HyperNychthemeral Syndrome!

All animals and plants have an endogenously generated near-24-hour 'circadian' clock rhythm (that is, an "internal body clock") that regulates the approximate 24-hour cycle of biological processes, such as sleep or hormone production. These rhythms have a period close to, but not exactly 24 hours, and are synchronized daily by environmental time cues. In mammals, circadian rhythms are generated by the suprachiasmatic nuclei (SCN) in a structure of the brain known as the hypothalamus with the day-night cycle as the primary environmental time cue that synchronizes the circadian system to the 24-hour day. Many people are unaware that their ability to sleep at night and be awake in the day is largely controlled by their internal body clock where light is the primary cue to help reset the internal body clock.

For someone with a longer circadian delay (i.e., on a 25-hour clock rather than 24.5-hour clock) sleep disturbance and departure from the 24-hour light-dark cycle surfaces much quicker. Consequently, sleeping at night becomes more difficult and the drive to sleep during the day increases. Eventually, the person’s sleep-wake cycle realigns with the 24-hour light-dark cycle and they are able to enjoy the conventional sleep period once again. However, this period of good sleep is only temporary as the sleep cycle continues to shift later. {Source: SleepFoundation.org}   (Nychthemeral defined)

When I was boy I remember insisting I move into the basement; I lived in the basement of one residence or another, from the age of ten until I moved out of my parental home at 17. But like almost everyone, back then, I was completely unaware of sleep disorders such as CRSD or HNS. I was instinctually trying to find a cave or a den, so that I could fall asleep, because the smallest bit of light or talking or other disruptions, kept me awake. I was sleeping from early morning until afternoon, if not bothered. But if bothered, I can remember often lying awake until sunrise.

Consequently, I was always sleep deprived, and many times only sleeping a few hours before being aggressively awakened to attend public school. Thus, I did not like going to school, even though I craved learning itself. Raised a latchkey kid by a divorced working mother and two older sisters, my mother remarried an insensitive, desensitized, bigoted, simpleton alcoholic, when I was about twelve. At first we left each other alone; as the male head of the house, he nevertheless usurped his authority therein: It did not go well. I could tell early on that he was a simpleton, but Mom was lonely and raising four kids was rough.

Subtle verbal abuse (or aggression) was not considered abuse back in the seventies; he too often called me lazy or worthless (or worse) when I'd sleep in until noon on weekends, or when I could not easily awaken for school. Because of HNS, I was worthless overall as a human being. My self-worth was being impacted by my inability to be like everyone else; I struggled with HNS and my interactions with the rest of society faltered.

Aside from mom's husband and all his apparent problems, he (like so many others) regained his ever-draining ego, at the expense of others: me for one. And yet, it was the relentless tide of racial bigotry that finally drove me away; why I moved out young; why I dropped out of high school. By the start of my senior year, I owned a car, was employed (apprentice carpenter), and with an apartment shared with a year-older friend, with similar home issues.

But the same problems with sleep followed me throughout my life. Being terminated from too many jobs by showing up late all the time, I knew I'd have to find another way to survive. So, I eventually started my own construction company; at least there I could not be fired! I hired employees, and told them that I did all my business and bookkeeping in the mornings, and trained them to show up and start the home building work without my presence. I'd come in after lunch.

That worked for awhile, but when my supervisors could not contact me in the mornings when problems arose, they figured out that something was wrong, and would undermine me to the builders we were building the homes for, as they'd often show up mornings seeking me, while I was secretly sleeping. My supervisors were experienced themselves, and would basically undermine me, steal my builders workload, and even my other employees, while I was covertly snoozing.

Jumping forward in time a bit: I had a long physical rehabilitation after a severe construction accident almost took my dominant hand (it's irreparably damaged); as a carpenter employee at the time, the accident happened because I was sleep deprived and thus unfocused, the morning of the accident. I even had a microsleep event in the ambulance and (at first) they thought I was going unconscious from blood loss.

But that was the first time-period that I learned all about sleep disorders! Still, after a long time of liquidating all that I owned (a construction company and real estate) to financially survive through the Recession, alongside my physical disability, I acquiesced to the realization that I even had, a formerly unrecognized and undiagnosed disability: A Sighted CRSD.

Then the Great Recession (and housing bubble burst) hit the building industry hard; prior to that time, my wife abandoned me for a wealthy man. By the time I acquiesced to it all; after forgoing suicide; after abandoning the notion of returning to nature and living as my biological clock and the rhythms of the natural world guided me, just as it had our ancestors of ancient times; that is, to be intentionally homeless, I applied for (and was awarded in 2014) Disability; fortunately by then, they too understood all this: I was not alone in this.

I could totally relate to the trial patient mentioned in the NCBI report titled: HyperNychthemeral Sleep-Wake Syndrome: A Treatment Attempt. The National Center for Biotechnology Information is part of the US National Library of Medicine, a branch of the National Institutes of Health. The Abstract read: The wake and sleep-onset times of a patient with a sleep-wake cycle longer than 24 hr were recorded by the patient for 4 years. During this time, the patient found himself unable to maintain a 24-hr sleep-wake schedule. When treated with 1-2 mg Clonazepam, taken nightly, he was able to become entrained to a 24-hr day. Despite entrainment of his sleep-wake cycle, the patient reported depression, lack of motivation and fatigue and chose not to continue taking the drug.

I tried many hundreds of times, over the course of my life, to adjust to the rest of society, but it always failed eventually, no matter how long I could keep the cycle "normal". I could sustain normal sleep-wake cycles for up to 2 weeks when I was younger (under 40), but as I aged it got smaller in duration, and harder to do at all. Nowadays, I do not even try. I fall asleep when I fall asleep, ignoring the clock and the calendar, and I awake when I awake. No alarms for me anymore. I do lose out on things, but I must accept that: Life is more peaceful now. Ironically, my favorite time of the day is the early mornings and the sunrise!

Nevertheless, I still live in a world among other humans that still do not know about this disorder or disease, and frankly, would not care (not really), even if they were educated about it. Being fundamentally unemployable, and now, too old and too broke to start a new construction business, even those places that I've qualified for as a volunteer, do not call me in for volunteer work after learning of my disabilities (HNS in particular). Why? Because they need people who can show up at a set time, as would any employer. I'm not needed even in the volunteer world of the worldly: But the world follows a different path from The Way!

When most people do not understand the varied issues that other people could have, either through ignorance or indifference, those people can be, not only inconsiderate, they can even be downright mean. How would you react if your employer had mandatory monthly meetings, and they were always set to begin at 3am? I bet that would be so problematic that you'd consider other employment. But that is my world; that's the world of all with HNS. Except, I/we cannot simply quit it! There is no long term successful treatment, and there likely never will be, unless there's a cure for the need to sleep itself.

We humans have come a long way from the days of abject gender or racial inequality, but the roots of all bigotry remain deeply embedded within. It is really hard for most humans to fully accept other humans that are not just like them, in any and all ways. I have contacted many Christian Intentional Community's to join them, but after they read this content, I never hear from them again. Homeless for a time, the shelters all operated on schedules that did not account for HNS patients, and to this day, there are none that consider it in their operation paradigms.

But this has always been the case with discrimination; all discrimination. But all discrimination has its roots in what I call demonic roots; or, the evils of being and living in an us-against-them world. The worldly demand that everyone else live by their rules and ways; their ways are driven by the economy, and the politics behind the map lines and the untold blood spilled to conquer new lands; the masses are assuredly doomed to blind indoctrination and normalization!