Sonnet One

Don wrote this in memory of his wife, Kathleen.

SONNET ONE

 

 

 

There will be an answer at day’s last light

 

Why you could not stay, you had taken flight.

 

In the quiet night, ponder events of day

 

How it came to past, why it was this way?

 

 

You brought me alive with each touch of hand

 

I dream of your glowing smile framed by warmth.

 

I only sense faded footprints on wet sand.

 

With each flow of time, was there ever birth?

 

 

 

All will reveal , I journey to the light.

 

How birds fold their wings flying ever high.

 

penguins’ waddle, dive in effortless flight.

 

Cocoon transform into the butterfly.

 

 

My heart will be whole again by God’s grace,

 

Seeing your warm smile, enveloped in embrace.

Don Ho

Don wrote this in memory of his partner, Kathleen. In his story he details his not only his own healing process, but also the spiritual journey he is embracing.                                   

AUTUMN

 

The first Sunday of Fall started as a cool overcast, foggy morning. I was planning to hike Montaro Mountain in the morning to scatter the Fall portion of Kathleen’s ashes in the mountain overlooking the town of Pacifica and the calm Pacific Ocean. It was dark as I left Union City, crossing the San Mateo Bridge. The fog blanketed parts of Skyline Drive and the descent into Pacifica itself.

 

I arrived at San Pedro County Park before 8AM. First light attempted to cut through the fog that blurred the sign on the gate. Park closed. I parked the car next door at the church. Put on my hiking boots, loaded my backpack along with camera and head next door to the park and the trailhead for Montaro Mountain. It was very damp. The eucalyptus limbs and leaves which canopied the trail, wept with morning dew as I too wept. It was as if the entire hillside was mourning the beginning of this day. At each switchback, I turned, looking over my shoulder to see if she was following. Normally, she would be ahead of me, leading the way at a vigorous pace. Today, I set my own quickened pace. I sensed she was not resting on my shoulder. There was no weight. But, her spirit hovered over me. Her presence reassured  and pleased me. The coast was always sunny and clear this time of year. The Eye of God always shone brightly on these Fall days, burning back the mist from its usual summer doldrums.

 

The trail was soft underfoot. Tears mixed with dust. I left the eucalyptus grove, climbing upward towards the manzanita, hollyberry, and ever present poison oak. Stay on the trail, dear. The brilliance of God’s eye warmed me. I stripped down to my shirt and stopped for water. About 10AM, I reached the boundary of San Pedro County Park and McNee Ranch State Park. There was a lookout about twenty yards towards the coast. I walked out to the edge, removed my pack and emptied the contents onto the hardpack soil, amongst the stunted manzanita.

 

The ziplock bag contained: Kathleen’s ashes,  ground coffee and tea leaves, dried diced lime and two ounces of rum. All in their separate containers. She had taught me how to drink coffee and green tea. She also loved lime and rum after a long days hike. Oh yes, I also had collected my own hair in a vial. That too laid on the ground. I collected my thoughts as I sipped on my water and energy bar.

 

First, I poured her ashes in a small circle. Then my hair went into the middle of that circle. We would always be together this way, encircling one another. The coffee and tea were laid to one side. The lime and rum were left on the other. (I drank a portion of the rum as a toast for both of us.) I had this overwhelming feeling that I needed to share this, since I don’t drink,  she would have wanted me to take communion with her. As I had done at the beginning of Summer, I asked for her forgiveness and wellbeing. Letting her know that I was getting along in the world, not to worry. We talked about the fog clearing away from the hillside. Down below you could see the surf appearing. It was a beautiful day.

 

The only other hiker I met on the way back was a mother and child. They both gave way on the trail. I thanked them both. As I passed the woman, she rejoiced, “ It’s heavenly up here!”. I replied, “And that is why we are all here this morning. Amen”

Doni James

Doni wrote this story to share in one of her classes. It is beautiful in its own right, as it details the emotions that many feel when they are diagnosed with ALS.

The Diagnosis

 

            Following the final Memoirs Writing class of the summer session on July 27, most members went to lunch together. Finding myself sitting next to Catherine and knowing a little about her background in medicine, I asked if she could recommend a good neurologist. She asked what I was experiencing and I mentioned that over the preceding few months I’d noticed my right hand seemed to be weak and that I suspected a pinched nerve. A problem with my left arm several years ago left me unable to lift the arm and an orthopedist diagnosed a mild impingement that was irritating the tendons and causing them to swell. Physical therapy only exacerbated the irritation, but time and gentle yoga restored full use.

 

This sensation felt different, however. There was a tingling or “buzzing” sensation, like butterfly wings fluttering in my arm. I was also having muscle cramps in my toes, feet, calves, thighs and even my diaphragm if I sneezed or got into particular yoga positions. My self-diagnosis was nerve impingement in my right shoulder causing the weakness and a mineral deficiency causing the cramps. In early May my daughter, Wendy, and I had spent a week at Rancho la Puerta in Tecate, Mexico. There we enjoyed morning hikes and yoga classes, but leg cramps caused me difficulty and my right arm was weak and collapsed under my weight in basic positions like “Downward Facing Dog”. Wendy had brought mineral tablets and shared them with me. They helped, but didn’t solve the cramping, so I thought perhaps I needed potassium or some other mineral not included in her supplement.

 

A few days after returning from the spa, Wendy, her husband, Deak, my husband, Charlie and I rented and loaded a U-Haul truck with my parents’ possessions and moved them from Sutter Creek, CA to a duplex owned by Turner Retirement Community in Turner, OR, seven miles south of Salem. Deak and Charlie drove the U-Haul, Wendy drove her packed-to-the-windows-and-roof SUV, while I drove my mother and stepfather in their Chevrolet Lumina. After unloading, we left the U-Haul in Salem, the Lumina with my folks, and the four of us returned in the SUV.

 

The last weekend in May and first weekend in June, Wendy and I held garage sales to dispose of items Mom had left behind and were able to send her $800 in proceeds. This was when I discovered I was unable to lift a hammer to drive a nail in the wall to hang a picture. My right arm felt like a dead weight when I tried to lift the hammer.

 

I drove to Oregon to spend a few days visiting with Mom near the end of July, where I discovered I was no longer able to turn the key in the ignition of the Lumina – the key I’d turned easily two months before. As Mom reached over to turn the key for me, she asked what was going on. I described my lack of ability to use my right hand. I could no longer put a metal clip on papers or hang a skirt or pair of pants using the clips on hangers designed to hold them and had difficulty opening a jar or using a spray bottle. Mom said, “That sounds like what Donellen had. Let me call her. Maybe she can come over and tell you about it.”

 

She called and a few minutes later Donellen appeared at the front door. Mom thought she was in her mid-seventies but she said she was 81. She looked terrific and in excellent health. Her symptoms did sound similar but she had not received treatment for almost 2 years. As she felt her energy fade and became exhausted and weak, her doctor diagnosed it as depression and prescribed antidepressants. She said that over the months she lost interest in normal activities, no longer walked, her face became “frozen” and she had no energy. Her daughters were convinced that she was dying. One day she saw a local neurologist on TV and immediately made an appointment to see him. He diagnosed her with Parkinson’s Disease, prescribed medication, and she immediately began to improve and is walking and active again.

 

Parkinson’s Disease? My great-grandfather had Parkinson’s and died choking on a piece of meat. I’ve known two other people who, after years of struggle, ultimately died of this disease. The possibility of a diagnosis of Parkinson’s at just 64-years of age sounded like the end of the world.

 

Going back to our lunch:  Catherine gave me the name of a neurologist she said was excellent but expensive – Dr. Susan Hansen. Covering all the possibilities, she also provided the names of an orthopedist and a physical therapist. Home from lunch, I called to make an appointment and was delighted to find she had an opening on Tuesday, July 31, just 4 days away.

 

The doctor was thorough. A full medical history, a physical examination that included a check of reflexes including running something along the bottom of my feet, orders for a full blood work-up and an MRI — and the assurance that I did not have Parkinson’s Disease. What a relief! I went straight from her office to the lab where they drained me of 8 vials of blood; the MRI was scheduled for the following Monday. Dr. Hansen mentioned that some of the blood tests were unusual and results would not be back for two to three weeks, so my next appointment was scheduled for Thursday, August 23.

 

Arriving a few minutes early for my 10:30 AM appointment, I checked in with the receptionist, took a seat in the waiting room right in front of where she sat at her desk, and began to read about the latest happenings in the Palo Alto Daily. I had called trying to reschedule. My every-four-month teeth cleaning appointment is at 2 PM in Plymouth, a 2 ½-hour drive, and I knew time was tight. Since I was just the second appointment of the morning, the receptionist had felt the doctor would be able to see me on time. I had also tried to move my dental appointment back. Kathy, my dentist’s receptionist, said she would check with the person scheduled for 2:40 to see we could switch but hadn’t called back.

 

            The minutes ticked by:  10:40, 10:50, a man arrived, signed in, and the person assisting the receptionist took him down the hall. The receptionist took a call and began discussing a vacation trip in a loud voice and in great detail. I felt my blood pressure begin to rise. Eleven o’clock arrived. Now a young man from some laboratory arrived with a birthday basket of goodies for the receptionist. After a round of “Happy Birthday to You” they were chatting away. Still I sat. When he finally sashayed out the door at 11:10 AM, I stepped back up to the window and said, “I think we need to reschedule my appointment. I told you that I have a dental appointment at 2 o’clock and it is a 2 ½-hour drive from here.”

 

            Sudden consternation. The doctor is still with her first appointment, but they took the man scheduled after me to the other examining room to be seen next. I am assured that I will be next but they must wait for the current patient to exit the examining room, clean it up, take me in and then see that the doctor sees me next.

 

            A woman walks out and stops at the window to pay. Her husband, driving an electric wheelchair, soon follows. A few minutes later the assistant appears telling me to squeeze past the wheelchair and come on back to the room they just vacated. As soon as I am seated, the doctor appears carrying a large envelope of MRI films and a file folder and apologizing for the delay. My blood pressure has been a bit high lately – 142 over 89 – but if they checked it right now, I swear it would be off the charts. I am furious with inefficient receptionists with booming voices taking personal calls at the office. Screw her birthday. My visit here three weeks ago cost me $450 and I expect more professionalism.

 

            Dr. Hansen takes a seat in the chair facing me and opens my folder. Glancing down through three pages of blood reports she informs me that everything looks excellent, commenting that my diet must be good. The only report at all unusual is that my blood oxygen is a little high. I nod, thinking, “Yes, I’ve always had excellent health,” wondering if she is going to tell me not to rest my elbow on the console of the car because it is causing a problem with circulation in my shoulder and arm. Then she starts using words that are not at all familiar like “motor neuron disease” and “Amyotropic Lateral Sclerosis or Lou Gehrig’s Disease.”  She tells me she had to see me to discuss this diagnosis in person and that she is referring me to a specialist in San Francisco for a second opinion.

 

            I sit stunned as she briefly describes ALS. “A diagnosis of Parkinson’s Disease sounds like it would have been a blessing,” I blurt out as I burst into tears.

Mike Bougher

Mike Bougher Biography

 

Although at 44 years old, I am paralyzed from the neck down and unable to smile, breathe without a ventilator, or speak after being afflicted with ALS, please don’t feel sorry for me.  I am happier, and more fulfilled than I have ever been.

 

When I was of an impressionable age, a wise man taught me the phrase “The world is a smorgasbord, but most suckers are starving to death”.   This concept became ingrained in me, and I live it every day.  I have traveled far, had many diverse adventures, and look back with few regrets.

In my life I have performed as a professional magician; been a member of the pit crew for a drag racer; played the drums in a professional country/rock band; married an amazing woman; learned how to cook well enough that it became a passion; watched my daughter grow into a beautiful, well grounded young lady; shared life energy with wondrous twin grandsons; walked on four continents (actually I rolled on the fourth one); watched the sun rise over a sleepy fishing village in Portugal; dined on Paella and Fino in the ancient streets of Cadiz, Spain; bargained for a hand crafted carpet in The Kasbah of Tangier, Morocco; wandered the galleries of The Prado in Madrid; ordered and smoked marijuana in an Amsterdam coffee shop; strolled through a medieval castle in Scotland; danced through the streets of Port of Spain, Trinidad, sipping rum, in full costume, to celebrate Carnivale; hovered over The Great Barrier Reef in a helicopter; cradled a joey (baby kangaroo);  visited the sacred Aboriginal site, Uluru or Ayers Rock; rolled through the rain forest in Costa Rico; wept at The Viet Nam Memorial Wall; looked upon the grave of General/President George Washington; observed the changing of the guard at The Tomb of the Unknown Soldier; sat in on sessions of The US Supreme Court, House of Representatives, and Senate; and been lifted through the locks of the Panama Canal.

I was raised on a small farm just North of Vacaville, California and was a professional magician and drummer before graduating high school. After completing high school, I began an electrical apprenticeship at Mare Island Naval Shipyard where I primarily performed troubleshooting and repair of various cranes and electric vehicles. I worked my way up to foreman before being laid-off in 1990 due to shipyard closure.

 

I then began work for an instrumentation and process controls (factory automation) company. When I was diagnosed with ALS in July 1998, I was an estimator/system designer/project manager. I normally had two to four projects, in various stages of completion, running simultaneously. It is now clear to me that this was too much responsibility for one person. My ALS progression slowed to about 15 percent of its former pace when I decided to quit in 2000.

The expected life span of an ALS patient is 2 to 5 years from the date of diagnosis. This month marks my 10th year, and I am still going strong. One day, many years ago, it occurred to me that an ALS diagnosis was not the end of my life. I realized that if I got a feeding tube and a ventilator, I could live a lot longer, but quality of life would be an issue. I must surrender to that which I had no control (my body’s deterioration) and begin to build on that which still had great growth potential (my mind and spirituality). I could spiral downward into misery, or use my circumstances as a catalyst for mental and spiritual expansion. I had a choice! The elation that paradigm shift brought, became the spark that would inspire a profound transformation.

As my body has weakened to the point of being simply a support system for my brain, I have become more in tune with my true essence, the world has more meaning, and my appetite for and ability to comprehend new knowledge has grown.  Recently I have developed a passion for digital painting; and have been exploring Astrophysics, Quantum Mechanics, World History, Classical Music from the baroque period, the nature of human consciousness, Physical Anthropology of the Americas, the cultures, music, plights and spirituality of various Native American Nations, and Asian music, religions and philosophy.  In the U.S., the blind and disabled library provides a large selection of books on tape via U.S. mail.

I have always been a traveler, and always will be.  Because it is now more difficult to travel to distant places, I have begun a journey inward.  I am on a quest to move toward the full potential of human consciousness, and achieve a higher awareness of the universe around me (see recommended reading).  This pursuit has been just as fruitful and fulfilling as any trip to a foreign culture.  The souvenirs I bring back are extremely precious, and useful as tools to become a more positive force in this world.

If you were recently diagnosed with ALS, understand that it is not necessarily the horrible experience that most say it is.  From your unique perspective, you may have the ability to see the full beauty and diversity of this life.  You have a choice.

 

Recommended Reading  

The following books are selections I consider key on my spiritual path. I have used my local library to acquire the audio versions, read by the author, wherever possible. The list is in the order that the teachings unfolded for me.

 

1. Meditation for Beginners by Jack Kornfield

 

1. Power of Now by Eckhart Tolle

 

1. Five Classic Meditations by Shinzen Young

 

1. The Art of Happiness: A Handbook for Living by Dalai Lama and Howard C. Cutler

 

1. Being Peace by Thich Nhat Hanh

 

1. Change Your Thoughts Change Your Life by Dr. Wayne W. Dyer

 

1. A New Earth by Eckhart Tolle

 

1. 10 Secrets for Success and Inner Peace by Dr. Wayne W. Dyer

 

Although most of these authors are coming from a Buddhist or Taoist perspective, the practices and philosophies described are spiritually generic, and shouldn’t be in conflict with your religious beliefs. They are aimed at a western audience. If you do find something objectionable, feel free to disregard it. If you are interested in our current scientific understanding of reality, I found The Fabric of the Cosmos: Space, Time, and the Texture of Reality by Brian Greene very helpful.

 

 

For more information about my history, my art, or my spiritual journey, go to quadbliss.com .

Lori Coppola

Lorri was a P.E. teacher for 32 years and competed all over the world in masters track, winning a gold medal. She also carried the Olympic torch in San Francisco for the 2008 Beijing Olympics.

My ALS experience started out with the loss of my voice and ability to swallow. I have had a feeding tube since August ‘06. Just recently, I have felt the tiredness most ALS patients feel. I still care for myself and can drive. The anger never came for me- I meditate at times and resolved to keep up as normal a life as possible.

A book written by Dr. Bruce Lipton of Stanford, Biology of Belief, had a wonderful effect on me. The mind can affect the body on a cellular level was what his reseach proved. Having read the writings and attending a two day workshop with the Dali Lama, I had no trouble beleiving the book and research. At the start, I had been taking Tibetan herbs. Also, unknown to the people who created the “NEVER GIVE UP” statement of hope for ALS patients, which is on our red plastic bracelets, I have that same statement written by the Dali Lama.

Because the disease is moving slowly for me, I am grateful. I have a life I can enjoy…for now…I try not to dwell on the future…

“Live Each Day” was the motto of my class at Boston University, Sargent College, and I have resolved to do that.

Excessive saliva and relux are my most annoying ALS problems adn now my hands are weakening so friends are doing many more things for me and I am looking into home care.

I beleive the best thing I can do for my family and my friends is to stay positive…and as I also beleive “LAUGHTER IS THE BEST MEDICINE”.