Tag Archives: writing

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.

What’s up with my book?

This has been a great month of April.  My sister and eight-year-old nephew came.

To me, from Melbourne.  We saw.

The Canyon.  The museum.  And Wupatki.

They left east as the second week began.  To see.

 

Other places and faces.

A widely scattered, diverse family.

I love them dearly.

But, I was worn.

 

Then, ten hard days.  Like the first eight weeks of disability.

Too worn to stare beyond the walls.

But, ideas came.

 

Voice recognition, I am learning to love you!

And I now have folders, labeled for all my concepts.

Ideas filling them with story.

The narration of my ideas is now.

A slurpy concrete.

Setting, in mind.

Yoda rough skis do

=== 12:13 a.m. (Thursday, the 17th) ===
Small couch, east.

I just came home from Yoda rough skis do, <== isn’t this fantastic? This is what Apple’s voice recognition software heard, when I spoke into my journal, “I just came home from Jodorowsky’s Dune.”

It was my second time.  The first, I felt a deep spiritual connection to this man, Alejandro Jodorowsky.  I had heard of his creation, long ago.

I went again.  This time, to focus on his words.  The first time, I felt a bit dazzled by his originality.  This evening, I was prepared for the surprises, so my attention could remain on his words and ideas.

I can’t recommend this film highly enough.  See it, and watch how an artist thinks.

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.

What comes first?

In bycicle?
The ‘i’ or the ‘y’?
It must be the ‘i’.
Bicycle.
That looks better. I just need to remember.
It’s the same ‘b-i’ as bi-annual, or bi-sexual, or bi-headed. Because there are two wheels.
Why do I mess it up so consistently?
I blame my great-grandfather. My mom’s, dad’s, dad.
He changed Bykowski to Byke. My mother’s maiden name.
A family name. Damn it!
I know how to spell the family name.
But every time I try to spell ‘bicycle’, my brain inserts the ‘y’ before the ‘i’.
Will I ever get it right without thinking about it?

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.

 

 

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.