Jul 182015
 
"Point Pinos" is one of two of my paintings (along with one of my wife's) hanging in the permanent art collection of the Muscular Dystrophy Association.

“Point Pinos” is one of two of my paintings (along with one of my wife’s) hanging in the permanent art collection of the Muscular Dystrophy Association.

Ten years before this blog began, and several years before the term “blogging” came into general use, IBM had taken my life in a new direction. Besides forcing me to give up a career as a writer and advertising agency owner, it had herded me into a new career as a watercolor artist. Within months of closing the doors to my ad agency, I was opening books on painting techniques, design theory and color harmony. I joined an outdoor painting group, then became a member of the San Diego Watercolor Society – one of the largest groups of its kind in the world – and soon became a board member and eventually president.

This was   my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This was my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This new avocation gave me such pleasure and added so much meaning to my life that I had to share the news. I talked to members of our local Myositis Association (TMA) support group and they encouraged me to take my message to the national conference that was coming up in Houston. This was in 2003. The organizers of the conference also encouraged me and gave me a booth where I could display several paintings and hand out literature.

 "Monterey Bay" (15 " x 22 ") will be auctioned  at the 2015 national conference of the myositis Association to raise money for research.

“Monterey Bay” (15 ” x 22 “) will be auctioned at the 2015 national conference of the myositis Association to raise money for research.

Twelve years later, I have once again been approached by TMA to participate in their national conference in Orlando. Of course I cannot travel there, but one of my paintings is making the trip, along with this updated version of my literature (below). The painting will be auctioned with the proceeds going to benefit research into myositis. One session of the conference is about finding purpose in life following disability, so I am very pleased to participate in this small way.

 If you click on this image of the front and back cover it will make it large enough to read.

If you click on this image of the front and back cover it will make it large enough to read.

 This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

They titled this session “Act II” but if I could be there in person I might add that myositis is not necessarily a two act play. It has been nearly 5 years since I was forced to give up painting due to seriously declining strength in my hands and arms. Of course that led to yet another exciting pursuit – – writing a blog and a book taking advantage of voice recognition technology and electronic publishing. (Which reminds me, my book has been published for nearly a year and a half now and sales have slowed down considerably after beginning with quite a flourish. I didn’t publish the book to make money, in fact I have given away nearly as many as I have sold, but I am curious why it seems to have been forgotten. It was written to help people with myositis, especially those newly diagnosed, because this is not a common illness and coping with it is not a common skill. You don’t even have to pay for the book if you don’t want to because Amazon Kindle owners can read it for free. I’ve included the link below.

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.

Paperback:

Kindle:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

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.

Mar 112012
 

With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.

Since I was diagnosed with Inclusion Body Myositis (IBM) 16 years ago, I have been stubbornly maintaining my independence. I have made use of every technical aid that I could find, beginning with canes and walkers and scooters and ultimately graduating to wheelchairs and hospital beds and overhead ceiling lifts. I started with a swing away lift in the back of van to take my scooter with me wherever I went, then bought a van with a ramp and a transfer seat, and ultimately moved to a van with an ez-lok system in the driver’s position. All these were steps to allow me to independently get around. I adapted my bathroom and my kitchen so that I can could continue to cook et cetera. I adapted my studio, even my workbench in the garage. I designed and sewed special shoes, pants, and leggings. No matter what, this disease was not going to get the better of me.

Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.

The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.

But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.

I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.

Nov 082010
 

Ability Center Logo

My personal lifeline for wheelchairs, vans, and repairs.

Last night I had to write a very difficult e-mail message to the manager of the San Diego office of Ability Center in San Diego. My wife’s wheelchair had suddenly stopped working at the worst possible time as we were beginning a six week session of daily radiation treatments for her breast cancer. I explained to the manager that my daughter would be dropping off the wheelchair in front of their facility at eight in the morning and asked if there was any way they could fit in a quick repair. I was very lucky that they had a technician available and were able to do a temporary fix that put the wheelchair back in business the same day.

I have been dealing with this company since 1998, shortly after I was first diagnosed with inclusion body myositis. They sold me my first scooter, and my first van with a lift in the back for picking up the scooter and taking it with me. Since then, I have purchased two wheelchairs for me and a scooter for my wife and two more vans with ramps. Not to mention numerous other mobility aids such as walkers, crutches, sliding boards, and cupholders.

Here is the point I am trying to make: if you have an illness that is compromising your mobility, you really need to develop a relationship with a local company that sells the kinds of equipment that you will be needing. Yes, you can probably buy the same piece of equipment for less through a discount Internet retailer, but where will they be when you have a crisis? And believe me, you will have a crisis. What’s more, a professional mobility specialist will be able to help you get reimbursement through your insurance company or (in the case of my wife and me) an organization such as Muscular Dystrophy Association. They will (or should) also have experts who can make sure your wheelchair or scooter meets your lifestyle needs.

I have not been paid for this endorsement nor was it requested. I simply believe that good people and good companies should be recognized.