iPad Motion Sickness Syndrome

I have friends who’ve achieved and accomplished their whole lives.

Here, on the 11th of April, while I look out the window at the jungle of a yard that keeps my house cool in the summer, my friends’ stories stand out in my thoughts.

Meanwhile, my sister and I (with help from my wife and mother) assemble a set of notes and medical reports to give to medical experts to help understand where we can go to get a firm (or as close to firm) diagnosis for my father’s medical predicament(s).

The tree leaves and limbs do what they do best when breezes pass over the undergrowth, grabbing my attention as joggers and walkers avoid speeding cars on the road ahead.

Disco light dances across the window screen and onto the end table holding up a power strip, grow lamp, computer monitor, scented oil lamp, 3Com modem cable, incense bowl, light timer and a book a friend gave me titled “It’s a Young World After All.”

I am open to hearing and reading about alternative views concerning the history of our species.

I am willing to accept my friends’ opinions about their achievements and accomplishments.

I do not fret about belief systems in the majority or the minority and how they may or may not sway the thought sets of people both young and old like the wind shapes the forest around me.

There aren’t as many seedpods on the redbud outside the window as there were last year.

There are thousands of people who buy handguns and rifles every year and will never use them, storing them for a collection or trading them for something that looks more useful than the ones they first bought.

It is part of our global cultural interaction that drives some to buy weapons for self-protection on an active, daily basis.

There are those who travel great distances to provide basic medical care and deliver simple foodstuff in order to raise the standard of living in regions of the world not well-connected to local/regional caring social networks.

And then there are the few who seek membership in the Galactic Exploration Society.

In this moment, when the actions of others — friends, family, acquaintances, and instantly formed/lost friendships — find spaces in my thoughts, I look around the room of my study/meditation zone and wonder how/if happiness is contagious.

Some days I pursue the wrong activities.

My father is a man of action more than contemplation.

I have always been more of a man of contemplation rather than action.

From my father’s U.S. Army days in Germany during the Cold War to his most recent days of teaching students at ETSU as an adjunct professor, he found happiness in social engagement.

I find happiness in analysing interesting data more than in stressing pre-arthritic joints while swinging a scythe.

Both of us are products of the influences of ancestors, peers, descendants, and commercial interests.

My father grew up to put country first.

I grew up to put planetary exploration first.

The influences upon him influenced me.

The same goes for the achievements and accomplishments of my friends.

The Sun heats the planet and air pressure changes create wind which passes through the forest, influencing my thoughts and the thoughts of people passing in front of my yard.

Staring at an iPad, my head bent down while my finger slides news articles across the screen, like the scenes around me flashing past when I’d hold on to the rails of a merry-go-round during recess in elementary school, causes motion sickness.

While telling the tale of our species from a long perspective, how do I incorporate the images above into one where we’re looking at our achievements and accomplishments that’ve put people on the Moon and cybernetic explorers on millennial-long journeys?

It’s not the brain of Stephen Hawking that I want to preserve — it’s his thought patterns that are interwoven with the society around him I want to perpetuate, ensuring that they continue to evolve unabated by the physical presence of a brain or a body bound to a wheelchair.

My father, however, is a different story.  His physical AND mental presence are both key parts of what he means to me and my desire to push our species beyond primal tendencies to create dystopian nightmares where survivalist weapon hoarding is considered normal behaviour.

It’s also more than that but I’ve allowed myself to become a mortal human, subject to daily interruptions of bigger dreams, distracted from the plan set in motion by a group of people I’ve spun into a literary device called the Committee to capture the attention of those prone to primal thought patterns so that we can achieve a goal 13,904 days from now with all 7+ billion of us fully involved as sets of states of energy in the visible part of the universe with which we’re most familiar.

Are hopes and dreams intimately tied to happiness?

Perhaps.

How much does the passing of a single redbud leaf in front of the window have to do with dust devils on Mars?

Do you understand the immense distance between our planet and any celestial body with potential compatible communicable sets of states of energy that would interest us more than as laboratory experiments?

A lesson I learned one summer during sales training week for Southwestern Book Company decades ago still applies today:

The story concerns twin boys of five or six. Worried that the boys had developed extreme personalities — one was a total pessimist, the other a total optimist — their parents took them to a psychiatrist.

First the psychiatrist treated the pessimist. Trying to brighten his outlook, the psychiatrist took him to a room piled to the ceiling with brand-new toys. But instead of yelping with delight, the little boy burst into tears. “What’s the matter?” the psychiatrist asked, baffled. “Don’t you want to play with any of the toys?” “Yes,” the little boy bawled, “but if I did I’d only break them.”

Next the psychiatrist treated the optimist. Trying to dampen his outlook, the psychiatrist took him to a room piled to the ceiling with horse manure. But instead of wrinkling his nose in disgust, the optimist emitted just the yelp of delight the psychiatrist had been hoping to hear from his brother, the pessimist. Then he clambered to the top of the pile, dropped to his knees, and began gleefully digging out scoop after scoop with his bare hands. “What do you think you’re doing?” the psychiatrist asked, just as baffled by the optimist as he had been by the pessimist. “With all this manure,” the little boy replied, beaming, “there must be a pony in here somewhere!”

That, my friends, is why we get up in the morning, making miracles every day.  No matter how much we may be distracted by the mundane, or even happy being perfectly anonymous, there’s always a chance that pony will appear out of nowhere and change our perspective.

In fact, I guarantee it will.

Look at me.  I never thought a tablet PC could cause motion sickness until today, which has completely changed my desire to write the Next Great App.

A Plate of Leftover Food is My Canvas

As as experiment, make a series of appointments with medical professionals, describing a part of your condition and medical history at every appointment.

Then, observe the effect your partial medical history oratory has on the attempt of a medical diagnosis.

Keep in your thoughts the fact that your complete medical record set is available to each professional in turn.

Of course, specialists will tend to focus on your malady in reference to their specialty.

Can you see a pattern emerge?

Will you receive a “true” diagnosis based on the state-of-the-art in medical practice today?

Let’s say, for a hypothetical example, that you have a throat-clearing problem which recently developed into the lack of ability to find common words in your vocabulary and then devolved into the inability to speak or swallow, which may or may not have anything to do with the “thrush” or tongue infection you can display easily.

At the same time, your garden variety of medical experts has prescribed a handful of medication to consume on a daily basis, some of the medicines requiring close monitoring (every two to three days) but your doctors only see you every two to three weeks.  In addition, some of the medicines have been shown to have moderate side effects or known contraindications for not prescribing together in the first place.

On top of all that, one or two members of your family have experienced episodes of severe depression but up into your late 70s, you have not (yet).

You end up not being able to eat for several days after weeks of eating very little, losing a lot of weight and getting admitted to a hospital emergency room due to malnutrition and dehydration.

After a few days, a PEG tube is put in your stomach and passed through your abdomen wall for nourishment.

Therefore, a few of the medical professionals think you may have had:

  1. a stroke,
  2. myasthenia gravis,
  3. fungal infection,
  4. negative drug interaction response,
  5. ALS bulbar option, sudden onset,
  6. geriatric depression,
  7. dementia,
  8. some mix of all of the above, and/or
  9. to be determined.

I know there’s a comedy skit just waiting…no, begging to be written about the above situation but I can’t imagine it because my face is up against the bark of a tree and I can’t see the surrounding forest shading me from the bright light shining on the world’s greatest medical calamity sketch.

I can use testing to eliminate the first two options above.  For some reason, the third option isn’t going away.  The remaining options are testable to some extent.  The fifth is a death sentence no doctor wants to give.

I can solve the perceived problem of world hunger (provide a Green Revolution to many parts of the world and accept that no distribution system will prevent the death of millions in some parts of the world due to political instability and wealth inequality).

I can send Earth-based lifeforms to other celestial bodies.

Yet, here in the landmark year of 2012, I can’t get a panel of medical professionals to agree to a diagnosis for my father’s current, finite set of bodily conditions.

If I hear yet another specialist say, “Well, I can’t determine your father’s condition because it requires a different specialist,” I think I’ll toss the whole medical profession into the category of high-falutin’ quackery and call it a day.

Reminds me of the recurring thought of mine that our transportation devices long ago reached their point of maximum usefulness and have succumbed to the concept of feature creep that dooms every product to creative oblivion.

The guru in me told me a story (the previous phrase is a literary device so just go with it)…

Long ago, your ancestors looked at the raging storms, the swelling seas, the spewing volcanoes and said, “This is how the gods communicate with us.  We must figure out a way to respond.”

Not so long ago, your ancestors figured out how to send message via smoke signals and said, “The gods created us.  Thus, by learning to communicate via smoke signals to each other, it must be the same way that we can communicate with the gods.”

Recently, your ancestors developed “invisible” radio signal communication technology and said, “Gods are inventions of ours.  They were alien to our less sophisticated level of understanding the universe.  Theoretically, aliens exist, maybe in godlike status to our modern-day level of understanding; if they exist nearby, they must have evolved to our point of advanced civilisation at one time in their evolution; therefore, let’s use radio signals to send messages to aliens and listen for them on our radiowave receivers, hoping that our civilisations are in similar stages of evolution.”

Today, your contemporaries not only use radiowave transceivers but also lasers to communicate across the solar system and say, repeating your ancestors’ way of thinking, “If our galaxy is teeming with advanced technological life, it has lasers crisscrossing it—tens of thousands, millions of them—and we should be able to pick up some spillover. Also, some aliens are going to try to communicate with us. Maybe they are literally pointing their lasers at us and we just aren’t looking.”

That just as easily explains the way medical science looks to me at a 1000-year perspective from now.  We have not mastered the connections between subatomic, atomic, molecular and life science systems, still basing our theories on unproved/misguided theories of the past.

Time to crawl back into my cave and contemplate the formation of limestone deposits, watching the life of our planet change one…slow…drop…at…a…time.

13,906 days to go…sigh…

Laughter in Medicine

My father has always been a serious fellow around me but he has had his funny moments, too.

When I was in secondary school, my father chaperoned many an event, earning himself the nickname “Cool Dad.”

So, while I mentally compose funny bone ticklers to flesh out here in later blog entries, today’s info-stuffed minimal verbosity includes two links for those seeking silly respites despite serious riffs on ALS-related syndromes/diseases:

Lost in Allemagne

Whatever it may be, it is what it is.  I no longer have a mind, or semilogical thought set.

Where is the guy who can spin off cantankerous cacophonies of kaka like it’s nobody’s business?

A new list of names to add to the list of names of people to thank for being people.

Can I be too tired right now to name them?

Where is the amateur professional amateur when I need him to stand in my stead and mount the steed like an Android tablet that suddenly displays a need to find the mount drive named something like /mnt/, which amounts to mountains of rubble and gibberish rubbish to the noncomputersavvy.  Savvy?

Of course not.

My father is dying, dying, dying and I’m past the point of pain, pretending to pretend my father is there in some form of his old capacity while pretending in pretense, past tense, tension (the hyper kind), that he’s like a newborn child all over again, like adopting an autistic child with no clue which clues to the child’s nonclues indicates the child’s needs without pretending.

Is my father clueless or stubborn?  Is he ignoring or is he tired?

He never liked dwelling on discussions about his health, his PRIVATE health, with strangers.

But he loved talking.

Now he grunts, coughing out sounds we interpret as “yes” or “no” to the best of our ability until he indicates we were wrong.

He is weak, getting weaker, never the weakest this week.  Weebles wobble but they don’t fall down.

To have these moments with him in his time of indiscernable thought patterns.

To read much, little or nothing in his eyes, from when he chooses to look back with a blank stare.

Not even a smile.

Is it worth writing about the shriveled hands, the sunken cheeks and hollowed-out eye sockets?

When the family chooses to put in the feeding tube, the PEG line, these are the consequences we get to face.

It is up to me to serve as a warning to the rest of you — resist the temptation.

I don’t want the last memories of my father to be these moments of diminished capacity, well beyond the twilight zone of believability.

I believe I have no choice.

Suffer the insufferable.

Go with the flow.  It’s all relative — many have suffered worst fates with friends and family.

And yet, not so.

Time to revise my living will — there will be no PEG line for me, no stretching my life into wide-eyed stares with no productive, contributory communication to give back.

Let me die in strength.

Let me fight the good fight while I have the capacity to say no.

While I have the fingers to type or, at the very least, the ability to dictate via brain probes.

Something…anything but this.

I am beyond crying.

I am tired of being tired of being tired.

If my thoughts aren’t worth reading, plop me in a wheelchair and push me into the woods.

That’s the joy of having no children.

Let me feed wildlife with my set of states of energy in entropic flux.

Where labels have no meaning to an ecosystem designed to eat the weak and the dying in an effort to convert energy into the ebb and flow of species sets of states of energy in regenerative reproductive mode.

Auf wiedersehen, Vati!

Chemistry… “Live it. Love it. Wear it.”

While the world stares blankly at the U.S. arguments about national “universal” healthcare, I delve into the healthcare provided to one person: my father.

I observe and listen.

I take the advice of medical pros like Dr. Little and delve more deeply into the mixture of medications poured down my father’s throat on the advice and scripts of his doctors.

Drugs like pyridostigmine, prednisone, and paroxetine given all at once.

What if the medications are causing side effects that doctors are treating as symptoms, prescribing more medication to treat the symptomlike side effects that causes more side effects which look like new symptoms, etc.?  A vitreous cycle, wouldn’t you say?

You see where I’m going with, don’t you?

For the sake of keeping this civil, let’s call it “human nature.”

What is that phrase I tend to forget in moments like this…?

To err on the side of caution is good human medicine, to forgive Divine for bad acting is unnatural?

Something like that.

More like to wade Kendrick Creek during one’s spring break is fun, to build a bridge on Gibson Mill Road in summerlike heat is exhausting.

I just hope we can get Dad back before it’s too late.

If any of him is still there…sigh…kinda like USA soccer/futbol, here the next moment, gone in an Olympian tie the next…

“Customer Care – Incident Created”

In this day and age of multiple personality disorder — that is, our combination of official government identifications (driver’s licence, voter ID card, medical ID card, etc.) and online personalities (email address, social media identities (real and/or imagined)), etc.) — do we know who we are when we no longer know who we are?

While we work with medical professionals in private practice and public hospitals (a thanks to the folks at Holston Valley Medican Center and HealthSouth Rehab Hospital) to get my father on a track where he can have an acceptable, if not good/great, quality of life considering his conditions, my family works in the background to sort out my father’s multiple personalities.

For instance, my father kept Post-It notes of some of the usernames and passwords associated with his online personalities but not all of them, especially the most important ones.

His official government identification cards are up-to-date and don’t need fixin’, as we say around here.

However, working through the bureaucracy of getting help when help is needed most — a medical emergency — is just short of a nightmare for those of us able to sort through the payment options and insurance coverages that are written to accommodate as many diagnoses as are currently available in legible written form by the medical profession.

Woe be to those whose family members have symptoms that can’t readily be grouped into an official syndrome or disease.

I could wax and wane through many a lighted Moon cycle on the current state of the modern medical scientific community but suffice it to say that any view 1000 years hence marks this time, like all looks back into history, as rather barbaric, archaic and borderline misinformed.

Unfortunately, I don’t have a fast-forward button to take my father into a future where his conditions are rather curable by enlightened practitioners.

I have to deal with the training and knowledge at hand, such that it is.

Thank goodness, compassion, care and comfort are rather universal — human touch, in other words, is good for most of us, in one form or another.

My father responds well to communication with fellow members of his gender.  Guy-to-guy gatherings are his thing and he perks up when men ask him to perform manly tasks.

He does not want to be babied or treated weakly by women.

Otherwise, all is well that progresses well.

Me, I don’t mind attention by females in medical professional roles but I’ve noticed my father responds best when treated by men — doctors, nurses, therapists and specialists.

Probably a generational thing as well as social training — I am a child of the 1960s/1970s whereas my father is a child of the pre/during-WWII era, with other subcultural nuances thrown in for good measure.

Something the medical community should take into consideration when vocalising concerns about getting more people involved in seeking certification for jobs/roles in the medical field.

Healing is not just application of chemical treatments — treating people like desired monoculture grass lawns — it’s also understanding where the patient is coming from and wants to be treated.

The online world is no different.  How do we create a system so that when a person’s ability to recall important online identity tags diminishes, family members can step in and help without having to figure out the unique character set combinations the person’s brain created to protect online personalities, especially where bill payment and medical information access is critical to keeping the person healthy and out of financial trouble?

People to thank with more to follow: Benjamin, Amanda, Tina, Martha, Mary, Sue, Jennifer, Joyce, Glenda, Brenda…

The Corner of Sadness and Lonely

Imagine, for a moment, my fist held up high, arm bent at the elbow and slapping the palm of my other hand on the biceps of the upheld arm.

That is my message to the .pl-based spammers.

I will not go away quietly!

= = = = =

On another note, I am not my blog.

In a world of analysing subcultural trends to figure out how and what will be said by whom when, there is the other side of life.

Me, the little five or ten year young boy, staring wide-eyed at the world, wondering what I’m supposed to do in this adult body, with grownup decisions to make.

…sigh…

Be a man, right?  Suck it up.  Every family faces tough decisions and keep them from the light of the public eye.

But I am also a writer, a journalist, at heart, if not by trade, a hobby craftsman putting these symbols together for personal and perhaps species-level entertainment.

Maybe a little enlightenment, too.

I haven’t fully recovered from the loss of my dear mother in-law and now this?

Live and learn.

Pain goes away eventually, one way or another.

The lesson today is family trumps politics every time.

Details will wait another day to be pulled out of the emotional wreck I am at this moment and scratched onto this virtual slate.

Quiet and solitude will suffice.  Peace is a word, a blurry image barely discernable.

Sitting here, perplexed, not quite dejected, on the corner of Sadness and Lonely, pushing aside pride and other feelings that a person like me is supposed to personify in the image of a MAN.

Willing to cry…today, that is enough.  Words from a rational viewpoint will have to wait.

…today?…is “today” a real world?  I don’t know.  It doesn’t sound right.  Where’s my hardback edition of Encyclopedia Britannica to resolve the matter logically?