present moment. The more time I spend on the right side the more joyful and peaceful I will become and perhaps the whole planet will be more peaceful.
I am trying to strive for a better balance between my two hemispheres. I now know that if I want to be right I should focus on my left brain and if I want to be happy I should focus on my right brain. By strengthening my right brain to better balance the two hemispheres, I will be better able to reach my goal of bringing positive energy to the space that I occupy.
You can find out more about the two brain hemispheres and how Dr Taylor used this knowledge for her stroke recovery in her TEDTalk. There are also a number of her interviews on YouTube.
My first meditation efforts felt unsuccessful because I was making too much out of how to do it and what was suppose to happen. I was comparing myself to other people’s experience and I couldn’t concentrate due to my busy mind. I kept trying, although I thought that maybe meditation was just not for me.
However, while at the Crestone Mountain Zen Center (CMZC) in Colorado, Deborah taught me that meditation was just a quiet sit and that I should have no expectation because each person’s experience is different. There is no right or wrong way to meditate, unless you are engaged in serious formal practice. This insight along with the stillness and natural beauty of CMZC brought me a deep inner peace.
Now when I meditate, I sit in a comfortable chair, slow way down, follow my natural breath and feel the calm. Once I am fully calm and relaxed, I check in to feel what is going on with my body, mind, emotions, heart and spirit. Sometimes, I work on external instead of internal awareness. In this case my eyes are often open as I focus my attention on my surroundings and tune in with my perceptive right brain.
When I have only a moment. I am learning to pause, sit quietly, slow way down, follow my breath and feel the calm. My goal is to routinely do this throughout the day. Maybe there is no time, but there are moments.
I feel more calm and grounded after meditating. I especially like meditating outdoors when it is still and the morning sun is rising. I also have a written morning mediation (APPENDIX C) that I often use. My days go better when I take the time to meditate even if just for brief moments. When I maintain a calm mind and emotional composure inner peace and equanimity are possible.
I find trees and rivers helpful metaphors. Trees because they are able to withstand heavy winds since they are firmly grounded and are resilient. Rivers because they ebb and flow depending on how much water is running. I have come to realize that nature is helping lead me to greater awareness and calm.
There has been a magical pattern of synchronicity throughout my ALS journey beginning with our weekend at Barbara’s ranch, finding Amchi Leksang which lead me to the two books mentioned above at the Boulder Book store, to my years of working with Katharine, finding the Stroke of Insight book at just the right time, discovering Loving Thunder therapeutic horseback riding, Betty’s personal conversation in India with His Holiness the Dali Lama about my Tibetan traditional medicine and I could go on and on.
I came to realize that these profound instances were guiding me toward what my life needed at that time: More calm, less stress, more heart, less head. more intuition, less intellect, more awareness, listening and use of my senses. These unexpected deeply meaningful experiences continue to occur.
My family provided me a strong religious foundation, although now I am spiritual, but not religious. I believe that our spirit or soul is an important human need especially for those of us struggling from ALS or other serious illnesses. Our spirit gives us personal meaning and strength and a will to live.
I still follow spiritual traditions that my mother taught me as a young boy, but I have added others that resonate with me. An example, is sending out prayers to everyone in the world that I learned about when Betty and I visited Bhutan. Another example is thanking all the people that grow, pick and prepare our food in addition to thanking our creator. We learned about this tradition when visiting Japan. And I have learned from Indian traditional wisdom to also give thanks to the plants and animals that gave their lives in order for me to eat.
My spirit helps me feel part of the universe and that I am interconnected and interdependent with earth’s web of life. This has made me more humble, more grateful for life, and compassionate toward all beings. It has strengthened my desire to focus on the greater good as well. Michael Gray in his article, “Listening to our Hearts - Out of Loss, New Life”, explores this experience.
There is no cure for ALS, although we can still heal. Rachel Naomi Remen MD and UCSF medical school professor has stated, “Even when disease cannot be cured, there is often a way to use this difficult experience to know more intimately the value and purpose of your life”.
Although ALS has been heartbreaking for me, it has also provided me an opportunity to reflect on what is most important in my life and to work toward it.
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