Connecting the dots

                Every now and then, it comes to light that the clearest picture of reality comes straight from the horse’s mouth.  If only Mr. Ed, the horse, could talk!  Then we would know more clearly what is going on.  It actually happened this way in the life of an eight year old, in spite of his dealing with authorities like his parents and many worldly experts, all of whom know what is best for him.  This is that story.


              The Pistol, as he is known to his grandpa, is shown in the clown suit above keeping an eye on the grim reaper.  Born two months prematurely, he overcame his youth quickly, but not without a struggle against the many clearly present physical imperfections that accompanied his first eight years.  He brought with him a train load of baggage in the form of anomalies, all of which were inborn and second nature to him, but firsts for most of the responsible adults and experts who provide him guidance.

The clearly evident aberrations, known in medical circles as disease, included premature birth, Beckwith-Wiedemann syndrome and associated anomalies, bilateral hernias corrected surgically, visual strabismus corrected surgically, liver overgrowth on the right side, and an assortment of “doesn’t look quite right” prognostications planted on his person by a host of spectators looking in from the outside. In point of fact, it is only the Pistol who experiences his world through his own looking glass. The correspondence between his view of the world and outsiders’ views of this same world may have come into clear focus only within the past three days.  That is three Pistol days within a lifespan of 3,000 days.

On day 2845 the Pistol came to his mama stating that he did not feel good.  Within moments he had a grand mal seizure, losing consciousness and putting his mama into emergency mode.  After coming around he remained in a drunken stupor until after he was administered oxygen by the emergency ambulance driver.    His emergency room visit suggested that everything appeared to return to normal for a little boy.

A few weeks later, he was admitted for 48 hours of continuous brain monitoring through electrodes planted all over his head.  Throughout this visit, he was entertained by his grandma, who had nothing better to do than make his hospital stay as enjoyable as possible.  A few days later he arrived with his family at grandma and grandpa’s place with super glue still adhering to patches on his head.  Grandma worked on removing these little patches until his scalp was nearly raw.

The diagnostic evidence was indisputable, subject to interpretation, of course.  There was clear evidence of aberrant brain wave patterns in one hemisphere.  Specific medication was discussed and prescribed, complete with a recommended therapeutic dosage of 600mg per day.  Because of known side effects, the daily dosage was to be achieved in four successive levels of 150mg, 300mg, 450mg and finally 600mg.

Considerable family discussion followed regarding the appropriateness and effectiveness of medicating the condition.  It is only when confronting actual demons that the full scope of consequences becomes real and personal.  As the Pistol had only one known seizure, and its cause was not determined, the question is whether a transitory blow to the head, possibly administered by his little brother, could have produced this one problem, and that it might never happen again.  Why medicate at all given this picture?

An entire population of activists currently berates the overmedication of everything, particularly children.  This overmedication is often condemned on the one hand by those with an intoxicating drink in the other.  Go figure!  At the same time, it is a serious enough long term problem to ponder at length.

As chance would have it, the parents were leaning toward waiting to administer the medication until more could be learned.  A discussion with a friendly pharmacist became the determining factor.  She advises mama that the medication prescribed, from her experience, is relatively mild, and has few reported side effects.  Armed with increased confidence, the medication was purchased, and the recommended initial dosage was started.

On the third day, prior to administering the third pill, the following conversation is reported.

“Mama, how long do I have to take this medication?” asked the Pistol.

“Well, I think we should take it for at least three years,” mama replied cautiously, worried that he might show some reluctance to taking the pills at all.

“I want to take it for the rest of my life,” was his immediate response.

This short conversation, between an eight year old and his mother, is both startling and extraordinary.  It is clear that something has happened in the Pistol’s first two days on the medication that is life altering.  As a result, mama is encouraged to find out exactly what is going on so early on the third day with a quarter dose of the medication that has made such a difference.

Grandpa’s speculation is as follows, based upon several years of experience with individuals with seizure disorders.  From the context of The Man Who Mistook His Wife for a Hat, a collection of perceptions based upon some extraordinary results of neurological anomalies, very little is clearly known about the internal experiences of an individual with several known neurological problems.  In the case of seizures, it is often assumed that an individual possesses a single form of the disorder.  Yet it is known that specific syndromes, in fact, are clusters of disorders, and only one may be clearly manifest, while the others are apparent, if at all, only to the individual.

This is particularly the case with persons with known absence seizures.  The period of absence may be of such limited duration that it is not perceptible to others looking in from the outside.  It may also not be perceived by the individual, who experiences nothing at all during these absences, as though sleeping while awake.

At the same time, these periods of absence, when cumulated over hours, days or years, can produce missing information at critical periods of time.  It becomes a developmental disorder, and it goes undiagnosed for many of its sufferers.

Unfortunately, when it is not observed by others, there is some tendency, by others, to assert that it does not exist.  In fact, the only individual capable of confirming an absence may be the person with the experience.  One client was aware of his absence seizures, and apologized by saying “sorry” each time he would return to an ongoing conversation, but he had no recollection of what he had missed during each absence that visibly lasted four or five seconds.  Like pain, it is subjective, and may not be directly observable, but must always be inferred.

In the case of the Pistol, grandpa says that he is one very unique, and very bright little boy.  His most recent third day on medication suggests that he has been accommodating regular, and possibly frequent periods of absence, and has been expected to report back to the external world exactly the way others see it.  Grandpa says that the Pistol has seen the real world as others see it for only three days, the last three.  He has seen the picture for the first time by connecting all the dots.  And worst, or best of all, we on the outside will never, ever really know what is actually happening on the inside.  Like the shadow, only the Pistol knows!

The problem now is worrying about whether to go up to the next dosage level of the medication.  When you are sitting on a winner, why would you want to switch horses.  Fortunately, grandpa does not have to make this decision, but he knows that loving parents will provide all that is needed.

But seriously consider the source, the horse; in this case, the Pistol.  Only he can connect the dots.  And he did, possibly, for the first time.  Three days and counting!

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