Tag Archives: myotonic dystrophy

I have waited for this day.

Earlier, I was thinking how sometimes my writing sparkles clear in sunlight, while others it is muddy, often shallow.  I am learning to use this cycle to advantage.

I write best when my symptoms are at bay.  And, I keep them at bay.

Brushing them back with cannabis.  But.

Things break down.  Symptoms intrude.

I chase them, increasing my dose.  Hoping.

They go away.

Eventually, they disappear, but only after I bottom out.

I typically rebound.  A floor higher than the basement.  I found myself, in.

My ceiling, lower than some past, previous floor.

Rebound is when marijuana can inhibit my writing.  After chasing symptoms with heavier doses, and diminishing effect, I need that break.

Today, I hadn’t used any since the day before yesterday.  It’s subconscious subtle.  I don’t even notice a decision to abstain.  I just notice that.

By evening.  I haven’t used any all day.  And, I ask.

Myself.  Can I sleep the night without?

If I think so, I know.  I am bouncing back.

But, I still can’t write.  I can’t think.

I sleep.  I do things.  I move around, caring for vegetables, and two cats.

My camera takes photographs.  I appreciate that.  I enjoy this beautiful world.

As pain creeps back into picture, the game begins.

How long can I wait, as worse it gets?

Today, this evening.  A Thin Mint, vaporized.

Finally.  Feeling good enough to write.

Awkward

Out of my head.
Got it.
Down, in some physical form.
Memory, accessed externally.
Rather than.

Solely residing in my head.
For, only a moment.
Before gone. Write thoughts, to make them.
Real.

Unless written, they remain etherial.
Essential, and missing. Unable, too.

Make points. Make jokes. Make sense.

Speaking, more primitive.
Than writing.

Stumbling, over faulty recall.
That next word. Spoken tokens, embedded in grammar.
Queued up, within the mind. Around each thought. Then.

One wanders off.
Lost again.
In the dark unconscious.
Too shy to be said.

These last few days, more than a week.

DSC_0303

I am in a writing world, largely motionless. No inspiration here. Instead, I have been occupying myself with little things.

Dishes, and floors and weeds.

My sister and nephew are coming on Friday. With a little daily work, the home can present well.

And, while I knock out each task, I re-arrange my thoughts.

Some more.

How to complete the book? What is stopping me, now?

These last few days, more than a week, I am outward looking. I have turned to re-arranging my physical world, and it’s a lesson on my latest state.

Every so often, two or three times per year, these last couple. My strength rebounds. And I tackle things I could only dream of, the week before.

In the yard, I am installing a garden, designed to feed me vegetables through summer. In Tempe, the challenge is the extreme heat, typically in the 117-119 Farenheits range, at peak. I am only planting warm-weather crops, with which I have enjoyed success in previous years.

Swiss chard is surprisingly stout under the summer sun. I have them, twice paired, with collard greens and hollyhocks, in one grouping.

In two others, I am planting okra, together with cantaloups, cucumbers and three squashes. Zucchini, acorn, and kabocha.

Since the vines typically wither by July on their own, they will hang out, this year, under a lady-finger shade.

I still intend to pick up a yam and a sweet potato from the grocery store. Cut some pieces, to sprout new vines, while eating the rest.

But, I’m unsure about something.

Is this latest bit of ambition temporary? Or, can I make it permanent? I decided last week to tackle the disorganization and dirt surrounding me. Get the dirt out of the house, and organize the it in the yard.

I broke it down to simple tasks, like watering, and digging. Watering is an easy, daily activity. Digging depends on energy, So I bounce between the couch and the garden, throughout the day.

Dig, then lay down. Then dig some more, followed by another rest.

Thank goodness, these past ten years, for all the done-digging. Keeping it loose and easy.

Well, the shovel-work and planting is now largely finished, until fall. Next, I can vacuum and sweep and mop. Tomorrow through Friday.

The strategy is working, but, will it remain stable when I go back to writing? Can I do all three, in some measure, each day? Can I write, and still find the mental energy to also take care of my surroundings?

Although I am dealing with muscles at low strength, this challenge seems more mental, than anything.

It should be doable.

What is life?

I want to share something.  But, I’m going through one of these myotonic-dystrophy episodes, where exertion brings on pain and.

Moving is exertion.  The days go by, and everything I write seems to suck.

My difficulty writing is part of my MD experience.  The highs, and lows, roughly follow my symptoms through the months.

So, this evening, I vaporized Sour Diesel.

Cannabis overcomes the inertia built into my symptom-cycle.

And Sour Diesel begs for music.

I fell asleep to Kaya.   Bob Marley’s ode to marijuana and rain.

 

My windows and doors are open.  A storm approaches from California.  Sometime tomorrow, we should have our first rain since November.

We are overcast with winter warmth.  My two cats, and the neighbor’s, are playing tag in the wind.

Throughout the yard and house.

 

I woke to the question.

What Is Life?

Black Uhuru asks.

 

http://www.youtube.com/watch?v=X75h7gts31M

 

Something about this song speaks to me.

The experience of life is framed by contrasting interpretations.

The positive and the negative are both constants.

The choice is where to focus.

With disability insurance restored, health-insurance pays for a wheel chair.

I’m happy.  Although these last few days have been unproductive, in a writing sense, several good things happened this week.

Yesterday, I cashed the check from my disability insurer.  Cigna has decided to honor my policy, after reviewing my functional capacity evaluation.

There was no explanation from them.  No correspondence.  Just a check, arriving in the mail, the night-before-last.  All the money they owed, since December.  (Here is my last post on this saga.)

Even with high-confidence in my case, I carried a low-grade anxiety into this new-year.  I guess that’s natural when no in-come matches my out-go.  Now, I can dismiss that emotion.

For some reason, I anticipated a letter explaining why they chose to make my life difficult.  But, nothing says, we’re sorry, like a check.  I suppose I could call them, to confirm that this will now be honored for the life of the policy.  I don’t want another, bad, surprise from them, next year, or next month.

I also got fitted for my wheel-chair.  Health-insurance will pay for most of it.  The features on my model will be determined by another type of functional evaluation.  Insurance requires justifications for costs.

I had a couple of choices, between manufacturers.  One is Chinese-built for American overlords.  The other is American-made for Swedish overlords.  I chose the Swedish model.  It was recommended as more reliable, with more apparent-thought behind the engineering.

The Chinese-American model left motors, and other moving parts, exposed.  The Swedish-American model has those things largely hidden inside of casings.  Both chairs share the capability of changing postures and heights.  For instance, the seat can rise, so that I can work at my kitchen counter.

The Swedish-seat lifts directly from the base, on a metal rod.  The Chinese-seat lifts with a scissors-jack.

One looked like it was designed by experienced engineers.  The other resembled a lab-project by engineering students.

Some of the capabilities of the chair might be non-functional, depending on what insurance is willing to pay.  A fully-featured electric-chair could cost something on the order of $22,000.  A less-abled model could be as low as $16,000.  I should have new mobility, in roughly a month.

My motivation for it has more to-do with leaving the house, than living within one.  In-home, I still can cope.  But, leaving the house intimidates me now, on most days.  I don’t have confidence that my strength will hold up for these trips.  Mostly, I shop for groceries, or stop at a coffee shop.

I’ll get around by bus.  Between buses, light-rail, and my chair, I can begin enjoying some public spaces again.  I’m anticipating the opportunity, just to visit a place like Mill Avenue, on a nice day.  Right now, I don’t do this anymore.  My life is mostly spent at home, with brief trips to break the day into logical pieces.

And, this past Monday, I met with a doctor I have never met, because social security is still making a decision on whether I am disabled, or not.  I didn’t choose this doctor.  I received a letter instructing me to see him, at 9:30 AM.

I offered them my functional capacity evaluation.  They declined.  Instead, they had me meet with a doctor, who interviewed me, while performing the most-cursory of physical-evaluations.  I think his task is to determine whether my story makes sense.

He has my diagnosis, and my doctors’ notes.  But, a lot has changed in the last year.

The doctor collects fees from SSI, to determine if my condition is truly disabling.  The entire visit took place in about a half-hour.  Although I could see the necessity for some type of verification, SSI’s procedures seemed lacking in credibility.

The low-point of the visit was when the doctor took apart his pen, and asked me to put it back together.  This was the ‘dexterity test’.  He told me to pretend I didn’t see him take it apart.

I wondered whether seeing the pen being broken-down helps my dexterity.  I have been taking pens apart since the second or third grade.  Visualizing, how a pen should be assembled, is more of a cognitive test.

But, I didn’t argue.  SSI needed the results before they can rule me disabled.  And, somehow, assembling a pen speaks to my ability to earn a living, or not, programming computers.  At least, the doctor seems to think so.

These events served to occupy some of my attention.  The better-part of this week, dictated by insurance.

Good thing, too.  I’m fighting my way through an inspiration-drought.  I blame some of this on my condition.  But, if I didn’t have these moments to anticipate, this week would have left me less to say.

A poetic, yet realistic, statement.

A foundation, for Conscious-Writing.

Conscious-Writing is Conscious-Thinking.

 

The above-two-lines should be written on my blog as, a poetic, yet realistic, statement.

That could be the title.

The words, trailing the first comma, of the first sentence, of this stanza.

 

Realistic, in the sense that.

If Know-One is doing it, someone should.

 

That someone should be me, because.

There seems to be, a need-in-the-field.

Of Conscious-Awareness.

 

But, if Someone is doing it, then I should first join.

Discover what they think.

 

Responses would be welcomed.

A few, brief, thoughts.

I have been quiet the better part of a week.  Possibly, the best week of my life, in many ways.

Since my previous post, I have been in wheel-chair prescription-limbo.

It’s bizarre.  How strange our worlds?

Become, when insurance enters our lives.

It’s not my control.  It’s shared control.

In order to gain control, I have to learn how insurance companies think.  It’s what I imagine before.

The alien, suddenly, in my dreams.

And this has been possibly the best week of my life, because, for the rest of it, I have only been writing, and meditating on my manuscript. I am now in full book-writing mode.

Beam me up, Spock.

To a heavenly place.

Each day, when I begin to type.

Thoughts.  Not my own.

2014-02-07

=== 5:33 PM ===

XB

Writing table.

I’m probably too weak to be here responsibly.  But, I only realized after I was here.  Might as well make use of the trip.

Today I spoke to Aetna, my health-insurer, after speaking to the woman at the wheel-chair store.  Same woman as yesterday.  She’s in a scooter.  She told me.

She also told me my insurance is not accepted at their store.  Only Blue Cross.

My plan does cover some of the costs.  But, there’s a $600 deductible, and some other things I don’t completely recall.  They also only work with specific vendors.  The voice gave me the names of three businesses in Tempe.

I spoke to one of them.  I learned.  I also need a prescription.

So I called my doctor.  The secretary asked the purpose of my call.  After I explained, she turned me over to the physician’s assistant.

Voice mail.

I left a message.  I think she was gone for the afternoon.  I never got a call-back.

2014-02-03

It has been an interesting day.  It feels like winter again.  I think it last felt like winter in December.  This is Phoenix.

Overcast and chilly.  Oh Rain, you could complete this day.

We know you won’t.  But, you could.  Just try a little harder.

The morning was spent changing positions, from one couch to another.  Then some time outside, on the patio, to soak up memories of cold desert.

Handy.  Come summer.

Each time I moved, I limbered my limbs, until I was ready to leave.

Had to go to Mesa.  Or, Meza, as a self-described Mexican girl pronounced it, for fun, in her call to a local radio station.

Language changes, in the fascinated minds of youth.  Maybe, Meza is cooler than Mesa.  Or maybe she was just being silly.

I found the shop easily.  Seen it before, from the road to my mom’s oldest brother.

I don’t know when I actually started paying attention to wheel chair dealers.  But, in the last six months I noted the store, in passing.

Yesterday I brought it up to both Anne and Wen Ling.  Sometime soon, I’m gonna need one.  Best to start thinking about it now, than to start shopping after it’s already necessary.

The store was probably an old 7-11.  Like Lawson’s, to me in my youth.  Which of the two, neglected, handicap spaces should I choose?  And why was the official one furthest from the entrance?

And, why do wheel chair dealers need handicapped parking spots outside?  Who else would be parking here?

Inside was down.  Most of the wares were used and grey.  Painted sad, as if happy were forbidden.

Purple and banana would be wow.

But, the woman who helped me couldn’t have been nicer, or more helpful.

I will need a chair, not a scooter.  I insist on a high back with a head rest.  And motorized.  Can’t push myself when a mug of beer is too heavy to hold while talking.

She told me things to consider.

I sat in a few used ones, and thought of their previous, anonymous owners.

She also pointed me to a number of resources in the community.

She suggested I pay a visit to ABIL, the Arizona Bridge to Independent Living.

Another place I have passed, countless days past.

Never noticed once.  But, what a great idea!

There were more resources.  But, I told her, thank-you no.  The booklet she gave me, an index to local resources for the disabled, was plenty.

More thoughts for the road.  My Civic is probably too small to carry a chair.

Consider a van.

As I left, I studied the neighborhood.  It’s fun to imagine myself in the places I visit.

This neighborhood in Meza has been home to entire lives lived.

As children, my friends and I would ride our bikes to Lawson’s, to buy bubble gum and baseball cards.

And I imagine this store, and kids who bought theirs here.  As teens they might have made their first under-age beer purchases inside.

Is it possible to purchase a wheel chair from the same building where you once bought bubble gum and beer?  How weird if you did, without thinking.

2014-02-01

Man.  I slept hard last night.  Long and hard.  Woke up in pain.  The whole day was a slog.  Then I ate a couple magic brownies.

San Fernando Valley.  Ocean grown.  Much like a blue dream, in my experience.

Now the ingredients of my snack buoy my thoughts.  And I must say, what a wonderful day!

Medical marijuana lets me write, on days I wouldn’t without it.

So.  In a sense.  Cannabis enhances my productivity.

Productivity is not service.

To The Man.

Productivity is the essence of living.

Artistic expression counts.

One.  Two.  No?