Category Archives: muscular dystrophy

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.

Some Thoughts…. I need to get out of my head before I can share my views on God.

I have received multiple invites to watch today’s debate between Bill Nye, The Science Guy, and Ken Ham.

One of the hams on stage is a creationist.  The other will represent evolution.  In a theatrical form.

Symbolically, we get to choose.  Which one is right?

But, I won’t tune in, until it has cured a few weeks, on a hook in the meat closet.  Away from the flies.

Right now I don’t want to watch it at all.  Because, I know which side is right.

Neither!  The reason we have these silly debates is because we aren’t able to move beyond our differences.  I want to talk about how we can.

*****

I have been waiting for the right moment to elevate the content of my blog.  Today seems perfect, for a couple reasons.

One.  I am more lucid to-day, than any other, these past couple weeks.  And when I am lucid, my thoughts drift to the big questions we all struggle with.  God, or no.  Life, and the before-after sandwich we call the spiritual.  And, consciousness.

Also.  Two.

There’s a reason for switching my voice, that allows me to discuss why my voice has changed.  It’s not puberty!  Just so no one is confused.

Voices change with thoughts.

The Ham-Nye debate somehow represents my own thoughts, and my blog.  How opportune!

So onwards from here.   Some days I will share my thoughts about God.  Others, I will think about the mind.  And still others, I will pull lint from my navel.  But, it’s all related.  Trust me.

At least now, hopefully I can launch directly into discussions of my beliefs about God, without feeling self-conscious doing so.

*****

You may have noticed that my writing often seems focused on ordinary things.  The useless riffraff, left from otherwise forgettable days.  And, yet, today, I am switching to the topics of God, and death, and understanding.  Even if, only my own.

But, my ordinary days are always related to the special, now that I pay attention.  I write about the ordinary so that I can draw on those experiences when discussing the extra-ordinary.  So, when you read about my day shopping for a wheel chair, or another spent dealing with the insurance company that cut off my disability payments, it’s because my ordinary experiences have some meaning for me.  And, I want to convey meaning through my writing.  But, I can only do so through the trial and error of everyday attempts.

I want you to see me for who I am.  I am sometimes neurotic.  And, I guess that makes me human.  And if you can see me as human, then you can read my thoughts without being offended.  And believe me.  Some of my thoughts will offend.  It’s why I don’t discuss them lightly.

*****

Here are some rules that might help clarify my posts regarding God, and no gods, and religion.  My first on the topic, but by no means, my last.

  • I reserve the right to offend.  I’m not trying to offend.  It’s just inevitable, if I am to express myself clearly.
  • You reserve the right to be offended.  Just know, I’m not doing it, like a comedian.  Whether you thump a bible, or got rid of yours long ago, my views might offend you.  Or worse, turn you off.  But, I don’t want anyone to think I am making anyone else the butt of a joke.  I may discuss a certain belief, and then tweak it to get a point across.  Once you feel that point, you might get what I am saying.  Sometimes offending each other is the only way we can communicate.
  • You reserve the right to offend me.  If I am wrong, please tell me.  I want to know, because I want to grow.  And I typically have to be dragged, kicking and scratching against the friction of my offended feelings.
  • We respect each other as human beings.  The golden rule doesn’t belong to any one set of beliefs.  I believe religious people can be rational.  I also believe that atheists can be irrational.   But, sanity is our common right.  We will never arrive.  But, it is possible to imagine how we will all be viewed one day by the survivors.

*****

I believe we can only understand properly through other points-of-view.  This is not a place where one of us is right and the others are wrong.  Common understanding comes through mutual understanding.  We each embody something the other needs.  And truth is never perceived directly.  Nor is it claimed as a battlefield prize.

This blog is not where you capitulate to me, or visa versa, unless one of us is seriously wrong.  This blog is where believers and atheists are welcome to commune.  I do believe a common understanding is possible, and that belief vs. non-belief is the wrong way to approach the subject.

Sure, it’s necessary for some people from each persuasion to duke it.  But, that’s only because they symbolize what we all struggle with.  And their fight is the topic of our discussion.  It’s the human way to understand.

The monkey way.  The tribal way.

At least, it’s my way.

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?

2014-01-28

=== 4:36 PM ===

XB

Yeah!  I got the writing table at my favorite coffee shop.  So called, because many write.  Here, over all the other tables.

I should be writing my timeline.  I had discussed it with the guy who evaluated my functional capacity.  Today he reminded me.  My timeline will help fill out his evaluation.

My timeline from my journals.  I have five years.   In them I discuss all my experiences.  Once I realized.

Their value.

Journaling keeps me sane.  I have found.  It works best if I pour my soul.  Lavishly, on the page.

And, that’s what I did.  Starting before it ever occurred to me.  Maybe I should discuss what I notice with my doctor?  The notion was vague, that the state of ship was amiss.

They cover everything from my thoughts on life and death, to the detail of each day playing out.  The ones worth remembering.

When I started using my cane.  How I thought.  Still.  That it wouldn’t get too bad.

Too soon.  It got worse.  And I discussed everything, from why I plopped onto the couch and fell asleep, right after work, to the pain that woke me in the middle of the night.  What else to do when I can’t sleep, but write?

And these journals also describe the sick days I took.  They agree with my former employer’s records.  How I never took many sick days until the last two years.  And how they grew in frequency.  And why.

I also have to write a cover letter for the evaluation report.  To the bureaucrats of the insurancy.  I want to make myself perfectly clear.

Don’t contest this any further.  You will lose.  You have no valid arguments regarding my case.

That’s essentially what it is.  Right?  Will my case stand up in a court of law?  That’s gotta be how they evaluate each one.  If we drop him, with the evidence we have seen so far, will the lawyers win?

In a suit?

So, my cover-letter needs to detail all of the evidence I have.  Just to be perfectly clear.  They will not!

It was the insight that allowed me to stop worrying about the situation.  My weakness is the strength of my case.

I need to spell it out, in my own unique way.  Because I am not merely providing the insurancy my evidence.  I am telling them how to see it.  Without ever stating my intentions directly.

I want the power of language.  Spoken.  Honestly to paint.  A picture in their minds.

I want them to see it.  From my position, they lose.

In a court of law, they have no case.  They will see it.

When I crush their collective will.

This, I can tell you. It’s true.

 

It is difficult to determine.

Anymore.  Whether.

The things I think are true.

It probably has something.

To do with age, I see my grandmother.

In me.  Right now.   She walks, unsteadily.

With a cane, the folds of skin.

That once contained a plump woman.

Shaking.  With each step.

Around the arm.  Holding her stick.

It also might have something to do with my muscular dystrophy.

I have read that this form messes with the executive.

 Function.  Of the mind.

That seems to be my experience.

Oh, Word Location, you bedevil me.

But, it definitely seems.

Due to the many times.

In life, I have had to shift my thinking.

To which, of the many minds I have been?

Does this line belong?

I know I once believed this.

But, was that an illusion?

2014-01-23

A couple weeks ago I mentioned my problems with an insurance company.  This is the latest on the story.

I previously posted twice about the matter.  Here is the first.  And the second.

I rely on my disability policy from my last place of work.  I won’t name the insurance company, yet.  But, I will if it gets ugly.

They sent me a letter, two days before Christmas, telling me to go back to work.

You lazy bum!  I kept thinking the letter contained those exact words, as I read it again and again.

Yes.  I took it personal.  At first.  But, then, as I researched, I began to see.

Disability fraud is rampant.

For example.  In a couple counties bordering Kentucky and West Virginia, as much as 15% of the population receives some form of disability.  One lawyer handles most of the cases.  At 25%, this guy must be very rich, even after paying off a judge and some doctors.

My insurance company needed to know that I am not one of ‘them’.  So, as they paid my short-term disability claim, they also demanded a physical evaluation by my doctor.

But, my neurologist wouldn’t help me.  As a policy, he doesn’t provide help with disability claims.  His secretary was adamant.

I have heard hospitals and clinics commonly refuse to help with claims.  They must think it is outside the realm of medicine.  So I had to take my records back to my primary-care physician.

She had not seen me in almost two years.  I remember her smile as she asked, “What’s new?”

“Well, I have muscular dystrophy.  Here are my records from Mayo Clinic.  Will you help me?”

I saw her at least three times over the summer, as my insurance company kept hounding us.  They wanted more evidence.  Phone calls and letters.  Follow-up exams and forms.  I can see why some medical institutions won’t waste their time.

Evidently, they were never satisfied.  They were just biding their time until they could drop me.

We don’t believe you.  Go back to work.

I consulted with an attorney.  He was friendly and sympathetic.  Then we discussed fees.  He wanted 25% of the lifetime settlement!

I kept thinking, This is all I have left to survive on.  Why do you get 25%?  It’s a straightforward case.

I asked him how he thought his fee was moral.  He never answered directly.  Instead, he told me what other lawyers charge.

But, after some conversations with the insurance company, I learned what they wanted.

So, this past Monday I paid to have a functional capacity evaluation.

A functional capacity evaluation is typically performed by a physical trainer with special certifications.  A subject is put through a battery of physical examinations, as well as tests designed to simulate the type of work performed.  The evaluator summarizes his findings in an objective, legal-medical dialect of English.

In my case, there was an interview, and a review of medical records.  Followed by strength and agility exercises.  He pushed me to the point of failure, so he could to accurately describe what he was seeing.  He also took lots of photos.  As he escorted me out, afterwards, he told me what he saw, in the dialect spoken by insurance bureaucrats.

I try to see insurance professionals as people.  But, I had no sympathy for them on Monday.  By the end of the exam, I was weak and shaking.

About six hours after it began, I left for home.  Muscle spasms left me too tired to do anything.  I just tried to keep myself awake until bedtime.

Tuesday, I was still in too much pain.  But, yesterday, I started writing.  Today, I have enough energy for editing, but not much else.

I don’t, yet, know the final cost.  I will get the bill before I receive the report.  It will be somewhere between $1200 and $1600 for everything.

And, when I heard that, I thought, sure.  If that’s the cost for a report that will hold up in a court of law,  I will pay.

It’s also more palatable than what a lawyer would leave me to let me live on, in exchange for his services.

So I gladly antied-up for Monday’s torture.  I can afford the cost, both financial and physical.  And, after a week I can forget about it.

I made the decision a couple days after my second post on this matter.  And I spent the remaining time, until Monday, blissfully writing.  It was definitely worth it.

I enjoyed each productive day.  Essentially, I feel like I bought myself a two-week writing vacation.

A worry-free mind is priceless.  Especially when it is affordable.

I’m hoping this will be enough.  Common sense tells me it will be.

2014-01-14

A beautiful day in Tempe.

Desert sky.

Winter’s bright blue glare.

An easily love affair.

I will now observe a moment of silence. 

Shorts and a sweatshirt.  

A mid-January,  Arizona,  fortune.

...

I’m feeling better, too.

Rebound!

I haven’t published anything in over a week, although, I have been writing every day.

The effects of my MD are inversely related to my ability to think and operate lucidly.

On my bad days, I write.  But, personal therapy is not for sharing.

I write because I know.  I will feel better, again, soon.

And because yesterday’s experience will help me navigate today.

The benefit of daily of journaling is the mindful comparison of this effort to my previous.

And of this effort to my best.

What went well for me today?  What did not?

What did I do to contributed to the result?  And, what did I do to undermine myself?

Were my behaviors conducive to my goals?  Or was I a destructive influence on my own audition?

And, what lessons can I categorize into a general understanding?

An approach to life.

Going forward — should I shift my stance?

My biggest growth as a writer comes from my journal.  It is the playing field where I hone my craft.

As a child I spent many afternoons hitting pitches and throwing and catching balls.

I never thought of it as practice.  I was playing and improving.  They are one and the same in the presence of mind.

It’s a biologically programmed behavior.  Boys play without even realizing, someday soon, success might win the attention of a girl.

But, we don’t play because we want to be noticed.

And, when it’s not fun I am noticed for the wrong reasons.

Now I write, because swinging a bat while remaining on my feet is too difficult.

But.  Also.

Writing is fun.

However.

Fun, for me, is learning about myself, and preparing for success on a given day.

Because.

Success is not hit-or-miss.  Success comes from aiming, followed by a hit or a miss.

Then stepping back.

And assessing.

When I learned team sports, the coaches would always have us stretch and warm-up before practice.

But, on my own I learned that stretching was typically easier after the workout, with muscles already limber.  And the benefit of the stretch would last longer.  Typically deep into the following day.

I didn’t notice then that I would also use the stretching to meditate.

On what I did, and how I felt.  I was judging, during my cool-down, how I performed.

What went well, and what surprised me, if anything?

Now I am an older man.  And I realize the mental benefits of assessing each performance, from day-to-day, are better than the physical.

I would rather write badly today than not write at all.  I know that tomorrow will probably be better.

And if I do write badly, but identify a cause, I increase the probability.

Tomorrow will be better.

Because I am changing my game-plan as I speak, to handle better handle the contingencies and nuances of life.

I’m no good at that is the mindset of child.

I can get better at this is the mindset of an adult.

And my journal is where I observe myself growing.

2014-01-06

=== 6:48 PM ===

XB

One of those days.  I wanted to call Windy Loo, my case manager, today.  Too tired.  I woke up and had a short morning before falling asleep for several hours on the couch.  I woke again this afternoon with pain coming on.

Funny, too, because yesterday I was beginning to notice how good my energy had been the past few days.  Enough energy to be planning my fight with The Demons of Insurance Underworld.

Pinch me, said my cliche.

I finally left the house sometime after 5 PM.  I first went to Harvest of Tempe for some new herb.  I bought two eighths.  One of Black Label Kush, and the other the ‘Platinum’ TrainWreck.

Then I went to Cheba Hut for a meal.  The lunch I never prepared, much less ate.  The dinner I won’t need to revisit later.  One of those days.

And now I’m in the mood to write.   Not sure if I’m journalling, or working up legal correspondence, or something for the blog or the book.

And, I’m thinking.  If I tell the insurance company about the five years of journals backing my case and my claims, are they going to want to see these things?

I’ll have to practice telling them to fuck off.  Calmly.  Confidently.

“Fuck off.  Are you going to honor the contract I have with you?  Or, do you want to be sued?  Those are your options.  You don’t get a look at my journals unless I have to sue you.”

There was a song playing while I ate my Humbolt and chips at Cheba Hut.  I asked the kids behind the counter.  Who is this?  Sounds like Bob Marley.  But, it can’t be.  This tune is contemporary.

Turns out it was Hey Baby, by Stephen Marley.  I think I may make that a CD purchase.  Do I purchase the CD now, confident I can win this case before my savings run out?  Or, do I hedge?

It’s true that everything contributes to the total sum of my expenses, but I don’t think I spend much on anything any more.  Food.  Periodic restocking of the herb stash.  Like today.  First time in a couple months.  The last purchase was November new, or the very tip of October’s tail.

I will look into the CD a bit more.  Listen first, to the song, again.  I’ll order it if I am confident it will keep.  Musical exploration helps me center myself.

Then, I’ll circle back to my case.  When I remind myself that my journals describe all the visits to doctors and hospitals to get an accurate diagnosis, and all of my sick days as I found myself able to do less and less, and the quality of my life the last few months of work, I have to think the evidence is golden.

Fear can be a bitch, though.  Why am I susceptible to fear today?  It seems related to my physical state.  Today I’m weak and in pain.  And fear of a legal wrestling match must be associated somehow with that.  Maybe one triggers the other?  Or, maybe they are similar in biological origin?

Or, perhaps they are mental.  Maybe being physically weak allows fear to take over.  If I were a small kid, I would certainly feel vulnerable facing a bully.  And, even though my weakness now is the strength of my case with the insurance company, it significantly subtracts from my motivation to pursue this.

But, I don’t have a choice.  I know I need to get on it.  First thing in the morning.  No excuses.

Today, though, I didn’t need an excuse until I woke this afternoon.  Exhausted.

And, one last thing.  It used to be when I journaled I felt comfortable during my introspection.  My thoughts are my own, I used to think.

Now, I just re-read today’s writing.  And my mental legal counsel saw the line, Not sure if I’m journalling, or working up legal correspondence, or something for the blog or the book.

Here is my legal disclaimer.  Those are my ambitions.  Those are not all the things I do each day.  Those are my choices.  How will I spend my writing today?  I only have enough energy for an hour or two.  It has to be worth my while.

And now, a message for the lawyers from the strength of my case.  If all I am able to write each day is an hour or two, how exactly am I supposed to go back to full-time work? 

Idiots.