Life

Be nice to others, for we all carry heavy burdens.

Pleasures

Geeky

Argentine Tango

Introduced in 2003, on July 1st, I instantly fell in love with Argentine Tango. Coupled with the fact that Portland has an absolutely amazing tango community, which is unique in its structure; unlike nearly any larger or smaller Argentine Tango community throughout the world, we've never fractured, nor broadly supported competition amongst varying styles and instructors. The result is a reasonably-sized, supportive, and cooperative community that enables us all to simply enjoy the dance for what it is…

I've been dancing for a little over five years now, and look forward to the days when I can again dedicate even more of my personal time towards this passion.

Why Tango?

A few years ago, after the initial shock to family and friends (Tango was my first “real” socially-oriented venture in years, and I've never outwardly shown a liking to dancing in past lives), many asked…“Why tango?”

The answer came relatively quickly:

I do terrible in social situations. Largely because my hearing loss makes it exhaustingly difficult to track group conversations, and because I allowed this hearing loss to hinder social developments during my later child & teen years. Coupled with a rapidly-declining hearing loss, and the stubbornness that comes with age, I find myself in a conundrum that significantly hinders progress…despite extensive unrelenting efforts otherwise.

On the other-hand, I can't stand being alone for any length of time; I've been accused of being “…amazingly sociable…” by many close and causal friends. Tango allows me to enter a social environment, where traditional verbal group communication skills have little bearing. Instead, you spend nearly your entire evening tasking your creative mind; communicating & interpreting varied styles of music, while intensely focused on not only your partner, but also those surrounding you on the dance floor.

Cycling

After taking a job in the downtown Portland area, I started commuting via bus, then it became bus + MAX… After quickly tiring of the nutcase-of-the-week, I finally purchased a recumbent bike that I'd been lusting over for the past decade. Since then, I've proceeded to sell that bike, only to purchase another “high racer” recumbent. My furthest solo ride to date was just inches over 300 miles…next summer there's a 600 mile solo route with my name on it :-)

Randonneuring

Someone asked me the other day; “Why do you ride your bike such insane distances?” aka: Randonneuring

The answer came easier than I expected:

To be alone…truly alone and untethered from anyone and anything. Watching the world's drama, chaos and myriad distractions simply disappear; there's no feeling like it. As your tires hum a calming melody to the road, your body demands total attention. Your day-to-day mind becomes reclusive.

You begin watching the weather, the roads, and the world passing slowly around you. Once you're out amongst it all, you realize that no technology or chemical will ultimately bring you home. The battle of a long-distance ride begins and ends not with energy drinks, special diets, good tires, or a comfortable seat…the battle ends when you've conquered yourself. Only then, somewhere within this solitary journey, there emerges a sense of calm determination and prideful accomplishment that transcends expression.

Travel

I love to travel, but hate doing it alone…details to follow… 8-)

Struggles

Communication

We all struggle to communicate, some more than others :-)

Hearing Loss & Deafness

Summary

I have a profound congenital hearing loss (caused by Mondini Dysplasia), which is both a sensorineural and conductive loss. In laymans terms, I was born with a level of hearing commonly referred to as a mild-to-moderate loss…over the years, the condition has shifted towards the “legal” definition of “deaf”. I compensate for this “loss” with my general attitude towards life, and some really powerful hearing aids. The end result, is that I'm highly functional in the “hearing world”; dabbling with languages such as Croatian, German, and Lojban, holding jobs which include telephone support, using my own cell phone often, and just holding my own in regular verbal dialogs.

Gadgets

I love tracking new technologies, especially when it comes to human sensory augmentation; hearing aids, gadget reviews, cochlear implant research, hearing protection tools, etc…

Mondini Dysplasia

Known as Mondini Dysplasia, it's the congenital cause behind what's now a near-deaf hearing loss. My condition is both sensorineural and conductive, though, see why I dont allow it to define me.

A sensorineural hearing loss profoundly differs from the conductive loss experienced while fighting head colds. A sensorineural loss significantly impacts communications, as it involves a reduction in the ability to hear certain frequency ranges; which reduces speech comprehension accuracy, and extinguishes the ability to perceive related sounds. In-effect, a sensorineural hearing loss hinders the quality, not quantity, of a sound; a conductive loss hinders the quantity.

Here's an excellent sensorineural hearing loss illustration.

Coping

To some, a hearing loss becomes a disability, a barrier, or an excuse. As someone with a severe hearing loss, I constantly ask why?

Asking the average person if they'd rather lose their hearing or sight; many often choose sight. Why?

They fear what they believe a hearing loss brings:

  • A diminished knowledge of their surroundings.
  • The loss of a baby's cry…or even a giggle.
  • A laughing child.
  • The loss of music.
  • The roar of a waterfall.
  • The gentle startling silence of a white-capped mountain stream.

Trust me, I'm very close to this fear.

On the other hand:

  • Wait for a beautiful clear day, go to your favorite mountain summit, take in the sights, and then close your eyes - just for a moment. Do the same with a city skyline. Now, with your eyes close, imagine never knowing, or someday losing, sight of what you'll see as you open your eyes again.
  • Try a weekend backpacking out in the middle of nowhere, with your eyes shut.
  • Elegantly dance a crowded ballroom dance floor, without touching anyone but your partner.
  • Smile back at the smiling baby.
  • Frown at the pouting child.
  • Finish that new book.
  • Bike to the beach.

While I've heard the fear regarding the the loss of music from many, as an avid Tango dancer, and admirer of classical music, I can do nothing but remind them that music is felt as much as it is heard.

What is your fear, and where are you now?

Random Thoughts

I cant even begin to convey how frustrating it is living in the “hearing world” with a profound hearing loss. For nearly fifteen years, my loss remained at a near-constant “moderate” loss; that's essentially what I grew up with - I think I coped pretty darn well, for someone who speaks without noticeable speech impediments, and is happily 13 years into a chosen career that's heavily-dependent on verbal communications. Not only that, having been at it for over 5 years, I've become reasonably-proficient in social Argentine Tango dancing.

Effective late 2006, my loss suddenly shifted near the profound category, and then shifted clear into “profound” in January 2007. While I thought I “understood” a hearing loss then, boy…let me tell you…that's nothing compared to where I stand today. Now I fully understand why some people would prefer blindness over deafness. While I'd still rather hike in silence, than impale myself upon a red-tipped cane as I stumbled off a steep trail, living in the “deaf” category is no cakewalk.

As with most folks, their livelihood depends on regular verbal communications. Before, this required some extra communication effort on my part that was tiring but manageable, but the now-greater effort exhausts me roughly half-way through the day; I just want to go home and shutdown in silence for a while. One boon of mass transit, is that's exactly what one can do while waiting to reach their destination.

With the greater loss, most verbal communications now require the person speaking to me, to repeat occasional phrases during even one-on-one conversations very rarely do I catch what was said the first time around anymore. This is clearly frustrating for some folks, though imagine being on my end! Argh! Take for example, at company get-togethers, it's always a small group, maybe 15 of us at its peak, and we're not that noisy, though I could barely understand what anyone said; usually just nodding my head and pretending. You can just see the frustration and irritation on most folks faces, and how often can you interrupt a group discussion before you get shut out…experience has taught me that most folks will give up and avoid talking to you; something I'm seeing more and more of lately.

What you see struck-out, is effectively my initial-reaction to the shifted hearing loss…as time passes, I'm learning how to profoundly change my approach regarding my hearing loss these days. Aside from my shift in approach, the folks I work with these days are simply amazingabsolutely amazing! I have NEVER had the pleasure of working with such an intelligent and progressive group of people. Since I spend so much time with them, the way my coworkers approach this, has a major positive personal impact.

For one, when I started working for this company, on my first day I was blindsided by the fact that 95% of all dialogs/discussions that don't touch email are also not handled in person, but instead transpire via IRC (internet chat - aka instant messaging). Upon complaining to a friend about this a few days after starting, I stopped mid-sentence, and realized that this very communication method is EXACTLY what I've been trying to encourage my bosses to adapt for well over a decade. Then, I find myself walking straight into what I'd asked for all-along… Such a “simple” means of communication (IRC) eases my life so profoundly, it's equally “self”-serving towards my employer as well; saving thousands of dollars in avoided long-distance phone calls, and by facilitating more efficient (inherently-logged) queries & meeting notes/minutes.

Quantifying a Hearing Loss

The severity of hearing loss is measured by the degree of loudness, as measured in decibels, a sound must attain before being detected by an individual. Hearing loss may be ranked as mild, moderate, severe or profound. It is quite common for someone to have more than one degree of hearing loss (i.e. mild sloping to severe).

Rankings, and their corresponding decibel ranges:

Degree of Loss Child Adult
Mild 20-40dB 25-40dB
Moderate 41-55dB
Moderately Severe 56-70dB
Severe 71-90dB
Profound 90+dB

“Stone Deaf” is typically somewhere beyond 100dB…but even that value is not carved into stone.

Audio Quality

It's interesting to watch these complaints regarding the lack of fidelity in older recordings. I consider myself a decent Tango dancer, yet because of the limitations of my hearing aids, I can only hear the frequency ranges 100Hz through 4,800hz (AM radios do aprox 100Hz-5,000Hz), while most folks with average hearing can hear 20Hz through 20,000hz (ie: high fidelity CD-quality sound). Yet I still manage to enjoy and appreciate whats there, I guess I just dont know what I'm missing…

You know, analyzing this more, there are a number of very telented dancers in the Portland, Seattle, San Francisco, and LA areas whom have approached me and described their hearing losses. I wonder if such a loss allows one to concentrate more on the dance and their partner than fixating on the quality of music.

Of-course I'm not advocating you damage your hearing to “improve your dance”, though the casually observed relationship between the two is very interesting. For those whom want to protect their hearing those nights the DJ seems to be suffering a severe hearing loss of their own :-), there's always Musicians Earplugs.

The human ear is a complex electro-mechanical-hydraulic organ that responds to a band of frequencies usually given as 20 to 20,000 Hz or so.

To address a recent debate:

  • Max. gain 81 dB
  • Max. power output 145 dB SPL
  • Frequency range 100-4800 Hz

Old Scratchings

As we navigate this dance floor called life, various events will attempt to slow us down, or will simply block our path. For those that approach these incidents as mere speedbumps, they will someday reflect upon their lives; looking back, these handicaps will seem minor in comparison to a lifetime of accomplishments.

Enjoy life's offerings; what you have, and who you are, in this very moment. Tomorrow may promise greener pastures, but tomorrow may never come.

The above phrase (which is still being refined) is inspired by my recent tango interest. Looking back over the last 25 years, I've realized that the meaning behind the phrase is the very rule I strive to live my life by; We all have a story to tell…

Medical Coverages

Medical coverage for the hearing impaired is without a doubt, absolutely terrible. My current model of hearing aids cost more than $9,000 for the pair. When those with a hearing loss are often considered underprivileged, a price-tag demanding between 2-4 times someone's monthly gross income, to acquire medical equipment that one simply cannot function without…well, what choice do you have?

In Oregon, The Department of Human Resources Vocational Rehabilitation Division can help the hearing-impaired acquire hearing aids, as long as you can prove you need hearing aids to stay gainfully employed. If you're already working with a hearing aid vendor, they'll be happy to consider that vendor when they seek bids for any equipment you can justify a valid need for.

If you live in the Portland Oregon area, I strongly recommend you speak with the folks at Gresham Hearing Aid Center - in all my years searching for a decent vendor, these folks are by-far the best; they care about their work, they truly value their customers, and they posses critical industry connections & knowledge necessary for solving what can often be very complex situations.

Narcolepsy

My “Big Fat Secret”; something I simply don't often discuss, is an October 2007 medical diagnosis that I'm quite-frankly still coming to terms with. In medical terms, my neurologist refers to it as “unequivocal idiopathic hypersomnolence characterized as excessive daytime sleepiness, as established via diagnostic testing and results of clinical treatments”. Those who lack a medical degree, such as myself, use its far more common name: unequivocal narcolepsy. More-accurately; my health insurance carriers refer to it as diagnosis 347.00 (ICD-9-CM), which just translates to narcolepsy without cataplexy.

Narcolepsy is simply persistent and excessive daytime sleepiness (EDS), even after adequate night time sleep. Someone with untreated narcolepsy is likely to become drowsy, or fall asleep, at inappropriate times and places, and often without warning. The urges to sleep are physically irresistible, and best-analogous to how an average person would function after a few weeks of consistently getting four hours of sleep per night.

Cataplexy is the loss of muscle tone/control in reaction to strong emotional states, and it's how Hollywood often portrays narcolepsy; the sudden collapsing and loss of consciousness. Like “Most Things Hollywood”, that portrayal is offensive and largely inaccurate; I simply don't experience cataplexy.

Cures & Causes

Researchers continue to search for answers on how the “wake” and “sleep” centers of the brain work…so while narcolepsy has been established as a genetic disorder, that's often environmentally triggered between the ages of 15-35, and a recent study found that it's an autoimmune disorder. There are not yet any known cures.

Testing/Diagnosis

Narcolepsy is diagnosed by a polysomnogram (an overnight sleep study) which follows the next day with a multiple sleep latency test (MSLT). The MSLT is done the day following the polysomnogram, and consists of a series of 4 to 6 naps throughout the mid-morning and into the afternoon. The time it takes a patient to fall asleep at each nap is tracked, hence the name “multiple sleep latency.” A normal latency is 10 minutes—if there is a latency of 5 minutes or less it is suggestive of narcolepsy. When REM (rapid eye movement) is recorded within the first few minutes of sleep onset with two of the naps it is also a positive indicator of narcolepsy.

Aside from sleep studies a hypocretin test might be the future new test for narcolepsy. Healthline reports “Recently, patients with narcolepsy have been found to have low levels of hypocretin (a protein made by the brain) in their spinal fluid. More research will determine how useful this test is in diagnosing narcolepsy.”

Treatment

Put-simply, as-of July 1st 2011, I consume over $1,900.00 worth of prescription drugs per month, in the treatment of this condition (though decent medical coverage does help offset a portion of this expense). These treatments keep my narcoleptic tendencies completely at-bay, and enables me to function totally without concern that symptoms would unexpectedly emerge.

To clarify…your eyes are not deceiving you, that's over $63/day in prescription drug costs!

Personal Impact

When left untreated, this genetic disorder can hinder regular contributions in family, social, occupational, or other settings. As the unaffected see this sleepiness as an insult, a rejection, or as evidence for lack of interest. Family members equate pathological sleepiness with their normal experiences of sleepiness, and mistakenly assume that, if the person really wanted to, they could “fight it off”. As a result, family members with only a rudimentary understanding of the disorder often conclude I'm “just not trying hard enough”. In-fact, I still find it extremely difficult to accept that this pathological sleepiness is beyond my own volition; it is simply not something that can be “willed away”…as I've learned first-hand.

To further confuse things, a condition known as “Mood Reactivity” plays a factor; I'll often experience near-total remission of all symptoms during rare unique and/or stimulating circumstances - remaining animated, awake and alert, for extended periods of time, though only so long as the circumstances persists. Such circumstances usually include unusual guests, experiences, or situations. Unfortunately, this trait lends credence to an observer's assertions that my alertness is simply a matter of self control, and that the narcolepsy can be 'willed away'…. It cannot; the normal correlation between interest and wakefulness simply does not hold, and asserting that someone can 'fight off' the urges to sleep are as illogical as concluding nobody ever needs sleep, simply because anyone can fight-off sleep during unique or emergency situations.

Hearing Impact

Food for thought…

When I first started treatment for narcolepsy, I perceived a significant and consistent day-to-day improvement in speech perception. I discussed these side-effects with both my neurologist and the director of clinical audiology at an area medical school; both agreed that there is a distinct coloration between speech/sound processing abilities, and varying levels of fatigue and alertness. The end-result of our discussions, were the realization that both a severe sensorineural hearing loss, and hypersomnolence, can work in tandem to adversely exacerbate symptoms inherent in both conditions.

While a variety of diagnostic exams have ruled them strictly neurological in origin, we established that my narcolepsy symptoms are NOT fatigue-related, and discovered that the result of hearing and speech-processing related fatigue can initiate a cascading effect which ultimately manifests as a disproportionate degree of difficulty understanding speech. In other-words, when hypersomnolence increases, my mind works harder and fatigues faster, which simply reduces cognitive functioning capacity and then further strengthens any hypersomnolence.

One speculation, is since the Paced Auditory Serial Addition Task (PASAT) exam is designed to strain cognitive functions, it could be used as a tool to measure the colerration between hypersomnolence and fatigue. That theory has not yet been fully-studied though.

Transportation

With Narcolepsy am I safe to drive? Put-simply; yes.

The topic of whether or not I do actually drive, is an entirely different discussion though.

Whenever I'm athletically active; cycling, running, and walking, there has never been a manifestation of excessive sleepiness, and therefore nothing requires accommodations under these stimulating circumstances. Though since driving involves nothing but mildly moving one's arms and barely moving a foot, that's where my struggle begins; I'm faced with a choice between consuming potent medications, or simply forgoing the idea of climbing behind the wheel. As my neurologist puts it; “…we've proven that you're [I'm] perfectly safe behind the wheel, as long as you're [I'm] sufficiently medicated…”

For an in-depth discussion of how I handle personal transportation, see below.

Transportation

When factoring in the emergence of a chronic medical condition, a world-wide oil crisis, rising fuel costs, and continuing lifestyle changes and improvements (such as now residing in a downtown condo), I'm finding it increasingly unnecessary to drive. So, while my narcolepsy has not directly-hindered my ability to drive (recently, for nearly 5 hours straight). My emerging multi-facted aversion towards driving means I put less than 1,000 miles on my own car in 2008. To put things into perspective, before the narcolepsy diagnosis forced me to more intimately re-evaluate my participation within America's “car culture”, I averaged roughly 15,000 miles a year, and have owned six automobiles in my lifetime…for a total of around 200,000 miles behind the wheel of my own vehicles, since my 16th birthday.

These days, my primary means of transportation are rides from family & friends, area mass-transit, and a tremendous amount of cycling. So-much, that I self-rationalized the expense and time necessary to build an electric-assisted bike, where I'm forced to pedal while moving…and therefore do not risk falling asleep while in transit. Further, for times when the bike is simply too much, I'm now nearing completion of a small motorized folding platform/kick scooter, that both promises to speed transportation between bus/transit stops and final destinations, and also fold-away once I've reached my destination.

Personality

My most common Myers-Briggs personality result is INTP, though ENTP and INTJ have also been past results.

Date Result Source
OCT2005 INTP Personality Pathways
JUN2009 INTJ MyPersonality.com
AUG2009 ENTP Facebook's Myers-Briggs Personality Test
life.txt · Last modified: 2015/01/22 22:08 by gregg
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