Saturday, December 12, 2015
Tuesday, December 8, 2015
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.
Monday, November 23, 2015
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.
Thank you for all the prayers and positive thoughts.
I will write more later.
Wednesday, August 26, 2015
Thursday, August 13, 2015
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.
Saturday, August 1, 2015
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...
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...
Thursday, July 30, 2015
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.
Friday, July 17, 2015
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?”
Thursday, July 9, 2015
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]
Wednesday, July 1, 2015
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
Saturday, June 27, 2015
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.
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.
Friday, June 19, 2015
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.
Friday, June 12, 2015
Sunday, May 31, 2015
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?
Thursday, May 7, 2015
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.
Sunday, March 22, 2015
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.
Thursday, March 19, 2015
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 7th 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 7th 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.
Saturday, March 7, 2015
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.
Wednesday, January 7, 2015
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.
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.
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