Friendship found in the yellow hibiscus...

Two wonderfully close friends that I had not seen for a long time came to visit with me yesterday. They left the beautiful hibiscus plant for me – remembered that I had said before that yellow hibiscus is my favorite flower. I usually don't delve into poetry, but the following lines seemed to fit my feelings after the occasion.

My heart feels so warm and full today.
My body was exhausted after your visit.
My soul bolstered.
Precious to spend time with you.

I watched the hibiscus flower open this morning.
Thirty minutes to unwrap to its full beauty.
Lovely to watch, slow and deliberate.
How long did it take for our friendship to blossom so?

Thank you for reading.
For laughing and caring.
Thank you for the love that lingers on the surface, but goes deep.

Early summer thoughts...

Here's a photograph of me enjoying the late afternoon sunshine at the end of the Judd Street cul-de-sac thanks to my good-buddy, "Paddleboard Bob." The days are getting longer and warmer... I hope that you take in as much of each day as possible, and that you are grateful. Let your skin absorb the sunshine, your feet feel the Earth, your hands touch the trees, and your arms embrace the one beside you. Let your senses bring the world closer—hear the roar of the ocean, smell the humidity in the air, taste the sweetness of life, see the kaleidoscope around you, and feel your heart beating to the rhythm of the cosmos.

Please don't cry...

I've been struggling more than usual lately, but the love I receive daily from my wife, son, father, caregivers and friends, keeps me anchored firmly in this present world.

I don't want to dump, but here's a quick update:

My ability to chew food and swallow has gotten weaker. I no longer have the diaphragm muscles that are needed to create a good cough. I often have choking spells. I'm not getting the nutrition that I know my body needs. This means that I have even less energy than usual. With less energy, I find that I am more sensitive to negative occurrences around me and more susceptible to being grumpy, antisocial and depressed. I have less energy to write, less energy to deal with my sometimes quirky computer software, less energy to be positive. I begin to avoid anything that requires effort. I don't get into my wheelchair as often—the pit just gets deeper. My darkness begins to negatively affect the people around me. A terrible downward cycle is created...one that could spiral out of control—less synergy, less joy, less...

The other day during a long choking spell, I noticed tears were streaming down my wife's face—a beautiful face that I know so well after 29 years of marriage. A reassuring face that I've become more reliant upon since my diagnosis of ALS. She has every right to cry, not just for me, but for the life that has been stolen from her as well. Long-term illnesses are shared, there's more than just one patient, one victim. There's more than one person suffering. Her tears burned into the deepest part of my heart. I wanted her to stop. It hurt too much already. I wanted to say, "Please don't cry..." I knew that would be a truly selfish request, so, instead I just said, "I love you."

"I'm glad you do. If you didn't this would be a tragedy," was her reply.

She is right. It's not a tragedy. It is difficult. We have challenges—physical, mental, emotional and financial, but we have each other and we are surviving. We still laugh. We still enjoy each other's company. We still live vicariously through our 23-year-old son, and we love him dearly. We still try hard to find some joy each day. We still look for solutions, for some way to make our lives better.

One solution we've decided upon is to have a stomach feeding tube installed the end of this month. My wonderful doctors and nurses at Kaiser Permanente are helping to make this happen. I'm nervous about the surgery—I am concerned that it may impact my ability to speak, but I feel confident that this is the right thing to do. If I can get regular nutrition directly through my stomach, I will be able to preserve my energy for other things other than trying to eat, and I will get the daily nutrition that my body requires. I hope this will give me the energy to break this dark cycle.

So, send me your positive thoughts and prayers. Love each other!

Dolphins Dance announcement sent via e-mail

Dolphins Dance (Second Edition) is now available on Amazon.com in print (soft cover) and Kindle versions.

This is the second edition of Dolphins Dance, completely rewritten with 30 additional pages and also reformatted with a new cover. The story is the same, but the voice and the writing have been greatly improved. The words are more solidly crafted, the characters are more developed, and the message, I believe, is stronger.

This second edition is the only version of the story that is authorized by me. The first edition, Dolphins' Dance (note the apostrophe), was published under contract with a vanity press publisher. My disappointment with their pricing and services is well documented. It took nearly four years before they would sell the rights of my book back to me. Please don't purchase any of the original books – there is a single dolphin on the cover and the price is over $20.

I'm very happy that through Amazon I am able to bring this revised version to you at a reasonable price, $12 for the soft cover and $3.99 for the Kindle version.

Thank you for your continued support. I believe that by writing and self-publishing my books, I have been able to stay productive. It has become my daily therapeutic endeavor to work on my stories – I'm hooked, I'll never stop writing. I believe this work has helped me deal with my daily struggle with ALS. Your support encourages me to continue.

*If you do not want to receive e-mail notices from me, please reply to this e-mail with "remove from list" as the subject.

Dolphins Dance, Second Edition – now available!

Dolphins Dance, Second Edition is now available on Amazon.com! Kindle and print versions are available. This is the reformatted and revised second version of Dolphins Dance ...

Dolphins Dance begins when a Honolulu man who has lived with a terminal illness for many years determines that it is time to gracefully exit this world. After a final farewell, his ashes are spread in the ocean beyond Makapuu Point. His spirit is reborn as a Pacific Bottlenose Dolphin along the coast of California. We follow the life of this dolphin as he is drawn back to the Hawaiian Islands. The story blends scientific fact about dolphin behavior with fantasy. Issues that affect their existence are explored by looking at the world through the eyes of a dolphin.

The dolphin, Strong Nose, rescues a college student, Jackson, after she has a surfing accident. Their lives are irrevocably altered by the experience. Strong Nose begins a quest to understand and communicate with humans. Jackie joins a marine mammal rescue team that saves a female dolphin from a failing marine park and releases it into the wild.  The rescued dolphin and Strong Nose meet and form a bond. Together, they travel back to the Hawaiian Islands.

Readers who love the ocean and are fascinated by the mammals of the sea will enjoy this novel. The author hopes that by sharing this story more people will be moved to protect and preserve our ocean.

This is the second edition of Dolphins Dance. The story is the same, but the voice and the writing have been greatly improved. The words are more solidly crafted, the characters are more developed, and the message, I believe, is stronger. This second edition is the only version of the story that is authorized by me. The first edition, Dolphins' Dance (note the apostrophe), was published under contract with a vanity press publisher. My disappointment with their pricing and services is well documented. It took nearly four years before they would sell the rights of my book back to me. Please don't purchase any of the original books. I'm very happy that I am able to bring this revised version to you at a reasonable price. I hope you enjoy it.

May is ALS awareness month – my response to the ALS organization

I have been living with ALS for eight years. I'm grateful that I made it past the dreaded 3 to 5 year life sentence most ALS patients are faced with. I don't know why... I can only say that I'm thrilled to be alive and thankful for the care given to me daily by my wife (primary caregiver), son (24 years old), my paid caregivers, doctors, nurses, and wonderful friends.

Did I do anything differently? Probably not, every ALS patient follows a similar but different progression. However, I did not follow the advice of my doctors and have a tracheotomy soon after my diagnosis. Instead, I chose to use a noninvasive ventilator (first a Resperonics BiPAP, and now the Trilogy 100). I wear a breathing mask 24/7. It doesn't look very flattering, little children say I look like an elephant, but I'm still breathing. It's bulky and difficult to sleep with. I also have trouble with eating – I will be having a stomach feeding tube installed later this month. I'm aware of the risk of not having the tracheotomy – there is the possibility of respiratory failure – but I believe the decision has allowed me to keep my voice.

I'm extremely lucky to still have this ability. It allows me to communicate my needs, keep some control over my life, use the computer with voice recognition software, and most importantly, it has given me the opportunity to write short stories, blog posts, essays and novels. Writing has become a daily ritual for me. It's therapeutic. It makes me feel as if I am still a productive member of society. I think that for many patients with ALS, staying productive is a daily struggle that affects our entire being – physical, mental, spiritual and emotional.

So, it's been eight years and I'm grateful, but living an extended period of time with a terminal illness has its own set of difficulties – mostly financial and emotional. I appreciate the efforts of the ALS organization to promote awareness and fund research for a cure and treatment. This is wonderful for ALS patients of the future, but to be completely selfish, I have to ask, "What's in it for me?"

I need help now! My wife needs some respite! We can't afford to pay for caregivers, medical costs, and keep our middle-class standard of living – bankruptcy looms. We need help navigating Medicare guidelines and the complex supplemental insurance coverage billing practices. Our medical system is not patient friendly. Medicare laws regarding long-term care, rental of durable medical equipment, home care, nursing care, etc. are extremely rigid and do not take the individual patient into consideration.

Living beyond the 3 to 5 year barrier is a blessing, but also a struggle. I ask that the ALS organization consider practical ways to help ALS patients now – please continue building awareness, funding research, but also look at ways you can support ALS patients while they are still alive and struggling daily to navigate our health care system.