Most people are familiar with restless sleep where the night is constantly interrupted by one thing, another, or nothing in particular. Short periods of unconsciousness are only randomly interspersed throughout the night and insufficient to guarantee a reasonably wakeful and rested morning. Over the years I’ve dealt with the effects and side-effects of this kind of sleep deprivation. It would creep up on me frequently during periods of high stress such as points in my graduate studies when my mind would refuse to wind-down for the night and keep me up until I got out of bed and worked through whatever problem it was I was mulling over (a real issue when problems could take weeks to work through).
Lately I’ve been experiencing a different kind of disturbed sleep, something I’ve decided is best described as worthless sleep. It’s the kind of sleep where you fall asleep almost instantly, are utterly unconscious of anything around you or any disturbance to your peaceful slumber, and yet you wake up tired, grumpy, with a raging headache, and even feeling kind of sick or weak at times. This is the sleep of someone suffering from “sleep disordered breathing,” or in my case more specifically “obstructive sleep apnea.” Each night I am forced to sleep without treatment (a.k.a. the Darth Vader Device or DVD) I stop breathing a couple of times each minute that I’m in deep sleep. This pause lasts until my blood oxygen saturation dips low enough to temporarily wake me from deep sleep enough for me to start breathing again. I am unconscious of these periods, but they devastate the most critical phases of sleep. As a result, I’m never in the deep phases of sleep long enough for my body to rebuild and for me to feel rested.
For the last two and a half years I’ve had the misfortune and pleasure of plugging myself into a machine that blows pressurized air into my nose to keep the airway open. This prevents my throat from closing off and allows me to spend sufficient time in deep sleep to rest and restore in the course of a night. It has been quite effective for me in spite of the discomfort and the difficulties Liz has associated with trying to share a bed with a machine that blows air in her face and makes funny noises when the seal is slightly off; not to mention the difficulty of cuddling with someone who has what looks like a medieval torture device attached to their face. Recognizing how rough things were before I got treated, I have been willing to put up with the side-effects and have always been what the doctors call “compliant” — a term not generally used by the medical community to describe my behavior.
Recently, I’ve had the reality of my handicap and dependence on treatment reinforced in a very visceral way. On a recent trip overseas, I took the DVD as carry-on to avert the likely event that my bags got lost or delayed. By the time I landed in Washington D.C., I was so sleep deprived due to jet-lag and the long day of sitting in extremely uncomfortable seats (both on the plane and at the airport) that I forgot to grab my stuff out of the overhead bin until after I had cleared through customs and couldn’t turn back. The unsuccessful attempt to locate the DVD through the airline, the delay getting insurance approval for a replacement, and now the delays associated with the asinine requirement that a respiratory therapist schedule a time to teach me how to properly use something I’ve been using for the last several years have culminated in almost two weeks since I’ve had a good nights rest. Think of it as being about three to four beers into an all-night bender as far as cognitive impairment goes (or maybe five or six… judging your own impairment while you are impaired is a highly inexact science), simultaneously like being really hung-over after that all night bender as far as physical condition goes, and overall about as patient and kind as Charles Manson when it comes to emotional stability.
For the life of me, I can’t figure out why it is lower risk for the supplier to mandate an appointment and the associated delay in treatment when the delay is akin to telling me to continue driving drunk while being emotionally unstable (mostly just very angry and easily provoked). Unfortunately, this episode has forced me to concede that I am in fact limited by my condition. I am beholden to modern medicine. Had I been born a hundred years ago, I’d probably be labeled a loafer because I would fall asleep all the time or be the scary angry man down the street that nobody dares talk to for fear of losing a valuable bodily appendage. I’d also probably die of a heart attack by the time I was in my early fifties.
While I’ve accepted the fact of my dependence, I still can’t come to terms with why it is the case. It seems nearly everyone I am around is coping with the same or similar conditions. For millennia, the human race has gotten along generally fine without having to force pressurized air down their throats all night, every night. Until recently (that is until my and to some extent my father’s generation began being diagnosed with the disease) everyone I knew who had substantial problems with apnea had other complicating factors that could easily explain it like being obese, airway deformities, or having a very large neck. However, in my office at work there are five people: all active duty military, all relatively fit, none substantially over weight and only one with anatomical issues. Three of us have confirmed obstructive sleep apnea and one of the remaining two is being evaluated for it as I write. Granted, it is a small sample size, but it is somewhat representative of the larger population of acquaintances and associates I have.
There could be an argument that the reason there are so many people being treated now is because we are more aware of the problem. However, this recent experience confirmed for me that this argument could not be true. I am functionally disabled without treatment. There is no way what I am experiencing would have gone undetected any time in the last fifty years and that I only know about it because we as a society are more aware of it. I am a danger to myself and those around me without treatment, and it is visible enough that those around me are as anxious as I am to get me back on treatment. So the question I cannot answer is “what has changed in the last 50 or so years to make this condition so much more prevalent?” (to be fair, I have a few theories, but they are generally unsubstantiated and won’t be addressed here)
Being unable to answer my question, I am left to anxiously await that all-important appointment with the “respiratory therapist” who’s only function is to hand me the damn machine and show me how to turn it on (hmmm… let me see… maybe the big, round button with the power symbol on it?!?!). The challenge will be to not bite his/her head off and make it out of the room with the machine and without a police escort.
We wonder similarly about such things as ADHD, Manic Depressive, and so on. Were we unaware because they would disappear and become mountain men? Were expectations for appropriate behavior different? Even diabetes 2 – is it partly that people just grew emotionally and physically unstable and then died early of kidney failure. I am glad for some of medicines great advances. I think of Arlo in his mask as a larva in a cocoon – safe and sound, wrapped up for the night, probiscus and all.