Writing

Apr 222013
 


Amazingly enough, I have had a few requests for the sheet music for this song I wrote. I have finally figured out how to accomplish that using a combination of Band in a Box and Photoshop. Please feel free to sing my song whenever the spirit moves you. (I’m sure you can improve on my rendition.) Of course, I am reserving the rights for any recorded or published versions of my song. Cick on each thumbnail to bring up that page of the song.
If you have trouble downloading the files, send me an email (mike@lifedisabled.com) and I’ll send them to you as an attachment.

Jan 292013
 

Two and one half years later and no longer able to paint, I'm trying to learn how to use the iPad and iPhone from the inside out.

I hope those who visit my blog from time to time will pardon my recent lack of activity. Some of the earliest readers may recall my chapter that dealt with rewriting life’s script when things don’t go the way you expected or hoped. Well I am once again needing to tear up the pages, or maybe hit the delete key, and put in some fresh paper (or RAM space).

The recent death of my wife left a big hole in every day and in every concept of my future. Couple that with the recent severe decline of strength in my upper body which deprived me of the joy of painting and I have been in a bit of a bad space lately. I realized that I needed a new challenge, one that relied more on mental gymnastics than the other kind. So I gave myself the improbable task of learning to write applications for the iPhone and iPad. Of course as soon as I got into trying to learn about that, I discovered how little I really knew about programming. So for the past few weeks I have been trying to learn C, C++, and Objective-C, along with the Apple integrated development environment called Xcode.

Fear not, I have not wandered off into some digital wilderness, as I fully intend to use my new skills, once acquired, to develop an app or two related to disability and to assisted living. I also might try to develop something related to the two diseases that I know so well – myotonic muscular dystrophy, which claimed my wife, and inclusion body myositis, which is trying to claim me.

I even might have some fun with an art application. But, first things first, I still have a lot of learning to do. So these days and nights I sit in my room at the assisted-living facility and watch instructional videos and try to do the exercises. It’s sort of like being back in college except I’m not eager to graduate.

Although I can no longer physically produce tools and garments that assist with the life of a disabled person, I can still think about things that might be useful. I am also going to be doing more articles soon about life in an assisted living facility, as it is really quite an adventure.

I am enjoying getting to know more about my late wife's early years.

The new blog site I am creating in memory of my wife, Beth Shirk, is underway. You are welcome to follow its progress.

Mike

Oct 192012
 

My daughters and I have spent the last few days working on Beth’s obituary. This is a task that should not be put off until the death of a loved one. There is so much we would want to tell people about my wife, their mother. But there is also the reality. To begin with, people reading the newspaper and scanning the obituaries are generally not likely to want to read a long story about how much someone meant to you. What’s more, at $10 a line, indulging in excess sentiment could quickly become very expensive–money that should be better used. So when it came right down to it, we realized the important facts of her life trumped the depth of our loss and the breadth of our love. Here is the finished product as it will appear in Sunday’s paper.

Obituary for Elizabeth Shirk

Obituary for Elizabeth Shirk as it will appear Sunday, October 21, 2012.

Oct 142012
 

Beth at Art Reception

Beth at an art reception last year.

Three nights ago I got those terrible phone calls. The first was from my wife’s new assisted-living facility. She was being rushed to the hospital. The second call was from my daughter who was on her way to meet the ambulance and said she would send her husband to get me. When I got inside the emergency room my daughter met me and said “brace yourself, it’s very bad”. Beth, my wife of 38 years was lying on the bed, a ventilation mask over her face, her chest heaving in response to the high amount of pressure they were using to force air and oxygen into her lungs. My daughter explained that without that she could not survive. Although my wife had a Do Not Resuscitate order, my daughter made the decision to allow them to take this extra step to keep her alive until I could be at her bedside and to give us time to bring our two daughters down from Orange County.

So we talked with her as her body struggled. She managed one-syllable answers and at one point opened her eyes and squeezed my hand. Then our daughters arrived and we gathered around and told Beth how much we loved her (although there really were no words that could possibly say how very much that was).

Beth on the beach with our daughters.

Each summer Beth and our daughters would stay at the beach in La Jolla for a couple of glorious weeks.


The doctor gave her pain killer and a sedative, then removed the mask. We held Beth and continued to talk with her as she struggled to breathe on her own. All too soon, she took her last breath and I felt her fingers relax their hold on mine. My wife, my soulmate, the mother of our children, was gone.

As I write this, there is no way to describe the agony. If I could, I would change places with her in an instant, but I can’t. Somehow I have to make sense of a life that doesn’t include Beth and try to use the time I have left to continue to write and help the world know more about the wonderful woman it has lost.

Spring Ahead Watermedia Painting by Beth Shirk

One of Beth's last works of art, Spring Ahead won many awards and now hangs in my room.

Aug 222012
 

As a writer, how can I find my voice when my fingers have always done the talking?

I have been a professional writer most of my life. For the first few years, I used a Smith-Corona typewriter. Then along came the IBM Selectric and I was in heaven!

When the correcting version came out I could hardly contain my excitement. During this time my typing speed kept improving until I was typing between 60 and 70 words per minute without errors – faster if I didn’t care.

Then, in 1980, I bought one of the first personal computers, installed WordStar and my typing speed increased even more. I could literally type 100 words per minute. Now what does this have to do with writing itself? In my opinion, it has a lot to do with it. One of the secrets to being a good typist is to not think about which keys you’re going to strike, just let the fingers fly up across the keyboard automatically, much as you would if you were a jazz pianist.

I really believe that this enabled my mind to be actively and creatively composing sentences while my fingers took over the mundane task of expressing my thoughts in letters. I also believe that is why I am now finding writing to be so much more difficult.

Using My Thumb to Type

As a writer, I'm now all thumbs.

My illness, inclusion body myositis, attacks various muscle groups, including the finger flexors. As result my fingers are now too weak to press the keys of a computer keyboard. I have two choices – I can either type with the thumb of one hand while using the thumb of the other hand to press the shift key when needed, or I can do as I am right now and use voice recognition by speaking words into my iPhone.

The problem with either method is that it forces me to think about the mechanics of producing each word, whether I am typing it one letter at a time with my thumb, or speaking it. This process seems to prevent me from letting my mind run free to be more creative in my phrasing. I can see a dramatic difference in the way I write now compared to the way I once was able to write.

I am interested in hearing from other writers who are either facing a similar predicament or those who think they have insight that might be of help to me. Please leave your comments following this post. Thank you!