Around 28 August 1956.     5 min read.
Cover image

Just before fourth grade I was no longer able to avoid the eye doctor. He was a true believer in the "Plus Lens Theory", a type of "conversion therapy" which imagined you could train away myopia by forcing kids to wear bifocal glasses. Perhaps encouraging sufficiently motivated people to move their book a bit farther from their face than is comfortable could stretch their eye muscles into a less myopic habit. But imposing glasses with half of the visual area having a different power, different focus, and different size and movement of objects, and enlisting parents to force kids to wear them every waking moment, just destroyed my vision and my sense of my body and the world. (In six months I needed much stronger glasses to be able to read the school blackboard at all.)

The command was to do exercises, tilting my head up and down, left and right, all around, and learn to "adapt" to the apparently chaotic motion of the world. Those compensations got embedded deeply into my brain, and then overlaid by a new set with each change of lenses. The photo above this section shows the outlines of the bifocal adds - a round-top set at first, then the flat-top set, and then another round-top design. They couldn't even keep them aligned with each other.

But the fascinating part of that torture is how I enlisted the right-side facial trauma I'd experienced with the tonsillectomy, along with my external ear struggling against the hooked temple tips of my glasses, to try to relieve the perceptual nightmare of the bizarre lenses. I spent hours stuck in a church pew, experimenting with tensing my neck muscles to force my cricoid cartilage against my carotid sinus (the body's primary sensor for blood pressure while you're upright) to black out my conflicting upper and right peripheral vision.

I've always suspected my caved-in chest was a result of many years of looking down at it through the less-negative bifocal parts of my glasses. It looked much larger and closer than the parts of my body seen through the stronger lens power, so I tried to suck it backward and push it down toward my abdomen - while rounding my shoulders out over and around it, and arching my spine backward to make room for breathing.

Turns out there is a medical term for that - pectus excavatum - a sunken appearance of the sternum. The most common form is a cup-shaped concavity, involving the lower end of the sternum and the xiphoid process at its bottom tip. The lower-most ribs may protrude ("flared ribs") - in my case only on the right side.

Pectus excavatum is now thought to result from autosomal dominant inheritance. My mother's chest was obviously collapsed after losing most of her lung capacity to tuberculosis, but I don't remember her posture before her illness. I was never aware of my father having unusual posture, and never saw any other relatives naked. But flipping through old photos, his mother jumps out as having exactly my old posture - spine arched backward, shoulders rounded, jaw jutting dramatically forward.

Pectus excavatum is genetically related to a surprising number of other conditions I've experienced: https://www.malacards.org/card/pectus_excavatum?limit[RelatedDiseases]=80&showAll=True

Myopia, which I obviously have.

Tuberculosis, which I officially have. Apparently there is now known to be a genetic susceptibility factor in addition to the bacterial cause.

Adenoid_hypertrophy, an upper respiratory tract disease characterized by the unusual growth of the adenoid tonsil; has symptom snoring, has symptom hyponasality, has symptom otitis media with effusion, has symptom mouth breathing. Mine was removed due to the swelling.

Syncope, the medical term for temporary loss of consciousness due to the sudden decline of blood flow to the brain. Syncope is commonly called fainting or "passing out." The field of vision may "white out" or "black out." Syncope can occur in otherwise healthy people and affects all age groups. Vasovagal syncope usually has an easily identified triggering event such as emotional stress, trauma, pain, the sight of blood, or prolonged standing. Carotid sinus syncope happens because of constriction of the carotid artery in the neck. I've pretty obviously experienced both kinds.

Sleep apnea, brief interruptions of breathing during sleep, often with snoring interrupted by periods of silence followed by gasps. The most common type of sleep apnea is obstructive sleep apnea (OSA), caused by relaxation of soft tissue in the back of the throat that blocks the passage of air. (Unlikely since most of mine was cut away.) Central sleep apnea (CSA) is caused by irregularities in the brain's normal signals to breathe. Could that have been part of the Consumed by the Light experience?

Marfan syndrome (MFS), a genetic disorder of the connective tissue, caused by a mutation in FBN1. Diagnosis is based on the Ghent criteria, most of which are unknown for me:
1 - aortic root aneurysm - swelling just at the exit from the heart
2 - ectopia lentis - dislocated lens in the eye
3 - FBN1 mutation
4 - Scoring of systemic features, some of which I recognize:
pectus excavatum or chest asymmetry = 1
Hindfoot deformity = 2
myopia > 3 diopters = 1
wrist OR thumb sign = 1
So I have 5 of the needed 7, or the full 7 if I count "Wrist AND thumb sign 3", which I barely meet.
In the older, low tech view, I recognize a lot of the Symptoms & Phenotypes:
disproportionate tall stature
slender build
pectus excavatum
sleep disturbance
visual impairment
dental crowding
joint hypermobility

The "hindfoot valgus deformity" is part of the interlinked spatial confusion all up and down my right side. When I'm "in my body", the heel is directly below the ankle. When I'm not, my right "trick knee" feels like it twists clockwise, my calf muscle stays on the edge of a severe cramp, the arch of my right foot flattens, and my right heel angles outward below my ankle.  

My purpose here is not to qualify for extra oppression points, but to show my amazement that so many of the childhood experiences that seemed to be random surprises and mystified all the doctors are now known to be connected genetically!

Back then I had no friends, no books or magazines, no TV. Literally entire summers were spent riding my bike in tight circles in front of the house, or sitting in the top of a tree meditating. I had no words or concepts for the experiences, for chakras and kundalini, for clairvoyance and telepathy, for the quirks of an Aspie brain. But I naively explored anything I could reach - and used it to relieve the pain of my weird glasses.

That was also the year the music teacher found a junk oboe in a batch of used instruments he'd bought, and announced I would play it. I had no idea oboes existed, and was never asked if I wanted to join the band. Having to produce the intense breath pressure required by the tiny reed, while trying to read music through my weird glasses, was torture on my tonsillectomy scars and distorted visual space.