Communication

My current thoughts on Communication: The ability to communicate easily, quickly and accurately is often taken for granted, especially now during this age of smartphones.  I am not one of these people. For me every communication, no matter how mundane or how complex, is a struggle. And every successfully communicated thought is a triumph. It is glorious when I am understood, but It is terrifying (frustrating, depressing) not being able to communicate my needs, opinion or comments. I am locked inside… my mind continues to push thoughts forward, but there is no effective mechanism for the words to get out. I have no voice, no ability to gesture… no easy to use technology (I use Tobi communication devices, PC-Eye Go is used for writing), so my caregivers and I resort to lip reading. Try it…very difficult, especially if the context is not clear.

This lack of the ability to communicate is the largest boulder ALS has thrown at me. It is the reason I have become anti-social. Attempts at conversation are exhausting…I apologize to my friends for all the canceled visits. And without a voice the quality of my life has diminished, but I try to remain positive. Thankful for the ability to watch and listen. 

Best of friends from HS daze

My best friend from high school, Matt Sweigart, was here on Oahu vacationing and giving Shiatsu lessons on the North Shore, and found time to visit. If you're interested in the lifestyle, art, philosophy and practice of Shiatsu, please check out his Facebook page and his fascinating videos on Youtube.

We first met in 1974 in the Pecan Groves at Wando High School, Mount Pleasant South Carolina. It was the first day of school for both of us— the school year had started a few weeks earlier. Matt and his sister had relocated from Connecticut and I had just arrived from Guam. We were all a bit apprehensive about fitting in to the lifestyle of the deep South. We became friends instantly…

It was great to see Matt again and to relive some of our (mis)adventures… I especially enjoyed reminiscing about the many hours I spent at the Sweigart house on Sullivan's Island. Being an only child, I found the Sweigart house with 7 siblings wonderfully busy, noisy and exciting. I will always be grateful for their hospitality, and of course Matt and Mary's friendship!

You can read more about some of my Southern experiences in my memoir, "A Remarkable Life…", available on Amazon.

Trach change

Today I had my first successful trach change.
The procedure was at my home. I did not have to go to the hospital thanks to the home health department at Kaiser.They understood how difficult it is for me to travel.
I'm very grateful for they'r effort and my caregivers. They all worked hard to make the procedure successful and stress free.
Happy New Year to you all.

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.