Feb 132014

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.



Feb 072014
Here is the cover for the paperback version of my book.

As most of you know (I hope) I have published the Kindle edition of Rolling Back: Through a Life Disabled. (You can see the Amazon listing by clicking on the link at the bottom of this post.) I had assumed that most people were now reading books electronically. However I quickly learned that many of you prefer to read books that you can hold in your hands, turn the pages, etc.
I remember those days. Unfortunately I’m no longer able to do that. But the good news is that there now are so many options available for reading on a screen. I am too weak to even hold a Kindle so I use the Kindle Reader on my computer. I have also recently signed up for a wonderful service through the local library called BookShare. It is for people like me who are not capable of holding a book. It is also for the blind. Once you have established your disability and have been accepted into the program, you can scroll through all of the books that a regular library might hold and select ones you want to read. They’re delivered instantly to your computer where you can either read them on the screen, or listen to them. I am very grateful that this program exists.

This is how I read (the 27 inch iMac) and how I write (microphone for voice recognition).

This is how I read (the 27 inch iMac) and how I write (microphone for voice recognition).

The paperback version of my book should be published in about three weeks. It has been a much more complicated process than publishing for Amazon Kindle. Both versions recommend that you work with Microsoft Word, but the publishing process for a paperback needs everything formatted to the exact size of the finished book.
Once the paperback is available you will notice its price is more than double that of the Kindle version. ($6.99 for the paperback versus $2.99 for Kindle.) This simply reflects the printing costs involved in producing a 134 page book with a full-color cover. If you’re curious, my royalty is greater for the Kindle version. I have received some kind reviews about my book. Thank you!

Sep 232013

As a disease like inclusion body myositis progresses, it does more than produce the physical changes you expect. It also has a way of taking over your life. It seems that every day I spend more time trying to find solutions to living with IBM than I do actually living. It is like I had just taken the most demanding job imaginable and simply have little time for a personal life.

This may be why I am able to tolerate my current living situation. Even though I am in a very comfortable room with a perfectly large bathroom and am surrounded with just about every assistive device you could think of, it still is not what a normal person would consider ideal. The other residents are nice people, at least the ones who are capable of speaking, but for the most part they are either older than I am by many years or have other issues that prevent forming a personal bond.

About two hours of every day is spent taking care of basic physical needs such as getting up, toileting, bathing, eating, etc. The rest of the time I generally spend at my computer working on the website and blog for Huntington Manor, updating my own blog and my wife’s memorial site, visiting friends on Facebook and posting to the various support groups related to my illness. Every so often I need to tilt my wheelchair back to a horizontal position to help avoid pressure sores and circulation problems and during that time, since I am basically staring at the ceiling or the sky (see video below), I generally focus on meditation. I usually spend one or two hours out of each day looking up information about living arrangements, adaptive equipment, etc., or making phone calls about the same issues. Then there are the doctor visits which usually happen one or two times a week. Even though the appointments themselves are not that long, they involve 8 to 10 miles of wheelchair riding for the round-trips, or even longer bus rides. If there is time left over, my latest Netflix treat awaits.

As I write this, I am not sad or bitter, I am simply amazed by the way I have been so completely taken over by IBM. Up until a year ago, my post-retirement time was more likely to be spent dealing with my wife’s myotonic muscular dystrophy, as it was a disease even more complex and, as we now know, more life-threatening than mine. But that seemed like a worthwhile pursuit and as long as there was hope for making her better, what else would I be doing?

Now here is where this analysis gets a little weird. When I look at the lives other people live, I do not feel envy. if I had to describe what I feel I would say it was puzzlement. Dining out, games, camping, trips to the beach, all the things I can no longer do, I don’t really miss. Somehow I feel like what I am doing is actually entertaining.

My biggest regret about the way I live is that I wish it could be more meaningful. I am sure everyone starts having such feelings as we begin to realize that one of these days will be our last. But I have a unique opportunity since I have almost no obligations other than arranging for the assistance I need to keep me healthy. I keep returning to writing in the hopes that someday I will write something that really has meaning. I am sure that makes me one of about half a billion writers who feel the same yearning.

Unfortunately, making the decsion to “write something meaningful” isn’t enough. I am reminded of the scene in Funny Farm where Chevy Chase is sitting at his typewriter, having left his job in the city to pursue a career as a novelist. He types the title, puts in another sheet of paper, types “Chapter One,” shoves the carriage return (something young writers may not know about) and sits staring at the empty page. For days.

One of the nice things about voice recognition is that an empty screen and listening microphone can’t apply the same pressure. Eventually it will hear some background noise and start typing random words, frequently expletives. For that matter I can just start talking gibberish and Dragon Dictate will not even raise an eyebrow as it spits the words onto the screen.

See what I mean?

A two minute sample of garden meditation.

Oct 092010

Script page with php code

Why was my life's script being written in code?

If you have been following along, you know that a slowly progressive, disabling, muscle illness (inclusion body myositis) caused me to rewrite the script I had written for my own life. Seeking a new challenge after no longer being able to write, play music, play golf or tennis, etc., I decided to take up watercolor painting – specifically plein air painting – because my scooter gave me a unique advantage for moving from one paintout vantage point to another. It was at one of those paintout gatherings that the next chapter in my life story began. I was asked if I would become the leader of the group – not because I was a good painter but because someone seemed to think that I might be well-organized. (They had no idea how compulsive organized I could be.)

The job consisted of finding a different paintout location for each week, making sure it had adequate free parking, restroom facilities, and subject matter worth painting, and then handing out a sheet listing locations for the next few months to the group.

Mike on scooter painting

From plein air painter to php programmer, now that's a rewrite!

Since there were between 50 and 100 possible locations, there was quite a bit of typing involved. I decided to convert the entire list into a database which made it go much faster. You can still see some of my work and 54 of the sites we visited by going to the Plein Air section of our Shirk Studios website.

About this time I joined the San Diego Watercolor Society (SDWS) and I was asked to become part of their Board of Directors in charge of Membership. Naturally I developed my own database solution for that job, since it involves keeping track of more than 750 members. I found this volunteer work to be very rewarding and continued to take on new tasks until eventually I became President of SDWS. Along the way I had been developing database solutions for a variety of needs, including staffing the gallery, monthly member shows and our annual International Exhibition. Eventually I realized I could save a lot of our volunteers time if they did not have to type in all of the information in the database. We already had a website, so I converted it into a dynamic site, using PHP and a Filemaker Pro database. This meant I needed to learn PHP programming and how to interface with the database on a website. It was a great challenge and I truly enjoyed it. I also enjoyed getting up (so to speak) in the morning and seeing true purpose in the way I would spend my day. You can see the results of my work at the SDWS Website.

After six years on the SDWS board, I “retired” and once again found myself at loose ends. But in the meantime, voice recognition technology was making great strides, and there was finally a good program for my Macintosh computer – MacSpeech Dictate. This meant I could think about writing again. Thus was born this blog site. And if people keep reading, I will keep writing!