Category Archives: myotonic dystrophy

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.

My pact with you. Our common understanding.

I am going to begin posting a new narrative to my blog.

When I began this blog, I thought I knew what I wanted to say. My problem was that I had not yet identified the proper voice for sharing my thoughts.  And, I hadn’t fully understood my need to really distinguish what belongs on my blog, what belongs in my book, and what should remain in my own journal.

But, now that I have worked some of this out, I would like to begin sharing it with you.  But, I am going to share it in a series short posts that, in aggregation will tell a story.  There is a reason for this.  I promise to share this with you in due time.

I promise to post daily, beginning at some future date in the not too distant future.  I will begin posting daily after I have accumulated enough pieces to sustain my inevitable droughts.  I will tell you when my daily posting will begin.

Soon.  I promise.

Soon.

 

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.

Shh. Shh. Writer at work.

The blog has not gone.

Quiet.  Writer.  Preoccupied.

My creative periods come in spurts, between bouts of symptoms.

My book is my focus.  I am writing my calling card.

In this moment, between symptoms, I can be intensely productive.

I am on disability.  But, I no longer believe my condition should hold me back.

My book, if she sells, will be evidence I can earn my own keep.

Silence is the foundation on which all noise is built.

Sacred Space.

Within, I work.

Sorry to be so quiet.

I have been deeply working my book.  But, like my earthworm brethren, I do my best work under ground.

I am in a state of deep concentration, and I have been writing throughout the days.  The ideas start coming in late afternoon, and carry into the night.  I open my computer whenever thoughts present themselves.

Today, I am embarking on a new habit.  I am committed to breaking up the previous day’s writing, where appropriate, and putting the good stuff in folders I have created that outline my narrative.  (Scrivener is my writing application.  I love it.)

I realized that if I didn’t spend some time, each day, to consider my accumulated work, I will not be able to see the finish line for the trees.  On the way here, to my favorite coffee shop, in my wheelchair, I asked myself.

How much more work is involved?  I am not tired.  I am just trying to get a handle on this thing, and develop the large-view narratives within all my pieces.  Then, I can also begin writing towards the synthesis of the narratives.

I am hoping, by autumn, that the majority of the writing will be finished.  Then, I can turn my attention to the completed document, and begin filling in the cognitive blanks.  That’s how I see myself transitioning from lots of writing, to mostly editing.

— —

My sister sent me an email all the way from Australia, and shared a video she liked.

I liked it, too, and decided to participate in exposing a delightful, young artist through the Viral Net.

Kawehi.