All I want for Christmas...

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How was your November?

I finally understand that every passing moment is precious. "How did this happen?" You would think that after living with ALS for nine years, I would/should have learned this lesson already. But, it took the stopping of my heart, the failure of my lungs to work with the Bi-pap I depended upon for years, CPR, a trip to the hospital, ICU for six days, and a trache to open my eyes (lungs) to a second chance at life. I don't remember much of all of that… I do remember that I woke up to my greatest fear—no voice! At first, I was terrified, but gradually with the love and care given by my wife, son, friends, doctors and nurses, I was able to put aside the fear and accept this new stage in my life. It wasn't easy, and each day is presenting new challenges, but the unconditional love I am blessed with gives me strength to go on. Love written on the faces and gestures of my loved ones…Now, I only pray that I use this newly given time wisely and with a grateful heart.

I'm Home

I'm home. The view from my window has drastically changed. After six days in the ICU and the tracheotomy. I'm so thankful to be back with family, friends and caregivers. I'm not giving up.
Thank you for all the prayers and positive thoughts.
I will write more later.

Three Generations

My father (87), Me (58), and Son (25). Three generations of the Raker's.

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

Three Gratefuls

When I am feeling sad or down, which is more frequent these days, I try to think of three things that I am grateful for...They don't have to be prioritized or thought over--just whatever comes to mind. This practice came from a good friend, via gratefulness.org. It works sometimes, giving me a positive boost!
I am grateful for my weekly bath.
I am grateful for the positive decisions on marriage and healthcare by the US Supreme Court.
I am grateful for the morning showers that ride over the mountians on summer Tradewinds.

A Father's Thoughts

A father's thoughts

My son is 25 this week. Have I done all that is possible?

On the surface he has grown into a fine man. How much of that is me?

I wonder what scars my disease has left on him?

I'm grateful for the memories, mostly loving, proud and joyful.

They give me solace, as I lay here unable to make more.

I'm left with the knowledge that I tried my best.

It's his life now.

Beatiful June sunset from my window!

Priorities

I noticed early this morning just before sunrise, when I often have the deepest and darkest thoughts, that my priorities of day-to-day living have changed. Eight years ago, just after ALS entered my life, I focused on doing as much as possible…work, play, family. I was in a fight against the slow but steady loss of my physical abilities. Staying physically active was a priority. That battle lasted less than two years. When my legs and my arms no longer responded to the commands of my brain, I was forced to adjust my priorities. I retreated to my imagination. I still strove to be active, but my paralyzed body gave me just one outlet…my voice. This wonderful tool allowed me to stay active and productive. Writing stories became my daily priority. For nearly six years, putting my thoughts onto the page overwhelmed everything. I was blissfully ambivalent of my body's frozen condition. I gladly allowed my voice, my imagination, and the words take me. Late last year, I lost that magical ability…I am forced to reprioritize. I now focus on daily comfort, fighting to stay clear of congestion, and keeping depression at bay. My priority is to breathe, to love my family and friends, to seek spiritual balance and to stay mentally active. Strange, the manifestation of my daily priorities look different, but maybe they are still the same.

What are your daily priorities? 

Orchid From my friends

Many of my friends give me orchids. I love these flowers. They only bloom once a year, but the flowers last many weeks. They remind me of the importance of friendship. Friendship takes years to develop, but when it does the beauty of the relationship lasts.

Spring

Spring comes through my window in many ways... the burst of growth from the potted plants on the lanai, the breezes from the valley don't carry as much chill, insects buzz the flowers with more urgency... The most striking phenomena is the tilt of the Earth's axis now positions the setting sun so that I can enjoy the reflection off the building across the way.

Back to writing

Feeling much better these days. I have energy and motivation to write creatively again. With the help of friends and caregivers, I try to write a couple hours each day. I am working on a new book called, "Broken Spirit."  Its a story that takes place on a reservation in Montana during the early 1960s. I am co writing with my friend, Karen who lives in Montana. We have written 27 Chapters so far. Below I would like to share the first chapter with you. I hope you like it.

Broken Spirit

By Karen Lilly and RK Raker

Chapter 1

"Stay in formation! Keep your eyes open!" The sergeant yelled.

Riding through the Medicine Tail Coulee provided little protection from the Montana summer sun. The sky was a consistent cloudless pale blue. In the ravine, the wind was absent. It was hot and humid. Only the occasional clumps of Cotton Wood trees provided shade. The dust of the trail mixed with the greasy dry smell of tall grass. His dark blue wool coat and pants absorbed the heat. His skin itched from the rough material. The brass buttons on his uniform were hot to the touch. His hat was damp with sweat. He could think of a hundred places he would rather be. Every man and horse of the 7^th US Calvary suffered, but they kept the two columns tight—this was Indian country after all. Custer's scouts had sighted the Indian encampment just across the Little Bighorn River.

Finally, they came to a small ridge overlooking the river and the surrounding meadow. He saw teepees of the Sioux, Cheyenne and Arapahoe tribes in the distance nestled within a stand of trees. This was Sitting Bull's gathering of renegades—natives that refused to stay on the reservation. It was impossible to tell the true size of the camp because of the uneven terrain. He saw the smoke from their fires, the corrals built for their horses, a few men, women and children walking about unaware of the hell that the soldiers were about to bring. An anxious whisper went through the troops, "This will be a quick and decisive victory."

Lieutenant Colonel Custer called for his column to stop. They listened. The troopers heard heavy gunfire in the distance. The battle had begun. Major Reno had engaged the natives from the south, and now Custer's regiment was in position to hit the Indian camp hard from the north. Custer ordered his men to ride four abreast across the river and make contact with the enemy. The bugler sounded the charge.

This is the fun part, he thought. We get to splash through the river and join the fight.

He spurred his horse forward. It was apparent very soon that this was not going to be a usual skirmish. The Indians were standing their ground, even advancing. They were much more numerous than expected, and well armed—many with Spencer and Henry repeating rifles. The usually disorganized savages displayed a confident rage the 7^th Calvary had not previously encountered. The troopers were not slicing through the village as they had done on previous occasions. The assault stalled in the open meadow just across the river. Losses were heavy.

Custer gave the order to retreat. He led his men towards a small hill, ordering the soldiers to remain in formation. Several rings of braves, shouting and yelling from their painted horses, surrounded them. Smoke from their rifles and dust from the horses hooves spiraled into the sky. The noise was deafening. The ranks of soldiers fell into disarray. Chaos and disorder reigned.

"This sucks," he said to the soldier next to him, as they dismounted and let their horses run free.

The white soldier didn't answer. He was too busy kneeling, reloading and firing his rifle.

White asshole, he thought, probably one of the hard-core extras that volunteered out of Billings.

Tank Manygoats knelt beside the other troopers, forming a loose circle around  Lieutenant Colonel George Armstrong Custer.  The Colonel barked orders and stomped around flashing his yellow hair and cream-colored buckskin jacket. Smoke billowed from his polished silver Colt pistols. Tank half-heartedly fired a few rounds in the general direction of the Indians that surrounded them. He really didn't care enough to take aim. They all knew this was just a reenactment for the tourists, but some took it more seriously than others.

Tank hated the whole thing. The Reenactment was a new addition to the Warrior Weekend, just another way to attract more tourists. This final massacre really pissed him off. Here it was 1962, eighty-six years after the real battle and Custer’s Last Stand, and this was all the reservation could dredge up to cheer about—pathetic.

Tank Manygoats looked for his brother—Chase was one of the marauding braves. He really looked the part of a Sioux Warrior. Chase was the tallest in his family, almost six feet. His hair was jet black. His dark complexion and athletic build made him the perfect image of a native warrior. Just what the audience had come to see. He had even let his hair grow into long black braids.

Things came easily to Chase in life. Their mother had given him the honorable name of Chaska, which meant Oldest Son. She had probably loved Chaska. Everyone now called him Chase. He was clearly the favorite son of the Manygoats' family. All women wanted to be with him and cheered when he competed in the Iron Warrior Challenge every year.

Their mother had not given her second son such a grand name. She called him Tatanka Ptecila, which means Short Bull, and then deserted them both when it became known on the reservation that he was half-white. Now he answered to Tank. He had grown into his name. He was short and stocky, and generally angry. The Manygoats brothers never knew their fathers, and they were left to grow up with their maternal grandfather, George Manygoats. The three now shared a small, unkempt trailer on the edge of the reservation.

Just because I'm half white, I have to be one of the soldiers. There's plenty of full blood natives to be the warriors. Look at them, they're actually having fun. They get to ride around in nothing but breeches, wear war paint, ride the best horses, and flirt with the girls... fuck this. Most of those braves have a western saddle under their Indian blanket. They can’t even ride bareback anymore. It’s all just a show.

Tank spotted his brother, Chase, riding with the other braves circling the small band of soldiers that were still alive. Soon, someone would come into the circle to scalp him. They both raised their rifles at the same time, smiled at each other as only rival brothers can do. Then they fired.

kabang! kabang!

tzing! Something hit the ground next to him.

That's weird... he thought.

Tank reloaded his vintage Springfield rifle, aimed again and fired another blank round. He felt the kickback at his shoulder. His brother, smiled from his mount, took aim and returned fire with his Spencer rifle. It fired seven bullets to Tank's one.

Damn unfair—

WHAM! Tank felt hot lead pierce his ribs.

He fell backwards. His rifle dropped to the ground. His hat rolled in the dirt. He twisted left and then right, searching for air and gasping for breath.

What the—

There was no pain. He couldn't speak. He knew he was dying.

This is NOT a good day to die, he thought.

A brave with red war paint and a fake feather headdress came running up to him yelling his best war cry. He lifted him off the ground and pretended to take his scalp. In all of the excitement he didn't notice the blood, or he didn't care. He dropped Tank to the ground and ran off to join the fray. The great yellow hair, George Armstrong Custer had been defeated. The celebration began.

Hundreds of spectators were seated on the wooden bleachers, enthralled with the action. They had gathered from big cities and little towns across America for the event. Many were cheering—everyone was applauding the action. The victorious braves paraded in front of the audience. The defeated soldiers gathered their horses and prepared for the next part of the show.

No one took notice as the lifeblood drained from Tank's body.

The big sky winked at him just before everything went black.

The hamster and the gecko – a survivors story

Preface

I was watching NHK news a few days after the March 11 earthquake and tsunami. The coverage of the tragic and unfolding events in Japan was unprecedented – there had never been so much technology available to record a natural disaster of this magnitude. The raw footage was shocking and the 24-hour media coverage of the aftermath was mesmerizing. Like so many, I was glued to the television – I wanted to look away, but I couldn’t.

An older man was shown walking through the rubble of one of the devastated towns. The camera, of course, was following, waiting for that one shot or one quote that would make the evening news. He walked in a steady fashion; strong Japanese legs carried him through the mud and over the remnants of his neighborhood. We learned that he was a volunteer firefighter who had left his family at home when the tsunami warnings came over the sirens. It was his job to secure the first line of defense near the harbor.

He stopped suddenly and turned towards a house that had been flipped on its side and dumped near a gray stone wall. The reporter shoved a microphone in his face and asked him a question off-camera. Tears welled up in his eyes and his face wrinkled with emotion. With a cracked voice he said, “There is nothing to say.”

The moment hit me so hard. I was stunned and shocked all over again by the enormity of the tragedy. I could feel this man's despair through his silence.

I thought, “Yes, there is nothing that can be said in such a situation,” but somehow, all of us who were not there have to say something. Each one of us has to decide what we can say and how loud and far that voice can go. We have to speak for those who cannot.

The following short story is my message of hope – the words are my voice.

Thoughts about golf

Golf was always a wonderful hobby for me. I started to play when I was just 12 years old. For many years I played two or three times a month with my college buddy, Bob. These days I don't get to play, but he sends me pictures from the golf course. I thought I would share two of the recent photos.

Sometimes late at night, I visualize myself on the golf course. I play every hole, every shot. Its amazing that my memory of the golf course is so clear. Even though I can not physically be there, I am there in my mind.