The Disease of Writing is Writing with Disease

Ever wish for something that comes true in an unexpected way?  It happened to me in May of 2013.  Five years before, I began to write.  More recently I began to wish for increased writing-time.  In fact, I first wished for this about two years ago.

As I began to take my writing seriously, a lot of other things began to seem like distractions.  Even work.  Something was telling me to move my writing to the forefront.  Make it the focus.

Coincidently, this was about the time my symptoms were growing obvious.  For the past twenty-five years I had been explaining them away.  Easy to do when small and mild.  But, here they were, all grown up, demanding my attention.  Especially the pain.

Fingers and toes, hurting and tingling?  Must be my imagination.

But, my whole body?  What the hell is this?

And, why were my hands and feet clenching up on me?   The outer edges of my hands would strain to touch my inside forearms.  And my feet would ball into fists.  I had no control over this.  I began to seek medical opinions.

After eight months of doctors I received a diagnosis.  I had something called myotonic dystrophy type 2.  An adult form of muscular dystrophy.   Odd and unwelcome.

Go away, I wished it would, at first.

Now, I wish no longer.  A wish is powerless against the inevitable.

I continued to work.  I loved it, actually.  I had switched from teaching math to writing software.  Most days were a joy and getting paid to solve logic-problems was an added bonus.  I lasted a day-short-of-a-year after the diagnosis.

It came during the month of May, 2012.  Muscular dystrophy, probably mild.  Can’t be that bad.  Maybe I would need a cane in my old age.

The ensuing year played out slow.  A series of bad surprises.

For instance, two months after the diagnosis I suddenly needed that cane.  My legs failed me as I walked the town of Flagstaff.  I found one at the Peace Surplus store.  It was a walking stick, and a monopod, for hiking photographers.  But, it would have to do.  I just needed to get back to my parked car.

I bought a second cane with a more traditional handle a couple months later.  I was surprised again during a bad bout of symptoms when I needed both to walk steadily.

Even now I typically get by with only one.  But, I don’t walk much any more.  To the car.  From the store.  To the bathroom.  From the patio.  If any distance is involved, I use two.

By January of 2013, I was struggling with something else.  I couldn’t even identify it at first.  But, by March it became obvious.  I was exhausted.  I had stopped doing everything in life except work, and trying to write.  I no longer took care of the house.  The yard was full of weeds.  The floors were filthy.  Dishes were piled in the sink and all I ate were frozen meals.  Many days I didn’t write at all.  I came home, fell asleep, and woke again just in time for work.  In fact, most days the combination of weakness, stiffness and pain were too much.  The last eight weeks of work, I was only able to put 1 or 2 days into a full seven.  And those were not productive days, either.

By March I realized that the force of my will meant nothing without the cooperation of my body.  I spent two more months coming to terms with this, before leaving work.  May of 2013.

Since then I have been rethinking my life.  My physical capacity is shrinking.  But, I still have goals.  I was a writer before I became disabled.  And, while my journaling helped me through these past couple years, I still have a book to complete.

This blog is an outgrowth of my journaling.  And my journaling is the one great habit I acquired as a writer.  I became a writer, five years ago, when I first began writing a story from my imagination.

Someday I may revisit that work, and complete it.  I stopped when thoughts began to intrude during my writing.   Thoughts about God.

At first, I would write them down, just to clear my mind.  But, as I gave them voice, they took over.  Sometimes I would need an hour or two, just to get everything down.  The two best hours of each day.

After filing for disability I began to see these thoughts as the subject for a book.  It was obvious from my journals.  And my journals had become the place where I wrote about my writing.

My writing has just a few main subjects.  God.  Atheism.  My growing disability.  And the writing process.

This, then, is the inspiration for my blog.  I am writing a book.  I am sharing with you my thoughts on writing.  Both as a subject, and as a practice.  And also.  Thoughts about God.  Thoughts about no God.  Thoughts about consciousness.  And thoughts on disabilities.