Reading

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 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!

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.

Aug 042012
 

Note: At the time this series of articles was written, my wife Beth was still with us. She died October 11, 2012.

There is downsizing, and then there is moving to assisted living. Downsizing presents difficult choices of what to keep and what to take with you. Moving to assisted living presents impossible choices.

One way we managed to deal with it was to simply not make many of the decisions. Instead we had our daughters go through our stuff and make a lot of the choices for us, without us being present. Did we agree with every choice? Of course not. But it at least it let us whittle things down to a manageable size.

Another way to approach it is to choose between what you really need and what you think you simply can’t live without. In my case, since I knew I was going to continue to do work in the website design and graphics arts field, I definitely had to take all of my computer gear and cameras. Plus my manuals on software and programming. Beth wanted all of her art supplies, of course.

How do you downsize this?

How do you downsize this?

Clothing was also easier for me, since I really can’t wear standard clothes anymore. I just needed to bring along half a dozen of my specially constructed pants, and a dozen or so shirts. Plus some jackets.

Beth wanted to bring enough to fill several closets so we compromised by storing winter clothes off site and bringing all of her summer clothes. Then we will have to make the switch in the fall and hope we guess right on the weather. I also gave her half of my closet for coats.

Then there are the keepsakes. How could we possibly get rid of any of the vases that people had given us over the years? Well we had to, and every few days we will remember one that would’ve been just perfect for a particular location or occasion. The other really big issue was Christmas decorations. We have been allowed to store some here underneath the facility in their basement, but that still begs the question of what we will do with them come holidays. Perhaps we will be able to use some in a common area here at Huntington Manor.

It’s my belief that the key to this whole process is to try your best to live in the present. Every time we start thinking about things we left behind it becomes difficult. But in truth, nothing we left behind is needed for our daily lives. And the real memories aren’t stored in vases or garment bags. They are in the mind.

Which reminds me to return to working on my first book, “The Society of the Creek.” It is a book about childhood, written for an adult audience. I plan to post some excerpts here.

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

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.

Sep 202010
 

If you want to find the perfect example of someone who turned disability into a personal challenge and ultimately into spectacular success, look no further than Mr. Ralph W. Braun. Today his company, BraunAbility is the largest manufacturer of wheelchair-accessible vehicles in the world. Remarkably, he has been disabled for most of his life, and many of the products that help us so much today came about through his ingenuity in finding ways to overcome his own physical limits.

I know these things because I read his book, “Rise Above”. I have not been reading much lately, but when I opened this book and started reading, I was hooked. Don’t just take my word for it, here is what Tom Brokaw said: “This is a wonderful story of how one man’s disability and ingenuity led to a better life for those unable to walk especially military veterans. Ralph Braun found another way to serve his country.”

I received my copy as a gift from our local Braun EnterVan dealer, but you can also purchase one through Amazon (link below).