Tag Archives: muscular dystrophy

NaNoWriMo Update #4

Everyone can laugh at me.  There are people with 20k words, 30k words, or even 40k words by now.  And then there is me.  I passed the 8K mark today!  While the pace has been slow, some amazing things have happened.  My muse is working overtime for me.  As I have worked up this story, several times a good night’s sleep results in waking with a completely re-arranged and deepened understanding.  Several days this past week were spent describing the story in broad strokes, or doing character sketches.  (Character sketches do not show up in my word count.)  I had my main character doing all of these amazing things.  And then I would sleep on it.  The next morning, these amazing things were in the hands of other characters.  Stories are developing within the story.

All week long I found myself pushing late in the evening to make a difference that day’s word count.  Two nights ago I asked myself why I was doing this so late in the day.  After all, every day I begin writing early.  But writing in my journal, and writing this story, are two different forms of doing.  Writing in my journal is second nature to me.  I look forward to it each day.  I haven’t missed a day of journaling in about four years.  Writing creatively is a different matter.  There is a voice for this book.  Some days, writing with that voice is next to impossible.  On those days, it is just so easy to waste time in my journal, fooling myself into believing that journaling is good enough.

Two nights ago I made a renewed commitment to write early.  My new motto is: Create Early, Create Often.  I don’t write fast.  But I am making progress.  No more broad strokes, though.  The focus now is on creative writing.  (Until the next day that the wheels of my mind inevitably gum up on me.)  I begin each day with a few paragraphs in my journal.  Just enough to verify that I am capable of documenting my thoughts.  And then I begin by reading my opening.  Reacting to my own writing.  Fixing what I don’t like.  Changing wording.  Providing more context.  Then I get to the end of what I think of as ‘the book.’  Everything after that is just broad brush strokes.   And then I work on the next paragraph of the story.  Tomorrow I will edit today.

NaNoWriMo meets Shut Up & Write!

On Monday evenings I like to go to Durham for Shut Up & Write!  I began going around February or March of this year.  It’s a way to get together and hang out with other writers for the purpose of writing.  We meet at 6 pm.  There is usually fifteen minutes for people to socialize.  Then there are quick group-wide introductions where we share our names and what we are working on.  A timer is set for one hour.  And then we work.

After the first hour, there is a break.  And then we do a second hour. During the sessions, no one talks.  Everyone writes.  There is something about sitting down with other writers and committing to an hour of work, together.  Maybe peer pressure plays a part.  But I find that during those two hours each week I can often get a surprising amount accomplished.

Last week I began narrating the NaNoWriMo novel in a certain voice.  I was able to maintain that voice for several days.  But by late last week I had to switch out of that voice, and start describing the book to myself.  I am not a pure pants-ter.  As ideas for structure come to me, I build that structure out.  I write with Scrivener, so building structure into the story is easy.  For me, this is necessary.  I can’t just write, page after page, from beginning to end.  I have to sketch out key scenes that define the story first.

Last night, I spent two solid hours sketching the full story.  Trying to identify all of the characters I will need to get to the end of the book.   Then I began trying to imagine their little world.  Their concerns.  Their issues.  Their hangups.  It was a very productive session.  But there is so much more still to do.

NaNoWriMo puts a focus on word counts.  But when describing a story to myself, I try to only make brief statements identifying the core developments of the story within that scene.  I try not to be wordy when describing the book to myself.  I don’t want to inflate my sense of accomplishment.

That said, last night I set a goal of reaching 5K total words.  I couldn’t make that happen during the Shut Up & Write session.  I got close.  I left for home needing 255 more words.  Once home again, I was able finally able to slip back into voice and begin write.  I called it a day when I got to 5010 words.

NaNoWriMo 2017

The past several years have been an up-hill struggle.  But I am nearing the crest of this mountain.  Physically, I bottomed out four years ago.  That was the year my body quit working.  Everything became so difficult to do that anymore, I wasn’t able to do anything.  I woke up tired every morning.  Sleep apnea, brought on by weakening muscles in my face and throat, and two or three dozen extra pounds, had me waking up gasping for air whenever I would fall asleep on my back.  I would doze off, the wind pipe would constrict, and dreams became nightmares about dying.  Wake up!  Adrenal glands would pump me with a hormone and neurotransmitter.  I would wake up choking.

Waking up was not enough.  My body needed to breathe.  Alerting the mind and synching it with body was just the first step.  Generally, I needed to sit up before I could breathe again.  But I had lost the ability to sit up.  So instead, I would roll myself off the bed or couch and onto the floor, and get up on all fours.  It never failed.  That first breath again was so calming.  So welcome.  Over time, this became routine.  Falling back to sleep was becoming an act of conscious faith that the driver of events in this world still wanted me to live.  What seemed to sustain me through these dark times was a story that wanted to be told.

Stories are mystical in nature.  As a writer, I am aware that I am writing a story.  It is a conscious process.  It is an every damn day decision to write.  But I am driven to write by the story itself.  She began by seducing me.  And then, once she had me, she tormented me and twisted our relationship.  She gained a certain power over me.  And she used it to beat my ego into submission.  I am not telling my story.  I am telling hers.  Hers is the voice that whispers to my intuition, not often enough, telling me to pay attention.  Pay attention to this or that.  There is something of significance here.  And then she would vanish.  I was being seduced by an elusive and unheard voice.  She was teaching me to listen.

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This past weekend I attended a writing conference, at Wrightsville Beach, put on by the North Carolina Writer’s Network.  This is now my fifth writing conference in the past nine years.  My first in North Carolina.  Their conference pricing was an incentive to join.  So I did.  I joined an incredible community of writers here in my new home state.

My last conference was in Tucson, Memorial Day weekend, 2016.  The Pima Writers Workshop.  That was the first (and still only) conference in which I submitted a manuscript to be critiqued by an agent.  An agent looking for special stories good enough to market.  I wasn’t looking to sell my manuscript.  I was looking for an honest opinion.  And I found it in an agent who took the time to tell me that I need to re-think my approach.  He told me that anyone who can write well can get published in fiction.  But that in order to actually sell a manuscript in non-fiction, you have to be someone.  And I was no one, he told me.  My professional background is in mathematics and computer science.  I am writing about philosophy and religion.  But he also told me that the opening of the book could stand alone on its own as a magazine piece.

A lot has changed since then.  When I heard these things, I thanked the agent for his time.  Later the next day the conference ended, and I headed back to Tempe, where I was doing everything within my strength to change my situation.  I was still married then.  I made the decision to separate in 2010,  with only inklings of what was to come.  We still owned a house together.  I was still working on that set of problems.

Now, I am divorced.  I sold off or gave away almost everything.  Many things, like bicycles and power tools, I could no longer use.  Other stuff had simply become clutter.  I am down to a bed, two couches, a table for the kitchen, some kitchen tools, some clothing, and my grandmothers old dresser.  I also have a desk for writing, and an incredibly comfortable chair.  A few simple hand tools for gardening.  Now I have a small house centrally located in Chapel Hill.  I can carry out my daily routine most of the time with just my wheelchair.  The only time I need to drive anywhere is to go to church on Sundays, to visit Mom or my sisters family, or to attend writing meet-ups.  Groceries, banking, most shopping, coffee shops and much much more are all within a mile or so of my house.

My muse is no longer elusive.  She has become something of a live-in partner for this project.  She like’s to stay in my head.  She’s always nagging.  Write.  Write.  Write!  The problems I had just solved were preventing me from closing a writing chapter, and moving on.

I am writing.  I have been writing.  But what I thought was just a book is actually so much more.  The book that I was working on will now be published in pieces.  I am going to plant the seeds of this story in journals and magazines, and let it begin sprouting in the minds of others.  Meanwhile, a kernel of fiction is sprouting in me.

Until now I have never had both the time and energy needed to tackle NaNoWriMo.  At the writing conference in Wilmington, after the business of Saturday was done, there was a NaNoWriMo launch party.  We didn’t write.  But wine was served and people who were launching a book got together with people who have completed NaNoWriMo projects.  I got home late Sunday night.  Monday was my official start.  I have 1388 words.

A hell of a week. A wonderful year.

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This week my furniture and belongings were moved from my apartment to my new pad.  A home I found in a fantastic location.  Close to everything I daily frequent, yet on a quiet wooded dead-end street.  My home is surrounded by pine, oak, and something I will share after I learn its identity.  When I bought the house I had to have a deck built to replace a porch that was never designed to hold a power wheelchair.  That project is mostly completed.  I am waiting on a county inspection before the deck and ramp can be finished.  After moving, my apartment happily suffered a disaster.  The night after my furniture was moved, I went back to the apartment to plug in my chair.  I can’t keep the thing at the house until the deck is done.  The next morning (Wednesday this past week), I went back to the apartment and found between 50 and 100 gallons of water in the living room.  It came pouring from the ceiling in the kitchen during the night and migrated into the living room rug.  Squishy squishy.  I reported this immediately to the landlord.  They drug their collective feet in addressing the issue.  By that afternoon, the apartment was smelly smelly.  That evening I wrote a letter demanding to be let out of my lease.  By the Friday evening, my wish was granted.  I am grateful I don’t have to pay those last two months on an empty apartment.  Although I am an atheist, it is moments like that which leave me feeling that maybe an angel does have my back.  I also had to get a new tire put on my van.  I had a slow leak that turned out to be a nail in the inner sidewall.  The picture above is of one of my two cats, Sylvia.  A year ago this is how she felt between our first and second moves.  This is how I feel now, after the third move in a little over a year.  Maybe I can finally settle down and share what I am up to.

Hitting a wall

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I spoke about patterns in my last post, before sharing some resolutions for the new year.  I am the type of person who notices patterns.  I have a mathematical mind.  I analyze things.  Today I would like to analyze the physical collapse I managed to survive in the past few years.  I have rebounded enough to begin putting things into perspective.

Myotonic dystrophy is a slow progressing disease.  I noticed my first symptom 26 years ago.  But only in 2011 did I finally tell my doctor that I thought something was wrong with me.  Each year for more than a quarter century I lost a percentage of my strength.  But I had to reach the point of collapse before I cried for help.  Looking back, I can see the role that nutrition and diet played in hastening my collapse, and magnifying the entire ordeal for me.

I aspire to eat healthy.  So those periods where I did not eat healthy stand in stark contrast in my mind.  Looking back, I have to wonder, what was I thinking?  What the hell was I thinking when I began eating at McDonalds?  (True.  The first time, back in the 1960’s, it was a treat.  Probably more for my mom, who didn’t need to cook that meal.  She prepared all the others.  I can’t blame her for allowing it to become something of a habit.  I let that happen.)

When I was in my 30s, I abused fast food.  I allowed it to become a routine part of my diet.  I allowed it to become normal.  (What the hell was I thinking?)  Back then, it seemed at times I was too busy to bother with trying to eat healthy.  Sometimes, just trying to eat and keep my pace up was all I could do.  I had too much on my plate to leave room for healthy food.  I was very driven.  (Still am.)

Because I could burn through calories so easily in my youth, the first effects of this period of unhealthy eating did not show right away.   And so, the habit unwittingly became ingrained in my repertoire of coping and survival behaviors.  However.  One cannot forever ignore the consequences of poor nutrition.  They show up sooner or later.

A few years later, my weight ballooned.  I am a shade under 5’10”.  When I eat healthy, my weight stays around 140 now, less in my youth.  As fast food crept into my diet, my weight began climbing.  Imperceptibly at first.  My low point came in my mid-30s when I reached 195.  On some people of my height, 195 doesn’t look bad.  On me, it went disproportionately to my gut.  I resembled my junior high track coach.  A man – pregnant with basketball.  (I hope he rediscovered healthy food before I did.)  Thus began my battle with weight.

My 40s was a decade of marriage.  A am grateful to my  ex for all her wonderful meals.  She knew more about nutrition than I did.  She prepared healthy food.  But by this point, I was addicted to the flavors of fast and junk.  My problem wasn’t her meals.  My problem were the choices I made when eating meals on my own, and snacking.

We separated in 2010.  On my own again, I knew I had to eat better.  And this is where I will leave the tale for today.  One year before telling my doctor I knew something was wrong with my health.

Establishing patterns

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So, yeah.  I picked up and moved.  For the past few years I had been stuck.  Stuck largely to furniture, thanks to gravity.  Stuck in a relatively small home that grew to overwhelm me as my strength diminished.  Stuck, in the sense that I had never been disabled before.  I had so much yet to learn and experience, before I could even begin to think of getting myself unstuck.

Four years ago I was still working.  48 months ago I had been living with my diagnosis for only about seven about months.  Working had become extraordinarily difficult.  Like a stubborn mule, I did not know I had to change my thinking.  I already was disabled.  But it wouldn’t register.  So I persevered into 2013.  March, April and May were the months that changed my thinking.  I kept missing days at work.  Every time I called in, I remember believing.  Even though I can’t move today, I should feel better by tomorrow.  My boss knew my situation.  And I had accrued close to a year in sick days.  Until the previous year, I never called into work.  I prided myself on my endurance.  By that spring, I was missing two days a week, then three, then four.  Will power and intention were no longer sufficient to move my body.

Things would eventually get a lot worse.  But now I live in North Carolina.  I relocated to be nearer to immediate family.  And I am dealing with things much better.  I still have muscular dystrophy (of course!).  In terms of strength, I am weaker than before.  But in terms of energy, and ability, I have improved.  In the coming days I will begin to share this story.

About three years ago I began this blog.  I was further into my collapse, but still hadn’t bottomed out.  I began the blog because I felt moved to write about my experiences.  Not so much the physical.   But the spiritual.  I was in the midst of another big change in life.  This one was about as profound as any I have been through.  While I felt called to write about my experiences, the act of writing was becoming increasingly difficult.

Back then, I was stymied.  My life was no longer moving forward.  It still had momentum, but mine had spun out of control.  Three years ago I wanted to tell this story.  Now, I finally can begin.  Back then, seeing my story was not yet possible.  I had lessons to learn, and difficulties to overcome.  I realized I couldn’t tell this story while living it.  First, I had to change my circumstances.

Now, I can begin to unravel things.  Here’s what happened, as I remember it.  First I crashed headlong into reality.  Recovery was an ordeal.  But eventually I got up and reassessed things.   I had to make a lot of changes.  But my life is finally moving forward again.  Attention to the patterns that make up my life was key.

For everyday, ordinary.

Writer’s block. I highly recommend three books. They were recommended to me. I’m just passing them on. I present them in the order I read them. These are the three classics, in my library of writing books. My hard copies are all on loan, and I don’t expect them back. Just keep them in circulation.

The first is Writing Down the Bones, by Natalie Goldberg. This book transformed how I approach my daily practice. In fact, I didn’t actually have a daily practice, prior to reading this. My first year of writing, I had a regular practice, but not daily. And, I focused on producing manuscripts.

Natalie completely changed my approach. She taught me to write from within a journal. Some people can produce lots of great books, just working up manuscripts. But, that’s not her approach. And now, it is neither mine.

The next is The War of Art, by Steven Pressfield. A book to disabuse the aspiring writer that there is any short path to success. It is work. It can be brutal. Get used to it. It is a job, like any other. Grind, in order to succeed.

The last is The Artist’s Way, by Julia Cameron. I have had a funny relationship with this book. First, Wen Ling had to hit me over the head with it (only figuratively), to get me to read it. I wouldn’t. Then, I actually began this book before The War of Art. But, I finished the latter, first. Then, after my diagnosis, and as my last year of software-engineering played out, I ignored the title on my Nook. My symptoms had overwhelmed me. I could sense that Julia’s book would require more effort than I could provide, in that moment. So it sat waiting for the right conditions, before I would open it.

I came back to it naturally, as I renewed my creative effort. I had just spent the better part of two years writing, or, as I imagine it, thinking physically, about all the stuff happening in my life. Wen Ling and I had separated. Then, I discovered I had this health challenge. Followed by an adjustment period. Journaling helped me to come through all of this with an optimistic and accepting attitude. Somewhere around November/December of 2012, I began to think creatively, again.

Initially, I wanted to return to the book I had abandoned, before my symptoms had begun to dictate my days. I had already discovered the first of five principles for dealing with my symptoms. (More on this in my next post.) I had had just an absolutely great concept for a book. But, when I tried to pick it up again, something was missing.

I found it difficult to resume that relationship. Too much had passed in the interim. The story felt distant, to me.

I needed new inspiration. This is when I turned to The Artist’s Way. I have seen a number of reviews, by people who say it is just a bunch of ‘New Age Hooey’. I completely disagree.

Julia Cameron will ask you to do some strange stuff, in the way of weekly exercises. For instance, one of the exercises I undertook was to pray for creativity. Now, understand, I am an atheist. But, I did the exercise, because I was serious about unlocking my creativity.

The book contains Julia’s philosophy, in twelve lessons, each with exercises. These twelve chapters are intended to be followed, in order, one chapter per week. And, Julia tells people that the exercises must be followed. You can’t unlock your creativity just by reading about it.

Well, I had a deep burning intention to do just that. This atheist prayed, and did a lot of the other exercises, too. I even adopted the attitude that I would take on the all of the difficult assignments, to better challenge myself.

Somewhere in week seven, my creativity unlocked. I began my current project. I’ll go back and finish the The Artist’s Way, someday. I think the people who pan the book are just too stiff to be exercised.

Writer’s block is no match for honest effort, and these three books. I recommend them all. Julia asks the most of the reader, in terms of follow-along practices. Brand new writers, I might tend to steer toward Writing Down the Bones, instead. Natalie appeals to the youth in all of us. The War of Art most resembles a pep-talk. Sometimes we need a good pep-talk. This would be a great book for a newly crushed writer, after sharing their first bad work. Pick yourself up. Get back on that horse!

These three books are better, for blocked writers, than what I will share. Instead, beginning in my next post, I will spin a tale of what happened after I took all three to heart, and tried to write a book as my health continued to deteriorate. This past year was my most challenging, yet. But, by applying the idea that my disease was just a form of writer’s block, I discovered some adaptations that have allowed me to find the energy, and the mental clarity, to begin my book. I couldn’t say this, even one month ago. Back then, when I told people I am writing a book, I never hid the fact that I wrote everything in my journal.

Now. I am beginning my book. It is no longer confined to my journal. I am back to working up manuscripts. In addition to journaling. (I would love for readers to share their favorite books on writing, in the comments section below. Or, blog about yours, and share a link to your physical thoughts, as a comment/pingback.)

Where? I am.

I will start by telling you where I am.  People, who know I am writing a book, often ask.  Well.  How far along are you?  How many pages have you written?  I can tell my answers leave them silently wondering.  So, today is just a progress report.  I know it seems weird that I need to begin my discourse on writer’s block with a progress report on my book.  I wish it was easier to explain.

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You see.  The problem is that my book is embedded in my daily journal.  Every day, a new page.  Here is how I now organize them.

I have a Journal folder.  Journal is broken down by years.  Years are broken into months.  And months, into days.  Days are pages.  All things, else, are folders:

Journal/

2011/

.

.

.

2014/

      2014-01/

      2014-02/

      .

      .

      .

      2014-08/

            2014-08-01

            2014-08-02

            2014-08-03

            2014-08-04:  This is the name of today’s page.  August 4th.

I find this particular YYYY-MM-DD format highly intuitive, because, the alphabetical is chronological.  No need to look for things.  My memories are embedded in time.  It’s easier to remember what I wrote by recalling what I was dealing with, when I thunk that thought.  And, it is easier to scan my work if it is sorted chronologically.  It synchronizes my eyes with my brain.

But, mind the zeros.  The zeros are necessary to retain order.  This would not work if I had named the 2nd as 2014-08-2.  Because, I would have a crisis brewing by the 10th.

My journal is all digital now.  But, I have volumes of spiral bound notebooks dating before 2011.  That year, writing by hand became difficult.

2011 is mixed between paper and digital.  It is the year my symptoms grew loud.  My new book actually starts around January of 2013.

Because, by then, I had received a diagnosis, and had the better part of a year to come to terms with what was happening to me physically.  By 2013, I was ready to move beyond it, as a subject for my journal.  I had accepted my new situation.  By the time 2013 was new, I wanted to write the book I had started, before my symptoms came, to occupy my thoughts.  But, that unfinished, old book, and those motivations, seemed too distant.

When I began.

This blog.

I thought, then, that I knew what I wanted to write.  But, I actually had some difficulty in achieving my objective.  I can see several reasons for this.  I will identify and discuss them here, and in upcoming posts.

My first problem is that, although I have been writing daily, none of it seemed appropriate for my blog.  So, my early practice was to post stuff from my journal that seemed worth sharing.

Now, here, I would like to introduce a subject.  I will call it my writing conscience.

My writing conscience has been nagging me to write specifically for my book.  And, write for this blog.  But, I was battling unseen forces.  And, sometimes you can’t clearly see your enemy until you gain the upper hand.