Another Chapter to share with you

Chapter 19

This month I passed my eight-year anniversary since diagnosis. It wasn’t a celebration, but it was a milestone of sorts.  Conventional medicine had me cremated by this time – statistically speaking less than 20% of patients diagnosed with ALS live beyond five years.  I guess I’m special.

I have mixed emotions about this mark of time.  I should be happy that I am still alive – I am.  But, I can’t help but feel frustrated, afraid, sad and depressed at the same time.  I have a wonderful wife and son who love me and care for me each day – they make life worth living.  I have fantastic friends who visit me and help pass the time.  I have good caregivers who are compassionate and skilled. I still use my computer, surfing the Internet, communicating with others, enjoying social media and reading the news.  I have at least 10 books on my Kindle which I plan to slowly read. I watch a lot of television and movies.  Ten years ago when I was working 12 hours a day six days a week I would’ve given my right arm to be able to lay around in bed and watch TV, read or surf the Internet all day.  Now, I would give both arms to be able to go to work!

I am grateful; I have much when others throughout the world have much, much less. I am afraid of what this disease will bring next.  I am afraid of losing my ability to speak and my ability to stay in contact with the world and the ones I love.  I am afraid of the power going out and suffocating – death does not scare me.  It is the process of dying that I am afraid of, and then the grief, guilt and sorrow that my family will have to endure when I am gone; that is unacceptable.  Somehow, I want to protect them from that seemingly inevitable scenario.  I guess I have to keep hanging in there.

That causes worry and anxiety as well.  How long can my wife continue to work full-time, supporting the family financially, and be my primary caregiver?  Burnout seems like it is just a bad cold away.  I also worry about money – how long will my retirement savings last? What will we do when the disability payments stop?

I feel like my existence is perfectly split between the good and bad, the happy and the sad.  How can I live with such dichotomy?  Is this natural? Perhaps Abbey can offer some guidance.

I meditate on the beautiful ceramic pot once again.  I guide my mind through multiple levels of consciousness searching for the monoliths on the pristine slopes of Mauna Kea.  I find them, but Abbey is not there.  I am left to explore on my own.  I don’t feel prepared for this part of the journey. 

Standing on Sacred Ground

I recommend this series! http://standingonsacredground.org/
One of the things I miss is the direct connection with nature. The indigenous people shown in these videos, remind us all to revere and respect the spiritual connection sacred places give us...

Outside with my son and his girlfriend

For my birthday, I was able to go outside with my son, his girlfriend and my wife. I had not been outside since January. It was wonderful to feel the sun and the breeze.

Another passage from "The Artist and the Dreamer"

“Have you ever heard of Mana?” she asked in reply.

“Yes, isn’t that the ancient Polynesian belief that everything is alive?”

“I call it life-energy. Each and every thing has this power, these beautiful stones, the grass and the trees, the blue whale--the largest creature on earth to the smallest grain of sand. Each thing, whether we think of it as living and inanimate, has Mana.”

“So are you saying your paintings have Mana?”

“Of course they do. Didn’t I just say everything has Mana?” she waited a moment and then began again, “Some things have more than others when they are created and some things can gain Mana over time and experience. For example a plastic toy made in China has little Mana. There are literally billions of these little toys, manufactured on assembly lines with little thought or care, but when you buy the toy and give it to your child, its’ Mana increases. As time goes on and your child uses his imagination to play with the toy its’ Mana continues to grow. If the toy survives and your child keeps it until he is an adult, it becomes even more powerful.”

“The older an object is the more Mana it has?” I ask.

“As with most things, the answer is yes and no; some things have a great power when they are first created and this power diminishes over time. The volcano is a good example. When Kohala, Hualālai and Mauna Kea first burst forth from the ocean depths, they were great and powerful. Together they had enough Mana to create this beautiful island. The mountains’ Mana flowed through the hot lava. Now, millions of years later they are dormant and their Mana is overshadowed by their brothers Mauna Loa and Kilauea.”

“The mountains still have Mana though, don’t they?” I wonder out loud.

“Yes of course they do, and believe it or not, the Mana of Mauna Kea has been enhanced, not diminished, by the establishment of the observatories on her Summit.”

“Oh, that sounds controversial. I’m sure there are native Hawaiians who disagree with you.”

“As with most things, the answer is yes and no…” she replied with a smile.

I looked to her for further explanation.

“It's a matter of balance. The ancient Hawaiians were great students of the heavens…skilled astronomers. I believe they would understand and appreciate the research done on the mountain. But, they would also want the scientists to respect the scared nature of the place, to preserve and protect the land—not over develop."

"A difficult task," I said.

"Yes, but worth the effort." She shifted her small frame on the flat surface of the rock, straightened her dress and continued. "But, what about your original question-- How do you think my paintings help you?”

A Passage from "The Artist and the Dreamer"

 This is a passage from a book I'm trying to finish. Abby is the Artist...

" The relationship with Abbey is easier for everyone to accept. Over the last several years an amazing number of people, some good friends and some complete strangers, have stepped forward with tremendous kindness and generosity. I’m not sure what attracts such goodness and at first it was difficult to accept. I was raised to be independent and to rely on myself or immediate family. Needing assistance from others was not part of my nature. I was skeptical at first, but as the acts of kindness multiplied and my guard weakened I realized that giving and receiving have equal rewards. It seems that if I remain open and receptive, good things and good people continue to enrich my life. And by allowing others to give, I too am giving. I viewed Abbey and her paintings as part of this positive cycle."

I'm Grateful

“Gratitude can turn a meal into a feast, a house into a home, a stranger into a friend. It makes sense of our past, brings peace for today, and creates a vision for tomorrow.”

--Melody Beattie [i]

Thinking about spirituality and religion

There is only one highest reality and many teachers.

All humans and life arise from the same one source.

All countries, religions and institutions arise from that.

There are many books of wisdom from many ages.

Thinking there is only one way comes from ignorance.

Coercive conversion is violence against other peoples.

The goal of life is found within, not in institutions.

Wisdom, joy and freedom come from the inner stillness.

Love all, as we are all waves of the one ocean.

 --Swami Jnaneshvara Bharati 

From: http://swamij.com