Tag Archives: myotonic dystrophy

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.

I want your permission.

To spread my thoughts among many short posts.  Because, I don’t have the energy to sustain my writing.  I am discouraged by my lack of progress. I want to share many things with you.  But, I may have to stretch my thoughts out over several days.

Some days I can only write a few sentences.  Others, I may post more pieces, or larger pieces.  Look for the common narrative.

In order to fulfill my promise to post daily, I will do it in short pieces.

I can no longer write lengthy pieces.  I will tell you why tomorrow.

But, for now, understand that I will stretch my narrative out over days, because this is the only way I seem to be able to work.

Today.

I am merely demonstrating how I want my posts to be understood.  If I write many short posts with titles, look for the narrative.  My narrative will be found among and between the posts.  I am forced to resort to this because of my muscular dystrophy.

There.  In my last post I mentioned that I would soon tell you why I am forced to write in small posts.  And now I am telling you.

I write in small posts because everything is difficult for me right now.  This is how muscular dystrophy affects me.

What is it like to wear a CPAP?

I slept hard last night.  My second night, not fussing with my new CPAP.  I’m getting comfortable with the machine.

Wearing one is a trade off.  Yes, it is slightly cumbersome.  But, I have had too many episodes in the middle of the night.  Needing to roll to my side.  Then, forcing myself up, so I can breathe again.

Not breathing is way more uncomfortable than wearing a mask that blows air into my nose, while I dream.  And waking, after a full night of deep and easy breaths, is damned refreshing.

I guess it took me three nights to get used to the mask.  The first night was my sleep-study return-visit, in which I was fitted for the mask.  I had a chance to try it out, and ask questions, and to be reassured.  That was over two weeks ago.

Then, my second and third nights were this past Wednesday and Thursday, in my own bed.  It took a while for the medical supply company to fill my prescription.

My first two nights of not waking were Friday and Saturday.  Even now, at least six hours after opening my eyes this morning, I feel better.  More alert.  Less winded.

I gladly wear this mask.  And, hope that my two cats don’t extend their claws while exploring this thing that connects my face, through a flex tube, to the grid.

This evening has been different.

Than yesterday, and the day before.

Same pain.  More energy.  But weak.

I didn’t expect much when I approached today’s writing.  It felt perfunctory.

Then, I got going.  In the past, I would flail for days, anticipating a revisitation by my muse, sometime after my symptoms would inevitably recede.

I would write for days, waiting for creative insights to return.

However, today, although I still feel crappy, my mojo reappeared.  I wrote a thousand words, most destined for some place in my story.

I am excited, because these past six months, I have been writing in my journal about these episodic symptoms that set back my mind, every time.  I knew I needed to overcome these ill effects.

Somehow, I trusted that the seemingly endless weeks of deep concentration would eventually pay off.

My second post back from today, I attributed my new ability to brain-rewiring.

My book is being physically wired into my brain, by my mind.

A first-time writer has more to overcome than a published author.  Both are telling a story.  But a new author has to figure out how to tell a story, before doing so.

A nascent writer’s brain is pure potential, until the secrets of success unlock themselves from past habits of thinking.

Until everything else in life became secondary to my book, I couldn’t appropriately focus my thoughts.

Until I could focus my mind, I couldn’t envision how to achieve that first draft.

Today, I can trust in the process.  Just write every day.

 

Elaborating on yesterday’s post.

While I retain the ability to think about my story, during this latest episode of symptoms, the willingness to write is diminished.

I can think about my story. I can have new insights. But it is still a challenge, in this state, to find the energy to develop the narrative.

That’s what I’m trying to overcome, right now. That is why I’m posting these brief thoughts.

Traction overcomes inertia.

Now, this is progress!

After I woke, I napped for three hours on the couch.  I am in that exhaustive phase, where pain is something in which I am immersed.

But, I vaporized some Blue Dream.  And, with it, and the extra sleep, I am alright.

There is something noteworthy in this experience.  Although I am dealing with the pain and the fatigue, I haven’t lost sight of my narrative.  This is my first experience of being knocked back, by my symptoms, but not out.  In the past, this is where I would have forgotten everything I was thinking.  In the past, my remaining strength would have bounced me between the couch, and my bed.

Today is different.  Today, I can still think about my book in a way that moves it forward.

I see this as behavioral evidence of brain re-wiring.  I started this book during the last few months of my employment.  And, I have been consciously developing a voice and a narrative during this last year.  My worst symptoms always seemed to make my creative work vanish.  Mentally, it would take days, or weeks, to get the creativity back, and more effort to re-develop the narrative, in my mind.

This is the first time I have experienced these symptoms and retained my creative faculties.

My first trip here, in my wheelchair.

I feel like hell today.  But, this is why I have this chair.  I can still do something.

I ran into my neighbor, and her daughter, in the driveway.  They were happy for me.  Then, at McClintock, I caught the bus to Southern.  Forcing myself to go beyond self-consciousness.  My first surprise was learning that the bus is not free to wheelchairs.  I thought it was.  My bad.

And now, here I am.  First time, in my favorite coffee shop.

In my wheelchair.

I received it yesterday afternoon.  In my driveway.  Running, again, into my neighbors.  I was very grateful, but I felt guilty.  I felt well enough, in yesterday’s hot afternoon, to question whether the chair was a necessity.

But, after dark, with a strong, spring, wind blowing, I took it for a spin to the corner store, for a bag of chips.  Just to have something to do on a dark and mysterious evening.

And yes.  I was high.

I caused a bit of a headache for the store owner, by trying to breach the front door from my seat.  It took a minute of struggle, before he came to my aid.  He apologized, profusely.  But, I insisted I needed to learn how to do these things.  And then.

I got stuck.  I made it through the door, and down the first tiny aisle, brushing some few snacks to the floor.  And, I turned the corner, to find myself.

Cornered.  No path, back to the counter, except from where I came.  I had to back up, because he had crowded the floor so tight with merchandise.  But first.

I grabbed a bag of Lay’s.  Then, the owner spent a couple, more minutes, backing me with hand signs and instructions.  Pronounced, Bengali.

I was embarrassed, because I could have used my cane and my car, if I really wanted those chips.  Instead, we enjoyed our own private circus, because I was curious to do this, once the day had cooled.

I hope he enjoyed it.  I thought it was fun, except for putting him out.

But, by the time I returned to the garage, and plugged it in, I had decided that, I only made the trip because I had the chair.  Otherwise, I did feel crappy enough that, before yesterday, without it.  I would have rationalized.

I wasn’t very hungry for chips.  And here I am, this evening, in my favorite coffee shop, writing.  This definitely would not have happened, feeling like this, before yesterday.

This is wonderful.  I am beyond self-conscious.  I am happy.