Motivation

Don’t just sit there …

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.

Jul 232013
 

A photo of Earth taken from nearly a billion miles away by Cassini orbiting Saturn. I am in the picture.

Living with a progressive untreatable disability like inclusion body myositis can be very difficult, but it is not rocket science––or is it? Friday, July 19, I toured the NASA Jet Propulsion Laboratory in Pasadena California, and shot lots of video footage with my new GoPro Hero 3 Black camera. It just happened to be the day that the Cassini spacecraft orbiting Saturn was going to take a picture of Earth. Many of the employees of JPL were out in the courtyard waving for the picture. You cannot see them in the video but you can hear them. I also included the picture that Cassini took of Earth, with the assumption that I am in the shot. The shakiness in the video comes from my inability to hold my hands very steady. I should have used my helmet mount, but I thought that might give security some problems.

Now about the rocket science. To begin with, it turns out the Jet Propulsion Laboratory is no longer that concerned with jet propulsion other than hitching a ride with a rocket to get to where they need to go. Their main focus these days is on robotics. Their mission control center is all about sending and receiving signals through millions and even billions of miles of space. For example, the photograph that is on this page and featured in the video showing Earth as seen from Saturn, was taken by the Cassini orbiter. if you wanted to be in the photograph (not that anybody would really know you were) you needed to be facing Saturn and smiling and waving about one hour and 20 min. before Cassini actually snapped the shutter. That is how long it takes the light waves to get from Earth to Saturn.

But on a more down to earth example, the camera I used, my GoPro, is a marvel of technology in its own right. Slightly larger than a matchbox and not much heavier, it can shoot video that is 4000 pixels wide and I control it with my iPhone. Despite being unable to move my fingers, I was able to compose a fairly complex score to go with the video using Logic Pro software on my iMac and a Korg Nanokey keyboard that is perfect for me since the keys merely need to be touched. The video editing was done using Final Cut Pro X, an amazing software program that puts the equivalent of a million-dollar video production studio onto my desktop for a cost of about $300. Finally, I am dictating this entire blog, along with tens of thousands of words that I have recently written for books in progress using Dragon Dictate voice-recognition software.

Thank you scientists everywhere, and please keep these wonderful innovations coming!

Jul 212013
 

Mike wearing GoPro

Here I am wearing my new camera. I just have to be careful not to nod my head if somebody waves to me!

Every time I think I have hit upon a pastime that I can continue to pursue despite the progression of my illness, I discover how wrong I was. When I was forced to give up work, I took up painting. That lasted for 10 years until my arms and hands became too weak to guide a brush. So I decided to take up writing a blog. But that meant I had to overcome the weakness of my fingers – fortunately voice-recognition was improving and it is a pretty good substitute. However the other part of writing a blog is photography. Over the past few months my hands and arms have become too weak to hold the camera or cell phone and press a shutter. Since part of my new “job” now that I am living at Huntington Manor assisted living is maintaining their website and blog, photography is a very important part of my work. I was about ready to throw up my hands and quit (except I cannot throw up my hands anymore) but then I was watching a NASCAR race and one of the cars was sponsored by GoPro. I had heard the name before and knew that it was some kind of camera system, so I looked it up on the Internet. I discovered that the GoPro was a very compact camera that had been designed by surfers to allow them to make videos of their rides. It soon spread in popularity and was used by skateboarders, skiers, model airplane builders, free base jumpers, and just about anyone who wished to make a video record of their exploits. It came with a waterproof housing of course but that did not interest me so much. What really caught my attention was both its light weight and the fact that it could be controlled remotely using an iPhone app.

I visited my favorite store (Amazon.com), read about the various models and ordered the GoPro Black, the one with the highest resolution. I also ordered the special mounting system that goes around the head. Now I have a camera system that I can take with me without having to hold it in my hands, and I control all of its functions from my iPhone resting on my lap. I have been using it for a couple of weeks now and have already produced a major video for Huntington Manor as well as taking the number of other photographs. It does not have a zoom, but it has the capability of taking very high resolution video, double the size of high-definition, which means that I can use video editing software to zoom in on sections that I have shot, without winding up with fuzzy, pixelated video. Below are my first videos produced using this camera.

I have included this link to the GoPro camera description on Amazon in case anyone is interested in getting one for themselves. There are three different models, but I highly recommend getting the highest resolution “Black” model which would then allow zooming in postproduction.

This is a video I made about the Huntington Manor Summer Picnic. It includes the food preparation in the kitchen as well as the event itself. All the video was shot with the GoPro camera, and edited using Final Cut Pro Xon my iMac. The background music was created using Band in a Box, The only way I can create music these days is using that program. I can use one finger to type in the chords and a simple melody and it does the rest.

Here is another video shot with the GoPro. I placed it near the bird feeders at Huntington Manor and from a distance waited for the goldfinches to arrive and then started the camera recording. The video was shot at 120 frames per second to produce the slow-motion effect.

May 292013
 

The Korg nanoKey2 keyboard doesn't have conventional piano keys, but it works well for me.

This stupid disease (Inclusion Body Myositis} wasn’t content with taking away all of my physical activities like running and playing golf and tennis and gardening and cooking. It also took away the strength in my fingers so that I could no longer type (a major loss for someone who made his living as a writer) and so that I could no longer play the piano, something I had done since I was 3 years old.

But those who know me realize I am stubborn and so I have continued to search for other outlets. Recently, I decided to take vocal lessons. I had written a song that seemed to get fairly decent response from those who heard it, but it didn’t take a very critical listener to realize that my voice was untrained. I assumed it was due to lack of practice since there was a time when I had some vocal training.

I signed up for lessons but after the first couple of sessions I realized that my voice was not getting any better, and was perhaps getting worse. Then I looked at a video of me making a speech to the San Diego City Council 6 years ago, and I realized that my voice had been much richer then.

I did some more reading and research about the voice and realized that my vocal chords were nothing more than muscles, and unfortunately, that’s what my disease feeds upon. What has been happening is my vocal cords have been becoming weaker year-by-year. This gives a certain raspiness to my voice making singing difficult for me and unpleasant for listeners. Worse yet, with this disease if you try to strengthen the muscle that the disease is already weakening, it makes the disease process accelerate. In the 2 weeks of vocal exercises, I had actually damaged my voice more.

Now what? Well, if I’m going to the be sticking around on this planet for a while longer, I need something creative to do. I had tried to learn objective C programming so that I could write apps for the iPhone, but I found that my lack of working fingers made the learning process just way too slow and I gave that up. I am currently working on my memoirs, using voice recognition technology, and that is an interesting thing to do and keeps me occupied for a couple of hours a day, but I need more than that.

I’ve always enjoyed making music, although not having the ability to strike several keys of a keyboard at the same time made it tedious and boring. Then an acquaintance told me he was creating complex musical arrangements using a program called Sibelius. This intrigued me, as it meant I could develop a multi-part composition one note at a time. So that is my latest venture and I must say it is a lot of fun even though once again I have gotten into a brand-new area that has a very steep learning curve.

One interesting new tool I have just discovered is the KORG nanoKey2 keyboard. Most electronic keyboards are built to resemble a standard piano keyboard and as a result the notes are very difficult for me to press. This one has the same layout but the keys are much shallower and require less effort to press. If you are interested, Amazon sells it:

Should anything worth sharing come of my attempts I will post it here. As a start, I am trying to do a remix of my song, “I Won’t Stand for That!”

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.

Feb 092013
 

Mike and Beth at a winery in Washington state, 1998

Beth and I visited a winery near Seattle on a 1998 driving trip along the coast to celebrate our 24th anniversary. I had been diagnosed two years earlier and was still getting around using forearm crutches. Beth wouldn't be diagnosed for seven more years.

Over the past several months, I have spent quite a bit of time browsing forums that deal with loss. Loss of a loved one, loss of ability, loss of strength and mobility. It makes me sad to hear of so many people who feel that no longer being able to walk, or no longer having the companionship of a loved one, means that life is no longer worthwhile.

I went from being a low handicap golfer, avid hiker and runner, enthusiastic traveler, to being confined to a wheelchair and now being confined to an 11′ x 15′ room, especially when the weather is too bad to go out for a wheelchair ride. My wife of 38 years died in October, far too young, due to her own rare disabling disease (myotonic muscular dystrophy).

I definitely grieve the loss of my wife and loss of strength and loss of the life I once had. At least once a day that grief will be strong enough to make me stop whatever I’m doing and shed a tear. In fact, during the first couple of months after my wife died, the grief was so intense that it was quite painful physically. Rather than avoid it, I chose to accept that pain, experience it as deeply and fully as possible, and in that way let it help me heal. Years ago, a meditation instructor taught our class how to get rid of a headache. He said when you felt it coming on to focus on the pain as intensely as you could. Try to describe it, determine its focal point, trace it throughout your body. The remarkable thing was that once a person focused intensely on the pain it usually went away. It seems that pain is trying to send us a message and if we can pay attention, it won’t have to shout so loud. So that is Part One of how I deal with grief and loss; I embrace the pain and let it heal. In fact, I pick a fight with it by writing this blog and the new blog I have created celebrating Beth’s life.

Part Two is realizing that my life is about so much more than what I have lost. I have the comfort of feeling surrounded by family, even though many of them live far away. Beyond that, life is so exciting right now due to the advances of technology. My computer provides a window into a world that I could never have imagined when I was growing up. I can use Google Earth Street View and visit nearly any city or countryside in the world just by moving my mouse. One moment I can be “walking” beside the Eiffel Tower, the next I can be riding along the Pacific Coast Highway at Big Sur. Recently I have developed a keen interest in computer programming and have discovered the wonderful online courses offered by Stanford University. In fact I was just watching a lecture (on iTunes) by a Stanford computer professor and marveling at how much I felt like I was right in the room. That prompted me to add this article to my blog.

In a few minutes, the caregiver will deliver my dinner, attach my mobile arm support, place a bib around my neck, and I can enjoy my meal while watching the latest Batman movie on my computer. So yes, my life is populated by loss and grief, but they are joined by new sources of fulfillment. I hope that others in my situation are finding their own joy as we continue this surprising journey.

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

Nov 092012
 

BethTimeLine30x20sm

A visual snapshot of Beth's life.

The first time I held Beth’s hand, she looked into my eyes and my heart was stolen. The last time I held Beth’s hand, she closed her eyes and my heart was broken. But the glorious years in between have been more than worth the agony I am feeling now.

The places we went, the love we shared, the friends we made, the children we raised …

Our favorite things to do together were traveling and throwing parties. I always suspected that both were just excuses for a new wardrobe, but as beautiful as she was who could possibly say no?

We would travel by car usually. I liked to drive and she liked to sleep. Once in a while she would wake up long enough to see something along the way. When we returned, Beth would take those visual memories and turn them into incredible works of art. One was Maui jungle, where she managed to distill a week of driving around the island onto a 2″ x 3″ piece of zinc. That image won major awards and the edition of prints sold out.

When I was forced to retire due to my disability, I took up painting as well and we enjoyed our trips even more. We would come home to our studio and commit memories to paint and paper. This was a very happy time. But then I became even more disabled to the point where we could no longer be away from home at night. Beth began losing her eyesight and was diagnosed with her own physically disabling disease.

For a while, we continued to paint, drawing upon the memories of previous journeys. But for the past 2 years, painting simply stopped. Beth couldn’t see well enough and I couldn’t move my hands well enough and the focus of our lives turned to helping each other get by.

And now Beth is gone. But she is still helping me get by. Because she has left me with a lifetime of beautiful memories.

Her loss gives me great pain, but it is a small price to pay for the richness that she has left behind. Beth, I will always love you and I will forever thank you, for having been my wife.

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.